I am over 5 years cancer free since being diagnosed in 2007 and need a party. But unfortunately, I am still dealing with significant residual complications from my surgery and still battling Workers' Compensation to settle my presumptive cancer case. So I guess I will put off having one for now and will party when fewer of you newly diagnosed have to face what I have had to.
My experience has been very negative, but yours doesn't have to be. There are no lemon laws, just significant follow-up treatment and further operations in your future to correct problems, should you be referred to the wrong doctor like I was. Read further and choose to move forward with an infomed decision, consultations over the several different treatment options and if you still decide to be treated, see and interview at least 3 doctors to find the best one to treat you and who you can trust to have your best interest in mind, not theirs. A Doctor telling you no, they won't treat you, may be your best friend.
If I was to say anything about my cancer to help others, I would probably say I would have spent more time deciding on what to do about it. That is, if I decided to do anything at all right then. Not saying, I would have ignored it, but gone on Active Surveillance as the best choice, at the time, for my diagnosis or until something may have changed. If or when something did change in the future, this would have given me the time needed to find and commit myself into the best hands in the business no matter how far and wide I had to search or wait for when they were available. It would have also given time to allow those PC Researcher to come up with better options, which would be less invasive with fewer complications, coming daily to a store near you or across the country. It doesn't matter, considering the consequences of not waiting or not traveling to get treated. If in the Sacramento, CA. area and you don't want to travel to San Francisco, I will be happy drive you as an ACS "Road to Recovery" driver to make sure you see a good doctor who I know is there and not potently a bad one trained by my surgeon in Sacramento.
My diagnosis, as I understand it now, would have given me many years to decide. So why was I and too many of my brothers so scared about being diagnosed, I let the first and well recommended surgeon take over my life, intelligence and trust he would do the right thing. I would probably do more research, when buying a new car, than I did when choosing this doctor and yes, I can look back and compare him to just another high pressure car salesman selling his skills. Skills, more than likely, relying on false statistics to back up his promises. After all, he did send a false report to my referring doctor after my operation to ensure for further referrals and discount my claims and did try and convince me I was better off than I thought. As I said, no lemon laws.
At this time only about 19% of PC patients with my diagnosis choose Active Surveillance, while the rest of us allow or seek out doctors who lead us to do something more aggressive. Why?
Treating prostate cancer is a multi-billion dollar industry and who do you see for it but an urologist. They are by trade a surgeon and likely to want to cut, making the big bucks instead of looking out for your best interest. If you do not educate yourself on how aggressive or non-aggressive your cancer is or whether it may or may not have spread out of the prostate, you have to know first, there are many sharks feeding in those prostate infested waters.
If you have cancer that is low on the aggressive scale (Gleason Scale) or may be indolent or non-aggressive, looking like or acting like a scared sick seal will get you eaten alive. Once you have had some form of invasive, quality of life altering treatment, there is no turning back. Also, there is no guarantee, even with the most invasive methods, they will get it all. For Radical Prostatectomy's 25% to 30% of the time for aggressive ones they leave cancer behind and in my case it can range from 1% to 10%. So finding you have it and just wanting it gone cannot be guaranteed 100% of the time no matter what the treatment. If aggressive and possible outside the prostate or it has little aggressive potential and confined to the prostate or because your age or health issues are catching up to you, it doesn't make since to start cutting and ruin the time you have left, which could be substantial. There are no replacement prostates yet and few replacement parts for other organs damaged.
Once diagnosed, I also wanted mine completely gone too. But today, I am still stressed that something may have been left behind. In my doctor's surgical notes he reported, after cutting my prostate loose, he then focused his attention on the bladder neck and discovered he had left a piece of my prostate behind, which he had to then remove separately. Since then most all of my PSA tests have come back as negligible or essentially less than 0.1. Yet in February 2011, one did show a rise to 0.1 and this changed my testing from ever 6 months down to every 3, until tests looked good again. So, did he leave other pieces behind in an area he did not focus on or when breaking the capsule (prostate) holding the cancer in, did he release cancer cells into my body? I have no way of knowing and just wanting it gone is no longer in my vocabulary and I have to think about it every time I have a PSA test for the rest of my life.
If you are not careful, you could find yourself in the same sinking boat, I ended up in. When deciding and knowing what I know today, I would have not chosen the same treatment option and definitely never gone to the same doctor or even the area where he practices to be treated. He is definitely a shark in those waters and so maybe anyone he trained.
A caution though, in about 25% to 35% of the cases, once the prostate is removed and dissected, the cancer's aggressiveness is upgraded. So a good active surveillance program provided by the best doctor to administer it is imperative, should you decide to go on one and wait it out. Even though you may have an aggressive form, it may also be small and slow growing too and not need immediate treatment or aggressive treatment. Mine was dissected and revealed the same diagnosis as my biopsy showed.
Overtreatment of indolent or non-aggressive Prostate Cancer is rampant and we need a solution now not later. As I found and explain later, there are virtually not incentives or consequences to get doctors to stop this over treating. The controversy on how to stop it rages on. The U.S. Preventative Services Task Force (USPSTF) has recommended men not get screened for prostate cancer, because of the resulting overtreatment and the resulting significant quality of life altering bad side affects and possibly loss of life itself this treatment can cause. Complications from even simple operations can result in death for various reasons. With what I have gone through, I could be the USPSTF's poster child for what can and does go wrong. I could also easily be convinced they are right with the rate of over treating now going on and the lack of the professionals in the field of urology to reign in their own and get this issue under control. Even Intuitive Surgical makers of the "da Vinci", the Sacramento Media and Sacramento City Councilmember Darrel Fong written to about my concerns have never responded or acted to stop it.
The American Urologic Association (AUA) along with many other organizations are apposed to this recommendation, believing in monitoring or active surveillance, if appropriate, after diagnosis as a means to prevent over treating. But, I have yet to see a plan to get all doctors recommending and convincing patients to think about doing so and my surgeon doesn't even belong to AUA, nor does his intern assistant out now at Sutter Hospital practicing on his own. The US Secretary of Health and Human Services is also not in favor of this recommendation it either. So it may be just up to you to protect yourself.
Yet, the Department of Defense (DOD) is taking the positive and a different approach in their administration of the $80 million annually in Federal funding for prostate cancer research. They are only funding projects that focus on finding and treating just aggressive prostate cancers and not indolent forms of it.
Therefore, I am still in favor of PSA testing and performing biopsies but only after repeated PSA tests have similar results. It is not the imperfect testing we have today, but how doctors and patients use the results of the biopsy.
If you want to do something positive, write your legislators to add to and continue this DOD funding source. I really want to see developed one of those Nano Particles, which has the ability to not only search out and find just PC cells, but then also deliver a package of lethal chemicals to kill just these cells too. Also writing to ACS, Stand up to Cancer and other organizations soliciting money for research to encourage them to follow DOD's approach would be beneficial. DOD also uses Consumer reviewers, like you and me, who have had PC to evaluate the impacts of these proposals, something all funding sources should be doing too. We also need to write to our legislators to institute better oversight and discipline of the doctors who persist in recommending treatment when it is not necessary. We should be able to sue them for just this alone and all the mistakes materializing after their botched surgeries no matter how long it take for them to show up. But today's system does not allow for either.
My career started by being a seasonal firefighter in 1972 with the Forest Service and lasted 15 years with them. Then with another 22.5 years under my belt with CAL FIRE then The Department of Forestry and Fire Protection I had been given a fantastic opportunity to have a diverse and challenging career. Many a time, I wondered why I was not paying them to get to do what I was doing and no matter the cancer or my other injuries, I would still have chosen this profession. Yet this was not without much risk and when you are young, you are invincible.
At age 57 though, with 35.5 years firefighting and being a Peace Officer, Forester and EMT, the damages were becoming very evident, placing me on limited duty and keeping me from doing what I loved to do. Therefore, I reluctantly pulled the plug and retired two years later in December 2009 on Industrial Disability after making it to a Division Chief with the Department overseeing my statewide program. This was not from my Prostate Cancer, but several back injuries and Carpal Tunnel Syndrome.
The Cancer snuck into the picture after 17 years with an enlarged prostate (BHP), just like the Carpal Tunnel developed after many years of exposure. This exposure was not only due to the long hours you endure during weeks on the same wildland fire with no breathing or skin protection, but included a few structure and vehicle fires, drug lab and Marijuana raids. Along with this, we had no engine bay exhaust systems back then and just warming the engine up, to get the air break pressure up to move the engine out a bay, was probable not good either. From what I was exposed to including fighting fires on serpentine soils with asbestos in the dust, I expected to have more lung problems than having this one.
I have to say though, because of early monitoring of my BPH starting at age 40, it did result in my being tested annually for PSA (prostate specific antigen) and prostate cancer, resulting in the early detection I had it at age 57.
Yet, I had only gone from having a PSA of 1 in 2006 to a 3 after my blood test in 2007. Yet, nothing was digitally detectable at that time and I did have the BHP, which can add to the amount of PSA produced. For example an average 30 cc prostate can average a PSA of 3 without any cancer and an 80 cc one can average around 8, but when the PSA is 50% higher than these, aggressive cancers may be of concern. Mine after removed was at 43 cc's with only a 3 PSA and again my Gleason score indicated it was not aggressive.
For my PSA test, I may have had sex the night before, road my bike, had some infection or just did something out of the ordinary to cause this rise. At least, I was consistent about having the same lab doing it, which is very important and as such the change was probably not attributed to them. My doctor, because of the rise, wanted me to be seen by my urologist and have him do a biopsy. Maybe good, maybe bad, but I should have had another PSA test to confirm, with PSA tests many times showing false positives for the reasons explained above. Yet, I did have the biopsy without a second test and my doctor did call me by phone while on vacation and broke the news I had prostate cancer.
At least my having the second PSA test may have shown the rate of rise was not this great and thus, maybe the cancer was not growing very fast either, who knows without the second test. Yet, I was definitely being put on the fast tract to be treated with surgery planned only 5 month later.
The vacation ended quickly and I was out on the prowl for answers.
Age also plays a major role in your treatment choice, which the chances of getting Prostate Cancer are a given the older you get, but the chance of dying of something else is more likely the older you get too. Why have your golden years spoiled by getting treated and ruining your quality of life, just to die a few years later of a heart attack or some other old age malady. How old is Warren Buffet, I think in his 80s, and why with Stage 1 prostate cancer and with all his resources was he talked into radiation treatment? Probably had another good car salesman with $ signs in his eyes. As Firefighters, I did have good insurance and as such was also a good target too.
By the way, a heart healthy diet is also a cancer healthy one too and with low grade or indolent cancer, just changing your diet can halt the cancer in its tracks. Read the "China Study".
Having now learned the risks firefighters have for getting prostate cancer is much greater than for the general population, I would have also taken more steps to protect myself even though I had been in screening for it very early.
Yet beware of screening. I do believe in early screening and baseline screening especially for firefighters starting at around age 40, where statistics and studies are showing they have a greater probability of getting it than the general population. But screening can lead to unnecessary biopsies causing damages too and if cancer is found, the odds are too high now you will receive some unnecessary treatment as I did along with 81% of those so diagnosed with potentially an indolent form of it.
The law is also on the side of the doctors and unless they take out some other organ than your prostate or cut off your leg instead, they can cause you numerous complications they can fail or withhold telling you about or even kill you and not be sued under the present malpractice system. This system also provides for a very limited statuette of limitations applying as well, I believe only one year. Yet, many of my complications were not realized until after this year had passed. Once I had exhausted all the remedies to get this doctor to respond and take responsibility for his mistakes, I could also not find even one attorney in all of California to take on my case. Because of the laws, few are left practicing anyway.
The medical boards, societies, hospitals and other doctors are also there to protect their own and not you the patient. In my complaint with the Medical Board of California against the doctors who performed my "da Vinci" robotic radical prostatectomy, they just told me they were dropping my complaint against the doctors who performed it, because and I quote "the care rendered in this case was consistent with the standard of practice in the community", which was in Sacramento at UC Davis. (See attached letter to me) The Sierra, Sacramento Valley Medical Society also agreed with this same conclusion.
In addition, the doctor who did my surgery failed to help me after sending him three letters, which he never responded to. His hospital only apologized to me after writing to them twice and told me to file a complaint with them if I wanted. Yet they told me, once I filed it, they would investigated it and if they found anything wrong, they would take some corrective action, but would keep this all confidential. So who knows where it went, probably in a round file with this doctor still there practicing on patients and cutting out indolent cancers. I know, because my urologist has referred other patients I have met at my Man-to-Man meetings with my same diagnosis to him, who already had surgeries scheduled. I even wrote to this surgeon about an article I had read on "Neon Nerves", which could help in protecting the nerve buddle controlling erections during surgery. This letter he apparently also ignored like all my other letters, because of no response back to me. After all he is an expert and I am only a patient.
Therefore, with this doctor being the main doctor training other doctors at UC Davis and his intern assistant in my operation now working at SutterHospital in Sacramento is why I would recommend staying clear of at least UC Davis and Sutter as a minimum. But probably, on the whole, you may want to avoid all of Sacramento area as well. With this in mind, I would ask where and from whom did your doctor receive their training?
Even the many good doctors or therapist, I have seen to try and correct all my damages since my botched prostatectomy, all are sympathetic of my many issues, but do also try and convince me it was not my surgeon's fault. Things happen, but how many to just one patient do you start getting suspicious.
At one point, I even called Dr. Peter Carroll at UC San Francisco to discuss an issue over my surgery and with his never being involved with it, he was more than willing to give me a personal call back to help out. This is unlike the lack of any help from my own surgeon after three letters to him. Dr. Carroll's reputation is very good and if choosing a radical robotic surgery, he would be my first choice today, not the doctor who blew mine and never bothered to contact me or help solve any of my issues. Again, he only lied about my recovery and tried to convince me and my urologist I was doing much better than I thought.
To avoid my pitfalls, you need to look beyond your Doctor's office for advice by looking to other prostate cancer patients to see what did and did not work for them and who did their treatment and would they recommend them.
They can be found at one of the many support/education groups available. Other specialist, other than an urologist, should be consulted along with American Cancer Society (ACS), Firefighters Cancer Support Network (FCSN), The California Prostate Cancer Coalition, The Prostate Net, The Prostate Cancer Research Institute, U. S. Preventive Services Task Force, Us TOO, You are not Alone (YANA) and any other cancer information/support organizations you can find out there.
When diagnosed, your urologist only has a limited amount of time to talk to you about it and when you are first informed you have it, you have a limited ability to absorb all the information anyway. This may be the most stressful event you have ever experienced.
Step Back, Calm Down and Get Informed!!! Again, most Prostate Cancers are very slow growing and do not require immediate treatment. So rush to find information not an operation. But before leaving your doctor's office, you should at least have an idea of how aggressive your cancer may be. Knowing, does leave you a lot of time to decide for yourself with the help of others. There is a lot of help out there, you just have to loose your pride and look for it.
I now provide some help as an American Cancer Society (ACS) Man-to-Man support/education group facilitator and am listed with FCSN as someone to call when looking for support or information. I am signing up to be a mentor for The Prostate Cancer Research Institute and have participated as a Consumer Reviewer on a Department of Defense Scientific Peer Review Panel in Washington DC reviewing PC Research Proposals for awarding a piece of the $80 million in funding available each year, which does concentrate on detecting and treating only aggressive cancer and leaving indolent forms of it alone. I am also an ACS Road to Recovery Driver and have heard both the good and horror stories of treatments, not just for PC.
Yet back to my Prostate Cancer.
There are a number of sites you can go to and look up definitions of the criteria for Low Risk Prostate Cancer or the Criteria for Going on Active Surveillance, of which I met all of them. The book "Invasion of the Prostate Snatchers" by Ralph H. Bloom and Mark Sholz from the Other Press at www.otherpress.com is also good reading on the whole subject of PC and signing up for free weekly videos from Dr. Snuffy Myers at www.askdrmyers.wordpress.com. is a good site as well and if going to back issues, he does have a series about active surveillance.
At age 57, I had my annual PSA blood test and digital exam. Once the results were in, my doctor expressed concerns I should have a biopsy. I had a rise of about 2 points in one year, from a 1 to a 3, but nothing digitally found at my examination. It was the rate of rise not the total PSA, which was still very low for my age and prostate size having BHP and with another test, it may have been lower, but I never had one. So instead of taking another blood test to know for sure, I had this amount of a rise, my Urologist went ahead with performing a biopsy, but explained he was confident nothing would be found.
Yet to my dismay, it came back positive. I now had multifocal cancer found on both sides of my prostate about 5% total. Yet I only had 2 cores out of the 12 taken showing any cancer, with one core with so little showing, it may have been impossible to pick up a tumor by other testing. Yet on both sides, it was only slow growing with a Gleason score of 6 and described as a T1c. I had a 3+3=6, but even a 3+4 not a 4+ 3 would have indicated it may be indolent and/or non aggressive.
After hearing a presentation of cryo therapy (Freezing the prostate) and still being sexually active, with multifocal cancer, they would not be able to do focused cryo and with full freezing of the prostate, there goes your whole nerve bundle controlling erections. Also the closer the cancer to the urethra, which they protect with warming, cancer near it, can be left behind especially if your diagnoses was because the cancer was causing you a hard time peeing, which I was having.
Doctors, I consulted with, did not recommend seed implants either, because I already had colorectal problems and with concerns these same problems would be exacerbated by other radiation options kept me from exploring them. But with the techniques today, these concerns were unfounded and I should have explored them more.
No, I just listened to the recommendations for seeing just this one doctor at UC Davis and was convinced by him "da Vinci" robotic radical prostatectomy was the way to go. Less blood loss, less hospital stay and a quicker recuperation. Because of my age, 57 and in good health with my surgeon describing me as being an excellent candidate for the surgery, the only discussions of active surveillance by him did not include anything about my cancer possibly meeting the definition of indolent or limited aggressiveness. My surgeon just focused on why someone may consider it based on their age and/or poor health.
As the head surgeon at UC Davis, which is a teaching hospital, he was the one doing all the training and had performed hundreds of these surgeries at a rate of two per day, how could I go wrong. But maybe one of those per day was an unnecessary one, like mine. Who knows and how do you find out. A heart surgeon in Redding, CA. did get caught a couple years back.
My introduction to UC Davis Surgery was like being in an assembly line, which did start by standing in a long line. Next came the little cubical, change into the gown, take vitals, ask some questions then wait.
They then pick you up and role you into pr-op, where there was at least 10 others waiting and being prepped for one surgery or another.
Yet, either they were having a bad day or I was not being told the truth about their success rate as well as all the real complications.
Maybe because it is a teaching hospital, this expert did let some intern play with the controls, even though he promised he would be doing the surgery himself. I was in "Greys Anatomy", with the staff talking and joking and apparently not paying attention to what they were supposed to be doing.
Hundreds of the same surgeries performed can make an expert, but hundred can place you into thinking this is just routine and not consider each case on an individual basis. It can also mean hundreds performed with the same bad techniques, resulting in hundreds with similar problems. Again, I had asked the Medical Board to check to see if other patients of my surgeon had experienced similar issues, which did result in there response above. Go figure?
- It started by having the anesthesiologist completely destroying one of my veins in my left wrist when trying to start the IV. When failing on this side, he placed it on the right side. The left wrist is still sore today after my surgery in January 2008.
- I was then wheeled into the operating room, which looked more like a mechanics garage than on "Grey's", with this very large 5 armed devise hanging from the ceiling. It must have been an early version of the "da Vinci" and not what I had seen in the ads showing it in some clean white room.
- I then woke up with major pain in my right eye, later diagnosed by my optometrist as being scratched. Yet, there are no operative notes to indicate the cause. With "da Vinci", they place you on a bean bag and on a table that tilts your head down to move your organs out of the way. I am glad, whatever they did drop into my eye, only resulted in short term pain and little damage at least for now. But not knowing what caused it means no changes will be made to stop this from happening in the future.
- At some point, before docking the "da Vinci", my surgeon tried unsuccessfully in placing what is called a Veress needle, intended to inflate my stomach and move my intestines out of the way. But he reported, he inserted it once under higher pressure, but had to reposition it to get the results needed. (Note: this needle is blindly placed and on a thin person like me, contact with the intestines is possible and could cause damages. Also, would overinflating some place he was not intending to inflate cause some damages too?) The Surgeon's notes of my Surgery, only about 1 page long, read "Complications: None and Condition: Good." So who knows what he did and why another less dangerous method wasn't used i.e. Direct Trocar insertion.
- At some point, they also installed a very large catheter, supposedly the size needed to ensure my urethra did not scare closed after they reattached it to the bladder, once the prostate was removed. Your urethra does go through your prostate and as such the portion inside of it also goes away when you prostate goes.
This catheter needed to stay in place for 10 days to allow the reattached urethra to heal. Yet, unknown to me at this time and only learning about it much later, was their need to cut open the end of my penis to insert this size of catheter. Not to say all penises are the same size and mine was not inadequately sized, but apparently the opening was not standard and so maybe too my urethra compared to the standard size. Whatever the issue, I did learn later and experienced the use of tools available to slowly dilate the opening without cutting. This was very painful when awake, but no further damage, like the cutting, did occur in the process. (See below why these tools were used)
Before this catheter was removed 10 days after surgery, I developed severe pain and swelling of the penis with much leaking around it and some puss too. This pain well over-powered any pain from the surgery, leaving me pretty much immobile from it and not from my surgery incisions until it was removed. Then when contacting the hospital, they told me this was normal. But, I found out later, this was not normal in most cases and if it was properly placed, why was it leaking?
- On their removing the catheter, it took two, I believe in-turn doctors, working over ½ hour to get it out, with much pulling and pain inside and out. It appeared neither was aware of the difficulties they had inserting it or the difficulties I reported while it was in place, because there are no operative notes or any other notes about these issues in my files at UC to know a problem may arise and precaution removing it may be needed. They just kept pulling until it came out while I almost passed out from the pain.
- Once removed and still in insignificant pain and wiping the sweat from my face, I was given a quick lesson on doing the Kegel exercises. I was told to practice stopping my stream while going to the bathroom and to do this same muscle contractions several times a day to build up my pelvic floor muscles to be able to stop any incontinence occurring after the operations. Yet after the catheter was removed, I found I was totally incontinent and not with just with some stress incontinence, like they told me I may have. But unfortunately, I only brought one pad with me to catch any leaking that may happen, but it didn't catch it all.
ACS reports "Lack of bladder control – In the most common type of incontinence after prostate surgery, men leak urine when they cough, laugh, sneeze, or exercise. In rare cases, men lose all ability to control their urine." (So why with an expert at the controls did I end up in the rare category with my being fully incontinent for three months after my surgery and seeing no improvement until going to physical therapy for nine months and 19 sessions with my finally needing another operation to mostly correct this issue with leaking still occurring when sneezing and under other activities today?) Minor leaking also occurs occasionally while sleeping and causes me sometime to get up in the middle of the night to change my underwear.
The only control, I had at first to get back to work, was using a penal clamp (a mid-evil torture devise) or a condom catheter, which tended to leak and required a bag strapped to my leg. These catheters, I found, are generally used for older immobile patients. So for me to use them, while working, I had to develop my own elaborate shaving and taping technique to keep them on each day. A 20 to 30 minute process. As far as the penal clamp, when contacting my surgeon, he had his staff call me back and tell me not to use one. So there I was, leaking constantly with no urine left in my bladder and no way to try and stop a stream, as explained for learning how to properly do Kegels.
When finally getting into physical therapy for learning proper Kegals, my therapist was shocked to here the recommendation to not use the clamp. Her concerns were first, how do you learn to hold back anything when it is constantly draining into a bag and how could I maintain my bladder size when nothing is held in it for months on end.
- Yet the constant Kegel exercises using anal weights and the surgery to correct the incontinence has left me with constant involuntary Kegals all day and all night and constant groin pain as a result. In a sleep study I had, they thought this was restless leg syndrome. I am now back in physical therapy to help with the groin and pelvic floor pain and to try and stop the constant muscle contractions.
- A plus now, is I have expanded my bladder and don't have to get up to go all night. Yet, my having a bladder now 1.5 times the size of a normal one was a concern for my surgeon who placed my AMS sling to try and stop most of my incontinence and this was echoed by my physical therapist.
- You would have thought this was enough, but it was not. The cutting to open my penis also resulted in significant scaring of my penis and urethra, which at six months after my prostatectomy, I found myself with just another bladder infection and a completely scarred closed urethra. I then had to make a trip to the emergency room, have my penis pried open with tools for doing this instead of cutting it again with another catheter reinstalled for another 10 day period. Once it was removed, I had to reinsert a large one daily for 90 days to break up the scarring. This was a very painful process and took using anesthetic gel each time with little relief from the pain provided. Today, I not only occasionally still leak, but have a split steam that sometimes splashes my pants and generally hits the side of the toilet and the floor.
- Remaining sexually active was also a concern and was, as explained above, why I chose not to pursue cryo therapy. Potency was supposed to be protected, because of the nerve sparing nature of this surgery. Most men with proper treatment with PDE-5 inhibitors such as Viagra, Lavitra or Cialis return to normal sexual function in 86% of the cases within 12 months. Yet, with my insurance, Blue Shield, they cut me off after 6 months from surgery and no protesting would change their mind. But even after having to buy them on my own through a web site out of the country, I still, after having the surgery in January 2008, have to resort to penal injections along with these PDE-5s to receive any success. I had also tried a penal pump, which was very uncomfortable and not acceptable for having any real intimacy. The injection process also diminishes the desire to try by both my wife and me and with some unsuccessful attempts in the past, trying has all but stopped.
So did my surgeon protect my nerve bundle on the upper side of my prostate as promised? Since my surgery was in 2008 and according to statistics, potency controlled by the nerves healing may take up to two years to return. So why hasn't it returned for me over 4 year after surgery?
I do not think it will and remember above, my surgeon only paid attention to area of my bladder neck after removing the prostate and found a piece of it left behind. Since the bladder neck is in the same area as the nerve bundle, did he really protect them during the surgery or did he damage them initially or when going after this piece?
Also as explained above, your doctor's statistics may not be all they appear to be and they may want to protect their sources for receiving referrals. So on my 3 month check-up with my surgeon, I reported to him all the problems I was having at that time in person and by letter. Yet instead of passing this information on to my urologist to help me deal with these problems, he reported back to him I was right on tract for my recuperation. He reported I was already receiving partial erection with Viagra and was only using two pads per day. I therefore had to work at convincing my urologist each time I needed other help. I even wrote to him about all my problems and the problems I was having with this surgeon. This was to ensure I did get the help needed and also was an attempt to get him to stop referring other patients to him, which he continues to do so today.
Because of my surgeon writing this much exaggerated report to my urologist has led me to believe he only wanted to protect his statistics reported to other potential patients and keep getting referrals. Therefore, I now recommend at least 3 interviews with potential doctors after deciding on your treatment. You must be comfortable with and trust the doctor's statistics who you choose and if your urologist provides only one doctor, talking to other cancer survivors or other urologists may lead to the right one. As the procedure implies, it is a "Radical" or extreme measure, which should not be taken lightly and avoided whenever possible. This is a life altering or threatening decision and there is no turning back. It has to be right for you not the doctor.
- Yet let's go back to the Veress needle and other items you may be concerned about, which can result in damages. I still don't know if the Veress needle, the high pressure applied to the wrong place or the insertion of the "da Vinci" arms caused damage; or if damages were caused by the use of electronic cauterization tools, which can burn unintended organs or cause harm to distant ones because of the hot smoke they admit, which cannot be vented like in open surgery; or the fact I had a previous abdominal surgery to remove my appendix in 1985, possibly leaving intestinal adhesion disturbed by this type of surgery and which would contradict doing it, with open surgery the best option. All of these issues were not explained to me by my surgeon, but whatever the reason I also had another three surgeries, other than the one to try and correct my Incontinence:
- The first, which I learned later from ACS is a "Inguinal hernia – A groin hernia that requires repair" which I had in April 2009 and occurred in the approximate predicted 1 to 2 year time frame after the prostatectomy. So be prepared and start looking for one if having this surgery at about one year out from it.
- Yet this hernia surgery, like the one for my incontinence, had its own risks and complications. So with much pain where my belt rubs, which also was radiating into my groin, I had to have a swollen suture operated on and removed in August 2012.
- Lastly in May 2011, I had to have major surgery resulting in a much longer stay in the hospital and longer recuperation than my prostatectomy had resulted in. This was because they had to cut my abdomen completely open and clean my small intestines of scaring and banding from my previous surgery. This damage had been restricting my intestines and causing me significant pain, constant runny stools and significant weight loss. As mentioned above I did contact Dr. Peter Carroll at UCSF and one of my questions was in relation to this damage. He did explain that this damage was more than likely caused by my prostatectomy, but this only happens on rare occasions. In addition, Sutter hospital does warn against having "da Vinci" surgery, if having previous abdominal surgery, such as the one I had in 1985 to remove my appendix. Now for about the last month and ½, I have started this cycle of runny stools and abdomen pain and hope I am not in line to have my stomach opened up again.
- In addition to all of the above, if I do happen to have a sexual encounter with my wife, of which I have had only 14 since my surgery in 2008, they can be very painful. I also have had a decreased in penile length, am sterile and for a while I thought I had Lymphedema–A very rare side effect, which causes swelling and pain in the legs or groin from back of fluid after they remove lymph nodes near the prostate with the anticipation they may contain cancer. But this proved not to be the case and was being cause by one of my blood pressure medications. Yet even though the swelling has gone down with a change of medications, the groin and pelvic floor pain continues, likely related to my constantly doing involuntary Kegals from trying so hard in the past to stop my leaking. I am schedule for more physical therapy to help control it. I occasionally still have intestinal pain too, after the surgery to correct the intestinal damage and constantly deal with either constipation or runny stools.
- Oh, and if I did not mention above, UC Davis was kind enough after my surgery to let me get to know Victor, a gang member shot in both legs in a drive by shooting. There was no room in the inn, so they stuck me in their trauma ward in a room with Victor and his 15 or so visiting gang buddies and family, who left no room for my wife to try and step in the room to visit me. The guy also kept me up all night with his incessant calls for the nurse in charge.
As you can see from my experience, my life and quality thereof was heavily impacted. Yet, this is a very survivable disease if caught early and is even survivable after it has escaped the prostate and spread. Yet, all treatments available, which there are many and except for active surveillance will have quality of life altering consequences. These can be devastating to a point, dealing with the depression and work to regain some normalcy can put you in a very vulnerable state. I have not escaped being there and have been seen a psychiatrist and am going to counseling.
When choosing your options, they have to be right for you, not me or anyone else who has had this disease and gives you advise. Even choosing my same doctor may prove successful for you, but I would not bet on it. This is your choice and no one else's. A lot of pre-planning and having a good team behind you though is important to a well fought fire. There is no difference here. I have even known of a CAL FIRE employee who used our Incident Command System (ICS) to plan her wedding, so why not here too. Don't think you can do it on your own and do not rely on just the positive or negative experiences of a brother who fought it, but use these only as a guide.
In addition and after 3 years after diagnosis, I was finally informed of my cancer being presumptively caused by my job. No one from my department informed of this at the time I was diagnosed and I never heard it from my union either. It only came from a doctor who performs Qualified Medical Examinations (QME) for Workers' Comp cases, which I have a few. No one also ever informed to me of the risks of being a firefighter for developing it. All cancers from both Federal and California State Law are presumed to have resulted from being a firefighter. Yet, three specific cancers, Prostate, Testicular and Non-Hodgkin Lymphoma have been shown to have greater occurrences in firefighters than the average population.
Who would have thought about PC, when thinking, breathing all that smoke, could possibly cause lung cancer? So in addition to suffering all the above complications, my attorney and I having been in a battle with State Compensation Insurance Fund and my old Department for years now to get a settlement of my case, since being informed it was presumptive by my QME in October 2010.
ACS doesn't even publish this information for firefighters and they only recommend screening for prostate cancer depending on risk factors at around age 50. But because of the increased risks for firefighters, I feel it would be best if they looked into baseline screening at around age 40 or earlier and kept it up from there on out. Also, for other than wildland fires with no accepted breathing apparatuses, use those B.A.s, use those exhaust systems at your stations and once off the fire, remember just like a HAZMAT, you and your turnouts are covered with carcinogenic hazardous material. Get it cleaned up and enjoy a great and safe career without Prostate Cancer and a bad decision on treatment.
Thanks for listening
CAL FIRE Retired.
Per my previous account of my PC, I was a Firefighter, Peace Officer and Forester working from 1987-December 2009 in a very risky business for a major state firefighting resource management department.
At age 40, I was diagnosed with (BPH), which also resulted in my starting PSA testing at the same time.
Then at age 42, I was Diagnosed with mild Hypogonadism and placed on Testosterone "T" replacement to be able to continue to do my very strenuous job, being tiered all the time, with loss of strength and endurance, some hot flashes and to help with my reduced libido. Yet with low "T", I had no Erectile Dysfunction (ED) present or need ever for any ED medications then or even after diagnosed with PC an taken off "T", until post supposed nerve sparing "da Vinci" Radical Prostatectomy (RP) on 01/18/2008.
My libido today, even after being allowed back on "T" 9 months post RP and over the 6 years since it, with now high "T" levels tested, has become much reduced due to complications of the RP, causing full loss of sexual function, the medications taken it and for other complications my RP surgery and from my other work related injuries. I also have much pain, limitations and other health issues developing because my PC surgery, 5 further surgeries to repair damages from my RP as well as from these other work related injuries. These issues are affecting my mental state and libido, along with a significant number of failures trying to have sexual relations with my wife's. Her desire to have relations too has also been significantly impacted due to my condition. Also as found on line there are a number of articles on the subject of low "T" having little to do with ED or replacements have little effect on improving it. Replacement "T" is a concern for metastatic PC growing, but there is still controversy over it causing recurrence and as such my urologist has had me sign a letter that he informed me of these concerns.
In additions, in the fall of 2007 prior to RP, my incidence of having successful sexual relations with my wife, off "T", was at a only a slightly reduced rate than before on "T", down from 6-7/month to 4-5/month, even while under significant stress knowing I had Prostate Cancer. But in the almost 6 years post RP the number of attempted sexual relations by various means is estimated to be only around 71, with only 13 of these being successful and with all very painful, resulting in major mental blocks by both my wife and me to continue to try further attempts.
So at age 57 with a rise in PSA, I was diagnosed with PC and now at 6 years post "da Vinci" RP in January 2008, I have had only one follow-up test in February 2011 showing a rise in PSA to 0.1, but it is now back to < 0.1 at age 63, without a further rise or recurrence so far, with fingers still crossed and my urologist still allowing for "T" replacement but at a reduced amount with recent tests showing increased high levels.
At the time of diagnosis, my PSA test on 06/07 showed a rise from 1 to 3, but no further testing was completed to determine if rate of rise was this high with PSA testing inaccurate in many cases. A 12 core biopsy 07/07, showed 2 positive cores, 5% multifocal PC found, but no digital detection, Gleason 6 at 3+3, with my PC considered a T1c. With this diagnosis, my Urologist only recommended RP and one surgeon to do "da Vinci" robotic surgery with neither doctor giving the option of trying Active Surveillance (AS) first or either doing any further testing to confirm diagnosis. Yet once my prostate was removed, there was no upgrading of the PC and less involvement found. A good risk made with good information, I think not!!!
My Surgeon, head of urology at a major teaching hospital, was a very good car salesman, explaining, because of my age and health, I was an excellent candidate for Robotic RP and with his skills and number of procedures performed, I would have limited side affects from his nerve sparring surgery intended to maintain my current sexual activity he documented while off "T". Yet once he sold me a lemon, he protected his statistics and reference source by discounting what I told and wrote to him was going wrong, never responding to my concerns, but just writing to my referring urologist, explaining to him I was actually doing much better than I thought with inaccurate documentation to back this up. At my 3 month post RP follow-up with him, I was so put off by his trying to convince me too, I never returned to him for further follow-ups and only wrote him further letters, which he also never addressed my further concerns expressed in them either.
Fear ruled the day and I did not get a second or third opinion or was referred for consultations on other treatment options. From diagnosis to surgery it was only 6 months, no where near enough time to fully research the subject, now knowing I would have had a lot of time to spare.
This hospital, as found, also does not have any back up means to document or record their operations and as such, the only documentation of my surgery is a short 2/3 page note signed by my surgeon, his intern assistant and a third doctor who did not appear anywhere on the list for the operating team. This note, with no complications noted and my condition good did reveal 2 concerns, with both at least potentially having some major implications. Also with my surgeon telling me he would be doing the procedure, if as skilled as he said he was, the results below tell a much different story and with some other stories showing similar results, but many not, as I have heard from other patients of his. For all I know, I likely was used as a human Ginny Pig for some interns to practice on. No one is talking, and none of my complaints were follow-up on or kept confidential by his hospital. Even the California Medical Board told me they were discontinuing my complaint for these reasons: "the care rendered in this case was consistent with the standard of practice in the community", which could be attributed to the interns now working on their own in this area having been past assistants or students to my surgeon and learning his poor practices. Intuitive the maker of the "da Vinci" was also contacted, but did nothing.
The following are the results of a very bad day for all involved at this major teaching hospital, where I should have walked out of when I was first placed in a long, very impersonal assembly line of patients, waiting and being prepped for surgeries that morning. Even the operating room looked more like a mechanic's garage with a "da Vinci" looking like an older model, not like the ads I had seen for it. A machine, whose manufacturer Intuitive Surgical, is now under fire from a number of law firms for inadequate training and flaws with some of their units:
- A badly damaged vein and nerves in left wrist from a failed IV attempt still sore today with numbness radiating into hand and 1 steroid injection helping for a while with pain an numbness now returning and a further injection requested;
- Scratched right eye, very sore after surgery, but yet to cause any sight issues as of the date of this synopsis.
- Damaged and chronically sore penis and urethra from cutting it to install the catheter, with infection resulting, much scaring, with it scarring closed 6 months post surgery with further damage from a new catheter placed for 10 days, with 90 days self insertion following, damages from the penal clamp and condom catheters used while totally incontinent for 3 months post RP and from the penal pump and constricting bands with it now having a split steam dribbling on pants and floor when urinating. It is also very sore when attempting a sexual encounter and having to inject it to do so;
- Totally incontinent post surgery wearing a penal clamp and condom catheters, down to 4 pads/day-1 year post surgery after 19 physical therapy (PT) sessions, with constant rashes from using pads along with urinary tract infections and from using anal weights to do Kegals and now a biofeedback machine to help improve these and learn to relax these muscles constantly stressed. This further caused additional penal damages and chronic soreness (see #6 below for further information);
- Hernia surgery on 04/22/2009 as a result, 1 year post RP as found is the normal time frame for these to develop, with mesh concerns and pain remaining and radiating into left inner thigh;
- AMS AdVance incontinence sling surgery on 02/17/2010, 2 years post RP, which is not fully effective and now with chronic pelvic floor pain and constant involuntary pelvic floor muscle contractions resulting from sling, I am beginning to leak more at over a pad/day average. But to avoid the previous rash issues, I am using several paper towels/day instead of pads. I have had 18 more PT sessions and was prescribe a biofeedback machine with these beginning to help, but after exploring other options with my surgeon at UCSF who installed this sling in San Francisco and in the hope of avoiding possible further surgeries to remove and replace it with an artificial sphincter, she has performed a further surgery on 12/11/13 removing the balled up inflamed sling ends to see if this helps in lieu of taking the whole sling out at this time. She also has requested more PT. (Note: this was my 5th surgery needed to correct the bad affects of the original PC RP)
This was apparently another mesh issue; my doctor takes full responsibility for and admits nerve damages and pain are the cause of my involuntary pelvic floor muscle contractions, which are also contributing to the excessive pain I am experiencing. Urgency issues have also developing over time now causing more leaking in bed, having to get up most nights to go and periods during day needing to go every 30 to 45 minutes. Urgency episodes do result in sudden leaking when trying to find a bathroom and I am now on medications showing some signs of diminishing this issue;
- Emergency intestinal surgery on 05/10/2011, 3.5 years out from my RP to clean them of scarring and banding from this surgery, causing constrictions and my now having irritable bowel syndrome possibly as a result. But this IBS may likely also be resulting from medications taken from several Worker's Comp Injuries and stress from chronic pain attributed to these injuries and this PC and it now having been again significantly irritated on 12/11/2013 due to anesthesia needed in last surgery; (Note: a CT scan of my abdomen at the time initially showed Ileocolic Intuususception in the lower center of my abdomen, a constriction of the small intestines where one part is sucked into the next like when pulling off a sock and all the pain located in the lower left side of the abdomen.)
- Surgery on 08/20/2012 to remove a painful suture from the hernia repair mesh 4.4 years out with the mesh pain still present and radiating into inside of left calf;
- ED permanent with Viagra penal rehab failure and reduced penal length and girth resulting. Failure of a vacuum pump, due to penal damages and pain resulting. Painful Injections together with Viagra only about 25% effective due to much penal pain from damages above present, much pain on orgasm from seminal vesicles scarring, inadequate or short term erections possibly from penal atrophy, premature ejaculation from lack of use, with all such a turn off for both my wife and I, we are no longer tying to have relations.
- Chronic groin and low abdomen pain from internal scarring from RP, Hernia, intestinal repair, hernia suture removal and sling placement and repair surgeries;
- Rectal scarring and pain from biopsy, anal weight training and previous hemorrhoid treatments and following hemorrhoid problem due to constipation from pain medications taken for RP pain issues and orthopedic Workers' Comp Injuries;
- My surgeon also missing a piece of prostate during surgery, having to go after it after removing the main part, thus breaking the capsule holding in PC and possibly missing other pieces leading to concerns for recurrence. Note: this piece was near the bladder neck where your nerve bundle controlling erections is also, which could explain why mine was not sparred as promised;
- Disturbed sleep and Stress, Depression and Anxiety with significant psychological treatment not providing much relief, with all these complication, chronic pain and limitations a constant reminder. Just the limitations caused by the ED with all the other issues caused are a major influence on libido and thus also reducing the desire to remain sexually active.
I am now Industrially Disabled and Retired in December 2009, mainly from orthopedic injuries from being firefighter, but finding PC was work related and studies showing firefighters having a higher probability of getting it than the average population and no prior history of it in my family. It and its limitations are now causing major disabilities to trying to do any work or enjoy retirement too. Since getting PC and suffering most every imaginable complication of RP, I have volunteered as ACS Man-to-Man Facilitator, am a mentor for Firefighters Cancer Support Network (FCSN) & You Are No Alone (YANA), Driver for ACS, Road to Recovery and was a Consumer Reviewer on a Scientific Review panel, reviewing, for the Department of Defense, Prostate Cancer Research Proposals for receiving part of the $80 Million in Federal Funding each year. With DOD's main theme to find less invasive methods for detecting and treating only aggressive forms of PC, while leaving the indolent forms, like potentially mine was alone.
As previously mentioned, I was a Firefighter, Peace Officer and Forester working for CAL FIRE from June 1987-December 2009.
At age 40, in 1990, I was diagnosed with (BPH), where because of my enlarged prostate and not due to my profession, my urologist felt I should also begin PSA testing and digital screening for PC, which was earlier than what ACS recommends. It then took another 20 years later, in 2010 and after contracting this disease, when I found out why it is important and why I do recommend all brother firefighters should start screening around age 40. Where ACS recommendations today still have yet to break out firefighters for starting at an earlier age than the standard age of 50.
As found in 2010 at age 60, while being examined by a Qualified Medical Examiner (QME), for another Workers' Compensation Insurance (WC) injury claim, this doctor's questioning began to focus in on my PC. Once he discovered from my medical records I was a cancer survivor, still experiencing a significant number of complication form it, he asked if I had ever filed a WC Injury Claim for it? After answering no, he went on to informed me my PC likely would presumptively be considered work related and he recommended I do file claim for it. A claim, which took another 2 years and two further QME examinations to be accepted as work related by my former employer, with State Compensation Insurance Fund (State Fund) doctor shopping trying to reduce their liability for it. His rational, finding I had no family history of it, was based on several studies showing where firefighting does increase the risks for contracting it over the general population and from the cancer presumptions for Firefighters found in both state and federal codes.
Once learning of this risk and with my already being a volunteer for The American Cancer Society (ACS) and a Mentor for YANA and the Firefighters Cancer Support Network, I became an advocate for ACS listing firefighting as a risk factor. But even after providing them with these studies, available on-line back in 2010, it was not until just recently have they begun listing Firefighting as a risk factor for contracting PC.
Although ACS has now identified this risk, they are still not using it is as factor for recommending screening earlier than age 50. Where after my several years of volunteering, mentoring and facilitating a Man-to-Man group, this has allowed me to run across number of firefighters under age 50 who had contracted PC. Finding these other brother survivors, I have also begun to believe all males in my profession should consider starting screening at age 40 or earlier and will again begin lobbying ACS to add this risk factor for starting screening earlier, finding they haven't listed it yet.
Then in 1992, at age 42, I was also Diagnosed with mild Hypogonadism and placed on Testosterone "T" replacement to continue to do my very strenuous Job. Something, which later became a major concern for My Urologist, after my diagnosis and treatment for PC, especially when I requested he allow me to return to using it. After my diagnosis, he did stop this treatment, not because using "T" may have had anything to do with my contracting this disease, which it does not, but that it can cause aggressive metastasized PC to grow and removing "T" can cause tumors to shrink. So when requesting he allow back on it after my RP, I did have a difficult time convincing him my returning to using it would be safe. It took some 9 months after my RP and having 3 good PSA test showing <0.01, while also his receiving the results the biopsy of my prostate, after removal, showing no upgrading of my cancer with less involvement to get him to again prescribed it.
Once back on it, I believe was the turning point for my beginning to build pelvic floor muscle mass, using both anal weights and being in Physical Therapy to start seeing some significant slowing of my rare case of being totally incontinent following my RP, finally reaching a 4 pad/day usage by 2010, 2 years post RP.
So as previously explained, in 2007 at age 57, with no family history of PC, I was diagnosed with a form of it, as I would later learn, it was likely indolent. Something, that would have been good for both my Urologist and Surgeon to have let me know of before they lead down a hasty road to the disastrous outcome, which can be found in my earlier posting and where I am hoping these postings will help others to not be so hasty in their decision process.
Although disastrous, this has not change my belief in early screening for early detection. Where if you decide to start, you definitely need a Urologist who is up to date on current thinking, knows of all the forms of this disease, knowing of all the treatment options, and is willing to send you to all the specialist needed to help you determine your best treatment option, not one they directs or prefer you do.
Unfortunately at the time of my diagnosis, I do not believe my urologist fit this description, but has definitely changed his attitude now. Where after my yearly screening for PC in 2007 by him and using the results of only one PSA test, he determined I had rapid rise in my PSA from 1 to 3. Results, which may or may not have been correct and likely were not a valuable predictor of the rate of growth or the need for a biopsy. With a significant number of other factors affecting PSA test results, making the results of any single test highly unreliable and questionable, having a series of these tests under the same conditions, same time of day and at the same lab is significantly important for confirming any change or rise, where these other factors can be ruled out.
But without any further test, my Urologist just used this one to confirm to me, I would need to have a random 12 core biopsy in his office. Something I am now a firm believer was what resulted in my disastrous over-treatment and not the PSA testing. I have therefore, become a strong advocate for avoiding any random biopsies performed in your Urologist office, where the science has improved dramatically beyond performing these and where having the latest 3T MRI guided biopsy provides a much better option and results.
With these biopsies, there is significantly less chance of infection and nerve damage with fewer stick needed that are guided to any lesions seen. Where there is better chance of finding all cancer within your prostate in its earlier state, especially finding those aggressive forms of it needing to be treated, while avoiding damage to healthy tissue. So, with this new science, and unless it shows a strong evidence of aggressiveness, confirmed by more than one opinion, I would then only recommend going on good and well recommended Active Surveillance program be the first step in any treatment option chosen. Why start at the top of the treatment options, like I did, only to find later my cancer was likely indolent with no way to turn back the clock.
But my clock started ticking when my Urologist, in July 2007, using just this one PSA test, indicating the possible rise above and without his doing any follow-up testing to confirm this result, convinced me I needed a random 12 stick biopsy performed in his office. One, which did result in a mild infection, where I was not only very uncomfortable from the pain, but was also having to deal with constant leakage, very irritating to the hemorrhoid tissue left after I had these removed. As found, he then showed me where I did have Gleason 6 multi-focal PC in only 2 positive cores with only a 5% involvement mainly in one core.
From there and without an explanation of what my Gleason 6 meant, he referred to the head Urology Surgeon at a major California teaching hospital in Sacramento, CA. There, this overconfident, good salesman continued pushing me down this disastrous path. Convincing me I was an excellent candidate for having a "da Vinci" Radical Robotic Prostatectomy (RP) and scheduling it in January 2008, only 6 months after my diagnoses. Also, when explaining my treatment options, he never explained what my Gleason score meant either, only explaining because of my age, I was not old enough to consider Active Surveillance and removing my prostate now was my best option.
He then continued to explain, due my early diagnosis and my being in excellent health at that time, he was expecting a good outcome, with few if any complications. Something, which he led me to feel fairly confident he could produce, especially after hearing the numbers and rate of these procedures he was performing and with his statistics provided showing he was not producing any major complications.
Where once out of my RP, my prospects seemed pretty good for no recurrence, with dissection my prostate showing no upgrade of my PC and found with less involvement than originally biopsied.
But of course by then, the damages had already been done, knowing now I should have both waited and had a second opinion, with many other options never considered or discounted by this surgeon.
Today I am over 7 years post prostatectomy with my PSA testing every 6 months having remained at <0.01, with only one scare in 2011. Where after this test, my lab results came back with a slight rise back to .01. Yet this scare was not unexpected and has remained a concern of mine since reading my surgeon's operative report. From this report, I found where my surgeon may have left something behind, finding he initially miss a peace of my prostate and had to go back after it. Therefore, if missing one piece and breaking open the prostate or this capsule containing the cancer, not taking it out all in one piece, what other small pieces might he left behind or cancer cells escaped. But I am hoping he did get all of it and am hoping this one rise in PSA was only attributed to a lab error, which has not again been repeated to date.
In also reading this short two third page report, with it listing no complications and condition good, as previously explained in my update of 2014, this report was far from the truth. As found, my long list of complications keeps growing, having many in the rare category and some even life threatening. Having all these was totally unexpected, after receiving my surgeons great sales pitch and which I am hoping I have survived the worst of it by now. Fortunately, the additional early diagnosis and surgeries or treatment for these 3 complications likely saved my life, but although successful, they by themselves have left me with their own additional negative complications. Something to consider if deciding to move forward with any treatment for your PC, where just having an RP can be life threatening, where things do go wrong. Even the need to convert from the robot to open surgery, as explained by my surgeon, was possible and he had me sign off on him doing so if found necessary
As found, though, statistic may only be what your doctor has made or wants them be. Where at my 3 month follow-up, complaining of a significant number of bad complications, this surgeon spent the whole visit, not addressing these, but explaining how well I was doing. During this appointment he continued to tell me I was doing much better than what I thought and that soon all these issue would resolve themselves. Something, which was not an uncommon report heard from other patients of his I had met through my Man-to-Man group.
Additionally after this visit, he then wrote to my referring Urologist a letter explaining the same thing, showing very exaggerated findings to prove to him how well I was doing. But with this very inflated information, it only made it more difficult having my Urologist believe treatment of all these complications was necessary and convinced him to make further referrals to the Surgeon. Something that has changed over the years with my Urologist having to deal with these increasing numbers of issue for over 7 years now.
Further, disputing my surgeon's short 2/3 page report on my operation has been very hard to do as well. When his hospital has reported they have no other means to back up what may have occurred in the operating room, with only his report to go on. You would at least think the "da Vinci" robot would have some sort of recording device to review how it performed or provide a learning tool for those learning to use it. Yet as they have reported, there are no other records, either manual, electronic or otherwise to dispute what he reported or more importantly what he did not report, which may even have revealed he wasn't at the controls at all, but just supervising some intern learning how to operate it. Also something to consider if going to a teaching hospital for treatment. Don't become someone's Ginny Pig.
So instead of getting better, as he explained I would, my list keeps growing. Also, as earlier explained, the additional treatment needed to resolve my complications from his RP have, by themselves, not been without there own complication needing continuing treatment and further operations. All just adding to or combining with what has already made life a challenge and a continuing effort on my part to look for solutions, with some yet to be developed.
Therefore, without covering my previous list, I will just cover the more serious and recent problems to develop.
- At 6 months post RP, I had to make a trip to the emergency room to open up my scared and completely closed off penis and urethra, where my bladder was ready to explode, needing 3 months of home therapy to ensure this did not happen again.
- Then in 2009 and 2011, I had 2 emergency surgeries, where my intestines became blocked or constricted.
To add to these surgeries, I have had 3 other corrective ones:
- The first was an extremely painful inguinal hernia needing immediate repair.
- The second was the removal of even more painful scarring and banding on my small intestines damaged during my RP.
- One was to slow my incontinence with an AMS Mesh Sling.
- Another to repair the mesh in AMS Incontinence Sling used, found so inflamed and swollen, leaving me unable to ride a bike and was constantly using narcotic pain meds for this issue. Where today I still have pain in the pelvic floor area along with constant involuntary pelvic floor muscle spasms remaining due to the nerve damages resulting.
- The last was to remove defective sutures holding my hernia mesh repair in place and the remaining pain from the initial repair left.
Recuperating from any one of these surgeries, was significantly longer and harder than what I experienced with my RP, with again the first 3 issues presenting a much greater threat to my life than what my form of PC ever could have had. With all the damages to my intestines, the medications I am now taking and the stress resulting, I have also developed Irritable Bowel Syndrome in 2012.
With these issues now somewhat behind my wife and me now, an additional complication is still remaining and has had us questioning, for over a year now, whether I should have a further surgery or not. With my new surgeon in San Francisco giving me three options to correct my current problems, he has given us no guarantees it will bring back our lost sexual intimacy. We now have had over 7 years of disappointing experiences trying all but a surgical option to correct my ED, now having to resort to using both Viagra and penal injections to have an erection that may or may not last or be sufficient for penetration. I not only have experienced a loss of length and girth of my penis, but much pain and changes in orgasms. My wife has also being continually disappointed and is turned off by the process to achieve erections. So with her also experiencing the effects menopause, all of this has resulted in a significant drop in the number of attempts at having relations through 2013.
But then to top this all off, last year in 2014, with the accumulation of damages to my penis, I was diagnosed is Peyronie's disease. This scarring and bending of my penis likely has resulted from first trying to control incontinence by using both a penal clamp and condom catheters every other day for more than three months post RP. With my then also having the damages resulting from the emergency procedures and therapy needed to reopen my scarred closed urethra and then likely the trauma from the two incontinence surgeries all resulting this new bending preventing intercourse now.
As proposed, sutures can be placed to permanently pull it back into place or I can have one of two penal implants placed. One that inflates where the other leave you with a permanent erection, which just needs to be bent into position. None of which seems appealing, with significant recuperation and possible further loss of penal length and more pain added from new scar tissue left. You only need to go on line and watch these procedures to know they will be painful to recuperate from and like my having hemorrhoid surgery, you cannot stop using this part of your body to let heal.
Further, and for unknown reasons, my Urologist has found my replacement testosterone "T" levels are varying greatly, needing constant monitoring, so he will allow me to continue to stay them. For about the last 2 years and after a significant rise in T levels, well above normal discovered in 2013, he has tried changing the amount of my topical replacement, only to find further levels varying from still high to well below normal. These variation can have significant effects on my libido, one way or the other, and does leave me very tiered at times, without much energy or even the ability to sleep well. Yet whatever the problem may be, continuing to use "T" is important to my remaining active and as found, convincing my urologist to allow me to continue on it has been difficult. As found and important for those of us diagnosed with PC, not having "T" in your system can have its own significant negative side affects, which I had prior to my PC and is experience by those being chemically castrated, where keeping active is hard to do without it, but very important to your overall health.
The important message as I have found for helping me convince my Urologist to allow me to stay on "T" is that eliminating it only becomes important when recurrence or initial spread of aggressive PC results in metastasized disease. Where studies have found, it only takes a small amount of "T" to cause metastasized PC to grow, with anything extra not having any impact. Hopefully future tests will show a leveling off of my "T" and reduce the concerns of my urologist and his concerns some other condition is not affecting these levels as well.
As for my Workers' Compensation PC case, it still remains accepted as a work related injury since 2012 from the exposures being a Firefighter/Peace Officer, but I have yet to see a final settlement proposed, after filing my claim in 2010 and contracting PC in 2007. Further, in 2013, CA. Labor Code was changed allowing for a significantly negative Treatment Utilization Review process to be instituted. With this system in place and the amount of additional paperwork and time needed by Workers' Comp Doctors to comply with it, significant numbers of doctors in the state are no longer taking Workers' Comp Patients and have been dropping like flies off the established Medical Provider Networks Employers are supposed to provide to treat their injured workers. Therefore, the threat of recurrence has never had a greater significance than now and even attempting to have the further surgery, I have been debating, will likely be denied and/or a competent surgeon not found to perform it if my present doctor discontinues treating WC patients.
This reform of the Labor Code in CA. not only has a very negative impact all the States Injured workers, but the past reforms of the States Medical Malpractice Laws have left patients injured by doctors, like I was, with no where to turn for restitution or to force doctors to improve their skills. Overselling patients into having unnecessary treatment has for many years now been increasing at a very high rate, with more men now being screened for PC than ever before.
As previously stated my type of treatment has been capitalize on by U.S. Preventative Services Task Force (USPSTF) who has recommended men not get screened for prostate cancer, partly because it results in much over-treatment like I had, but this over-treating prostate patients can and does result in many men experiencing significant negative quality of life altering side affects. Where the statistics for just having an RP show, where more than 50% of men having one, end up with worse side affects from this operation than anticipated or as explained in my case.
So recently I have begun wonder, with the very high cost of purchasing one of these "da Vinci" robots, how the smaller hospitals near where I live in CA. have begun to find ways to afford them and second provide the exceptional surgeons to operate with them. High volume selling for the need to have an RP by robotic surgery must still be the standard practice and if a major teaching hospital in a large metropolitan area like Sacramento cannot get it right, then my concerns for these smaller communities getting them just continues to grow.
From my again being a Consumer Reviewer on a Scientific Pear Review Committee for the Department of Defense in 2014, reviewing PC Research Proposal for a piece of the $80 Million in the annual Federal Funding allocation for PC Research, I continue to hope that one of their overarching challenges will be met sooner than later by being able to distinguish Aggressive from Indolent disease and then develop treatment to just treat the Aggressive forms of it.
Again, screening is not necessarily the problem, but what is done with the results and we who have it and the other 233,000 of us diagnosed with it each year, we still do not what to be one of the 29,000 who died from it last year. But with these statistics and knowing we will likely die of something else before our PC gets us, why add the risk of treatment to your issues, where we are all in need some new screening methods developed, which will meet DOD's overarching challenge above. But until then, I remain a firm believer in Active Surveillance as the first course of treatment for those who may qualify, before diving into something you may regret. Time is on your side to wait for research closing in on the DOD goals above for detecting and treating only aggressive disease.
As previously mentioned, I was a Firefighter, Peace Officer and Forester working for CAL FIRE from June 1987-December 2009, where before moving into management, I was also an Emergency Medical Technician (EMT) for the Department and a Rank and File Representative for our Union. I also served my country in the Air Force during the Vietnam War and spent 15 years in the Federal Forest Service performing most of the same duties I did for CAL FIRE in our California Forests. Where some of these duties have been shown to expose you to a number of carcinogens and per studies increase you chance of contracting PC over the general population.
So with all this service provided to the citizens California and my work protecting and enhancing their natural resources, you would think, that this service would come with some recognition, not an all out assault on me and my fellow Safety Professionals simply because we may have become injured performing our duties. Where in our professions, being injured is common and for many, our injuries can prematurely end careers we had worked hard to obtain and loved doing.
This is not an assault by the public we served, who on a regular basis have thanked me for just doing work that was rewarding enough just in itself. But an assault by the two most recent administrations, they happened to elect into office. Both of which were spurred by some need to reformed to death the California Workers' Compensation Systems. With Governor Schwarzenegger having begun these reforms in 2004 and then having Governor Brown furthering these very negative reforms into 2013. Both not just going after State Workers, who they have been successful in taking away a number of our other benefits too, but all workers in the state, taking away a very important safety net, if injured while working in California. This System has now been so badly eroded, that it neither can help Injured Workers become employable again or like for myself, just being able to live comfortably into my early Disability Retirement not having my injuries properly treated or some not able to be treated at all. Without the necessary or proper treatment, early retirement is pretty much assured, leaving work injured, unable to continue on until full retirement benefits are realized. Where these reforms also allow the Insurance Industry, supposedly handling our claims, to provide very limited injury compensation, which in no way makes up for our lost income or the loss of full retirement compensation.
Therefore, with my previous stories on YANA explaining how disastrous my experience has been, since being talked into having a "da Vinci" Robotic Prostatectomy, knowing now I likely did not need it and should have tried Active Surveillance instead, I will not be repeating myself here and you are welcome to read those past stories. All I can say is "Buyer be Ware", knowing not all "da Vinci's" turn out good, with more than half the patients receiving one, finding they have worse complications than explained and expected, with open surgery just as comparable and successful in removing all the cancer and maybe without all the complications possible by robot or as I have found by a surgeon not competent enough to operate it.
Even when choosing a Urologist with hundreds of these procedures under their belt, a consideration you need to thinks about when choosing one. If one, having completed a number of these procedures, is still practicing bad techniques each time and not improving or learning from their mistakes, you can expect to end up in the hands of an overconfident surgeon who likely has unfounded statistics on their success rates, like I did. Where again, to keep the flow of patients coming in from my local Urologist, he wrote a very exaggerated letter to him explaining how well I was doing and as he stated in it, I was doing much better than I thought I was, at my 3 month post RP exam. Which was far from the truth and is why I never returned to see him, filing a complaint with California Medical Board against him and his hospital instead.
But with his hospital having zero back up means to document what this Surgeon reported he did, in his short 2/3rd page note covering my surgery and with no one willing to talk, the Medical Board had nothing, but the results of my surgery, I wrote to them about to go on and refused to investigate my claims, taking his word over mine. As it was, after trying to write to him over my issues, he never responded, made any admission something may have gone wrong or apologized, but had his attorney send me a nasty letter instead.
But not going into what I have already written over what damages he has caused me, I would like to dedicated this update to my fellow injured California Firefighters, where all Cancers, due to our exposures on the job are considered by the law to be presumptive injuries for our profession. Where the increased occurrence of cancers are not specific to just us guys working in this profession, but where Prostate Cancer in my case does occur for us at a much higher rate than the general population.
So starting in 2003 after a recall of Governor Davis, Arnold Schwarzenegger was sworn into office November 17, 2003. Where he immediately started targeting us state workers, finding ways to reduce many of our benefits and cut needed positions. But what was significant about his administration, was his reforms to the Workers' Compensation Laws signed into effect on April 19, 2004. These reforms not only impacted state workers but were also very detrimental to all injured workers in the state, providing significant relief to the WC Insurance Industry reducing the amount treatment and durable medical supplies they had to provide with increased ability to deny what the injured worker's doctors requested. But to cause the almost total destruction this system's ability to provide adequate treatment to Injured Workers was the further reforms signed into law by Governor Brown on Sept. 18, 2012, with the bill, SB 863, taking effect on January 1, 2013.
Per the intent of this reform, it states the goals are supposedly "to improve the delivery of medical benefits. By requiring the use of evidence-based medicine to guide treatment decisions and having disputed medical treatment decisions settled by independent medical reviewers." Where SB 863 says "it addresses that goal", but in fact it gave overall control to the industry to provide initial reviewers the records they will be reviewing and added a ridicules amount of new documentation needed for most doctors to complete to justify the treatment requested. But also in most cases, their needing to complete the same documentation each and every time the same treatment is requested again, no matter how many times it was requested and approved in the past or even had been recommended by an Authorized or Qualified Medical Examiner (AME or QME). Examinations patients may have been required by the industry to attend or by a request from the Injured Worker's WC Attorney. With even new documentation needed for every prescription written, whether a medication has been used for years or not and with many also needing a new review for receiving refills provided in the original prescriptions. Yet having these also then denied a common occurrence and needing to be appealed too. Where with all these initial or continual denials and then appeals needed, both the doctors and worker's attorney are required to provide additional information to the supposed Independent Medical Reviewer, selected and paid for by the industry. Where in past reviews I have had, they were not even sent to the type of specialist needed for a adequate review of the issue at hand. Where in one significant case, they sent my documentation over this PC case to a Sports Medicine Specialist for review and not a Urologist, which was really needed.
So with most doctors simply having no time out of their busy days to respond to reviewers questions or even answer their phone calls, this has just made treatment much easier for the industry to deny, but has resulted in a more significant problem for Injured Workers below.
As stated for this law it also indicates "The reforms also improved the Medical Provider Networks (MPNs) by improving injured workers' access to network physicians." Where in fact, the law has failed miserable to do so, having just the opposite affect. With changes in federal laws increasing the numbers of individuals now having access to medical insurance, most doctors are already stressed by the amount of time they can devote to each patient seen. Where for patient with private insurance, they only need to worry over meeting minimal requirements contained in the much less complicated Utilization Review of treatment under States Managed Health Care Laws. So once adding the significant amount of documentation needed to deal with this new 2013 Utilization Review of Treatment explained above under the Labor code, going well beyond anything required under the Health and Safety code governing Managed Care, this began a further mass exodus of providers off these MPNs. Which because of Governor Schwarzenegger reforms in 2004, these MPNs had already become depleted, although these new reforms indicated they were intended to solve this problem, they just made it worse. Where a little thought by the legislator who wrote it may have anticipated this unintended consequence, if indeed he was making this change to help Injured Workers and not intending to help the Insurance Industry avoid providing treatment after they supported his last bid to be elected.
So by 2016, State Compensation Insurance Fund, handling State Worker Injuries, including mine, found their MPN decimated, no longer meeting viability standards. As such, they finally had to disband it and contract with Harbor Health, a private company to provide one. But as found, this MPN, with its long list of essentially only Emergency Treatment Providers, providing just initial treatment needed for an injury and many physical therapists also listed, it hardly has anyone to left to provide ongoing care after the initial injury has been stabilized. But even for therapy under CA. Law, it only allows for a limited number of visits per injury, where having all these therapists does nothing to help me having met my limits already.
Therefore when searching for non-emergency providers listed on this MPN, the only ones found, after doing a further researched on-line, tended to show very poor patient ratings for those left and as such in an attempt to keep their practice going, were still accepting WC patient. So for me, even if I could find ones that are somewhat competent to treat me, the next significantly issue found, was they are all generally located hundreds of miles from where I live in the largest cities in CA. This makes traveling to see them on a regular basis as needed almost impossible, where having complications from my injuries significantly interfere with how far I can travel at any one time.
So in 2014, after a long battle to have a number of Percutaneous Posterior Tibial Nerve Stimulation sessions to help with my Incontinence left after my RP approved, the only place found to do these treatments was almost 200 miles away. Where making regular trips to UCSF in San Francisco from well above Chico, CA. would not be possible and as such I never have had this therapy. So with the number of complications just increasing after 8.5 years post devastating bad "da Vinci" RP, with my unable to complete this therapy, additionally, I need to have at least 2 more operations needed to fix what the RP broke. But I likely, I will have significant difficulty having these completed now under these 2 reforms and especially by not being able to find the competent specialist needed to do each individual surgery. They are definitely not available as found listed on this new MPN.
Leading to this RP and as explained in the past, my diagnosis occurred in July of 2007. As found, I was only a Gleason 6, with multi-focal T1c PC found with only 5% involvement, in only 2 out of 12 cores taken and where the biopsy, of my prostate, following my RP, confirmed this same result, have no upgrading. My RP was in January 2008, with neither my Urologist or the surgeon, he recommended, questioning this diagnosis, never taking further tests and then talking me into surgery and out of Active Surveillance. Where after informing my employer, CAL FIRE, in 2007 I had PC, no one from this Department ever informed me, at that time, I may have a Presumptive Work Related Disease and should consider filing a Workers' Comp claim for it.
Therefore, once I had already gone under the knife for it and began seeing and increasing number of complications resulting, having 2 operations already intended to try and fix some of these, a QME for another work injury in October 2010, finally informed me of the likelihood my PC was indeed work related. He also recommended that I should file a claim for it. Probably a bad idea, if knowing now these new reforms were right around the corner. Yet it then took until February 2012 and after 2 more QMEs looking at this same issue, to have State Compensation Insurance finally accept this injury claim as work related. Once they had, I already had to have 2 additional operations to fix further RP related issues, again paid for by my private insurance. But with the effects of the first reforms having a significant effect on the numbers of providers remaining on the MPNs, I have never found a WC Urologists Primary Treating Physician, within a 200-mile search of where I lived, who will take on full responsibility for my overall treatment and referring me to the specialist I need, leaving my private insurance still holding the bag. Where in December 2013, I had my last and 5th surgery to repair RP complications. Where then, under the new WC Utilization Review reforms that year, this operation was effectively denied with a failed appeal of that denial assured by what I mentioned above a Sports Medicine Doctor performing the review. Where I had been seeing a competent doctor to perform it at UCSF, but also not having this doctor versed or willing, to take on the system and her doing the necessary documentation to try and get it approved. But today she is no longer an option to remove my sling, no longer being at UCSF, a facility still accepting WC Patients, but where their individual doctors are not listed on any MPN and don't know the system for receiving approvals.
So for my YANA update, I would like to report, that other than a slight possible increase in PSA back in 2011, all PSA tests since have resulted in readings of <0.01 and although my surgeon botched my RP and potentially could have left pieces of my prostate behind, I have yet to have my PC reoccur. But for solving my need for finding a WC Urologist, I have had no luck so far, with non even listed on the new Harbor Health MPN. Where I have recently lost my Internist, who was at least prescribing some of the medications I needed for my RP complications. He has decided to leave California, because he has no longer found dealing with the Managed Health Care and WC System here to be profitable and desirable. I have had an all day trial in November 2015 trying to settle 4 individual, but some connected WC Injury Claims including my PC, all ending up in litigation since I left work on Industrial Disability Retirement in 2009. Where this trial only resulted in my having to have 3 further AMEs, in May 2016, again looking at these injuries with one Urologist specifically for my PC claim and the two others partly delving into it as well again having some related issues.
Fortunately, the Urologist who examined me for just my PC, did give me hope of a new treatment for my Peyronie's Disease that would just entail an injection versus having an operation. But in doing so, I would give up having an implant to also fix my permanent ED and still would need injection therapy to have erections. He also, confirmed that I will still need my failing AMS Incontinence Mesh Sling removed and replaced with an Artificial Sphincter. Yet, with my unable to find Urologists on this new MPN to date, if one is eventually found and as I have already found consistent with the providers still listed on it, they probably will not have the qualifications and experience needed to remove all of the mesh making up my sling and not be able to replace it with an artificial sphincter that would then be needed. With any Mesh left, I may still be left with the significant pain it is causing and the involuntary pelvic floor muscle contractions I have been dealing with since it was placed in February 2010.
Where, without competent doctors available to first do and also request to have this operation be performed, it cannot be denied like the last one. Therefore, without a denial in hand this time around, I cannot go to my private insurance to have them approve it and have it completed by a competent doctor needed. Where the only way out of this "Catch 22" issue is to have my last trial result in a Walk-Away settlement with State Fund, which their client CAL FIRE and the State of California, in the past and likely in the future, will not be agreeable to. The best, I can expect is a much smaller settlement, paid over time and with Future Medical Included, but as I have explained, this medical treatment will likely be unavailable under the present laws with no providers willing to take on my WC injuries.
Even if a larger Walk-Away settlement was possible, now that I have turned 65 in 2015 and past age 62.5 year in 2012, Medicare has now entered the picture and would require most all of any settlement I receive be placed in a Set-Aside Agreement to them. With this set-aside, even including part of what was intended to cover lost income, becoming unavailable to me and going into this fund to take care of my future medical needs.
So now having a significant number of limitations on what I am able do because of my injuries, I find the need to hire a lot of help to maintain my home. Yet, again because of my early disability retirement resulting in much lost income coming in and over an 18% loss in retirement compensation, because my injuries would not allow me to be able to work long enough to receive full benefits, anything lost to a set-aside, will result in my no longer able to keep up my home. A home I have spent much time and funds upgrading. Where if now needing sell and downsize, this also will result in a significant loss for my family and me, due buying it at the height of the housing market before the recession. We have tried selling it in the past and now have it listed again, with little interest also expressed this time around due the uniqueness of it and number of stairs needed to reach the main level built into a hillside.
This is a no win scenario and for any other of my fellow workers who feel their PC may be related to their professions, filing a WC claim for it my not be the answer under today's political climate. If your disease is treatable, the real lack of available treatment or competent providers to perform and request, could result in your premature death, where the Insurance Industry under this system is more than willing deny the very treatment that could save you life. But on the other hand, if there is any possibility your cancer will result in death, you could leave your surviving family without another important safety net and that is the significant compensation provided by the State to the dependents of those Safety Employee dying on the job or form a work related injury. So without a claim filed and accepted as work related in the first place, if dying from your cancer, their is likely no way to later claim it was work related later, unless it is immediate and happens on the job like a heart attack, another common reason for firefighter deaths on the job.
In conclusion, with PC a definite greater risk for firefighters in general, I am still under the belief for starting screening for it early and not following the ACS guidelines. But remembering, wherever that screening leads, you may end up having to make some very difficult decisions on what to do about yours', if screening shows you have it. But again, with most forms of it growing slowly, you generally have plenty of time to make those decisions and you should not be doing this by yourself, but with support from family and friends as well as from information and support groups and organizations like YANA and ACS as well as the Firefighter's Support network for my brother and sister firefighter.
You should also not be doing it without more than one opinion, with every test available taken advantage of and with more than one reading of your biopsy completed. Where I also recommend avoiding any random biopsies be completed in a doctor's office, with infections a reality like I had and where new MRI guided ones result in much better and more accurate diagnosis and help if focal treatment is desired. These also requires significantly less sticks needed, thus avoiding infections and possible damage to your nerve bundle, where multiple cumulative damages could lead to ED, without even had any treatment yet.
In addition, if you meet the qualifications to avoid any immediate treatment, do not discount or pass up the benefits of going onto Active Surveillance, buying you even more time and possibly resulting in no treatment ever needed at all. But if later needed, new less invasive treatment or improvements to present treatment may become available, which cause significantly less complications than older methods. Where if I could turn back the clock, I first would have avoided all the very negative consequences of having mine removed, but as found, also been able to avoided all the difficulties dealing with a WC System, systematically attacked by our last two Governors. These attacks as explained have resulted in a system not performing as intended for and definitely cannot not provide you the professionals you really need when having this devastating disease. Again, leaving you with just another very difficult decision added to what you already face, whether to file a claim or not. Give it some serious thought and if well under 62.5 years and file one, make sure your WC Attorney is able to get you a walk-away agreement before turning this age, knowing it may take years to obtain one if possible.
But without further reforms highly unlikely, don't place any hope the system may not just get worse. After significant study of these laws and with the hope my Republican Senator, preaching less regulations is better for business in CA., I have proposed to him legislation to rescind the duplication of regulations in CA. Where there are already is Utilization Review for Treatment they request working effectively for Providers taking Private Medical Insurance under the Managed Health Care Laws in the State. Where having a separate, more onerous one just for the WC Insurance industry is not beneficial to keeping and maintaining a good healthy workforce in this state. Where also rescinding the laws requiring MPNs would then be needed, if WC Patients could then use their Private Insurance providers, who while only having to meet the same standards they already are using, would start accepting WC Patients again. But as found from this Senator's office possibly also bought off by the Insurance Industry, their excuse for not taking on these reforms is he doesn't have the staff to deal with them.
So unless reformed now, remember you have plenty of time under the present cancer presumption laws in CA., up to 10 years after you have retired to file a claim. If by them, you have completed most all of your treatment under your private insurance, filing a claim at that time may not make a big difference in receiving treatment, but still could benefit your family, should your PC end up highly aggressive and take your life, bringing into play the States Death Benefits they may really need once you're gone.
As previously mentioned, for 37.5 years, I was a Firefighter, Peace Officer and Forester with also duties as a Emergency Medical Technician (EMT) working for both the California Department of Forestry and Fire Protection (CAL FIRE) and before that the U.S.D.A.Forest Service. I also served my country in the Air Force during the Vietnam War and may have, while loading Agent Orange for them, had some exposure to it doing these duties as well. Where again my main exposures came from doing the duties of a Firefighter, Peace Officer and certain Forest Management involving prescribed fire and herbicide and pesticide use that lead to my contracting Prostate Cancer in July 2007. Hazards all Firefighters and as well as some Peace Officers need to be aware of and the reason I always recommend, they should start PSA testing early, like I did at age 40 or earlier.
Where several studies have shown how Firefighting leads to exposure by a number carcinogens doing this job and thus leading to their having an increased chance, over the general population, of contracting several forms of Cancer, including Prostate Cancer, Where at least in California it is a presumptive Work Related Injury. Knowing of this potential exposure makes it is imperative to not only wear your PPE during an ongoing fire, but also in both the mop-up and investigative stages, with absorption during all stages being a greater risk than inhalation. But with inhalation back in the engine bay by Diesel Fumes still posing a high risk as well. With those exhaust systems needing to be use whenever your engine is running in the bay. Yet for those of us who are out on the firelines, fighting wildland fires, we still have no breathing apparatus. Where we find ourselves having the potential for both forms of exposure. Yet at least now, most Incident Bases or Camps have Showers and Laundry Units, reducing the chances of absorption, but only if taking advantage of these facilities too, with shift on line from 12 to 24 hours in most case and up to 36 on occasion as I have found myself in sever times in initial attack or when trying to set up an Incident Base.
In any case, with my continuing to encourage my brother Firefighters and Peace Officers to start screened early, I also feel early screening is the answer for all men to help reduce the continuing statistics showing where the numbers of men still dying from this disease are still way to high. But where today instead of our seeing more men receiving screening, which should be the case, as found since 2012, the trends are showing a continuing drop in Screening and Diagnosis from 241,740 diagnosed in 2012 down to 161,360 in 2017, without the death rate dropping and averaging around 28,000 per year over the same time, where in 2017, 27,730 men will die from Prostate Cancer. The main reason found for the drop in screening and then this lowering diagnosis rate, was due in October 2011 the U.S. Preventative Services Task Force (USPSTF) making public recommendations that men should not have regular PSA testing with the rational it resulted in significant over-treating of men found to have prostate cancer. This was because there was then and likely now at reduced rate, still to many doctors going after every form of PC found or where many patients still believe any caner is a killer and wanting all of it eliminated whether it may be in an Indolent or Aggressive form.
Well as I have explained in the past, with my having only 5% PC involvement found, well confined to my Prostate, at a Gleason 6 and not upgraded, with less volume found after removal, my over-treatment ended with my having most every negative side affect you can get as listed by the American Cancer Society, plus a number not listed and with many in the rare category. (see my previous stories posted)
Again, with my needing so far five additional operations to fix what RP Surgeon broke, with these other operations then adding their own negative side effects, all of which has continuing to need extensive additional treatment, without any issues found from my PC itself returning. With my needing still much more treatment, after almost 10 years following my RP. Where of course with my diagnosis, I still remain cancer free, with PSA testing every 6 month still showing negative results. (Note: with my need to remain on testosterone replacement therapy, my Urologist is requiring more PSA testing than normally required, I don't mind with the side effects of having little to no testosterone much worse than having a blood test or seeing the doctor about it)
So with my having all these negative life altering impacts, I feel like I could be the poster child for the USPSTF, as someone well over-treated and well over impacted by it. Which I believe if somehow this type of treatment can be stopped, with the significant dollars being wasted on it turned away from treating Indolent disease, just the aggressive forms of it, as well as then saving on the significant costs needed to treat and try and resolve the long list of potential negative side affect from any of the present treatment options available today, the USPSTF seeing this significant saving and reduction of suffering caused would then have a very good reason for changing this recommendation. Where already as found today, more men with Indolent or low grade disease are choosing Active Surveillance instead. A Choice my surgeon left out of picture for me, likely with his big ego and needing his false claimed successes statistics to have constant reinforcement, while also the need to help pay for his Hospital's significant costs incurred when purchasing their "da Vinci" Robot he used. Where I believe, with this big ego, he may have on his own accord or possible with limited training provided from Intuitive Surgical who makes it, he either really lacked the necessary training on how to operate it himself or he let some intern play with the controls, with his supposedly teaching others how to use it. Where unless someone literally dies from blood loss, one major concern from doing open RPs and why surgeons try and talk you into using this machine, I haven't found anyone else who has had as many negative side effects as I have. But when facilitating my communities ACS's Man-to-Man program, I had the opportunity to meet several other men and some other patients of my surgeon who had more of these negative side affects than the average or normal.
So with this new story update to my 2016 one, for part of my update, I have completed my forth assignment participating as a Consumer Reviewer on one of many Scientific Peer Review Panels for the Department of Defense's (DOD) Congressionally Directed Medical Research Program uses to review and distribute funding to Prostate Cancer Research Proposals, which best meet their various goals. Where this last Fall 2016, I was invited back to the Washington DC area to participate as full voting member of my Panel, mainly there to ensure the PC patients interests are represented, where our job is to ensure those proposal with the greatest impacts for us are funded. Where for a number of years up through 2016, the Federal Government was allocating $80 Million per year to fund these proposals. But for 2017, I was very excited to see the amount bumped up to $90 Million to fund this Program. An increase I am sure all Prostate Cancer Patients and Survivors should also be excited about and I am hoping to be invited back this year to participate again. A participation, I would highly encourage any man with PC or their care givers to think about becoming involved in. Mainly, with my treatment almost 10 years ago and with many new and improved screening and treatments resulting from programs like these, having some new perspectives would be very beneficial, with participation always a very rewarding and learning experience.
Therefore, with my being someone well over-treated and that treatment's continuing major life altering negative impacts on me still being sometimes much worse dealing with it than the impacts many will ever experience from being diagnosed with this disease, there is one major goals of this program, which always excites me the most and I ensure proposal addressing it get my vote. This is DOD's goal for as many of the applicants for funding, in their proposals, are either coming up with or include some definitive means to find and distinguish Aggressive from Indolent Disease. Where this is the main goal of the proposal or included in concentrating on finding treatments for Aggressive disease found. Once we have this means to distinguish between them and can reduce or eliminate the threat of over-treatment, maybe we can have more men start screening much earlier than recommended today. With most or all men then having it found much earlier, with screening developed only looking to find aggressive disease, which is found still confined to the prostate, in low volumes, without positive margins and thus ensuring the treatment used will catch most all PC before it escapes and treating it in its most curable state. Therefore with more PC caught and treated early with a cure, we could not only see significant saving in costs, without the need for additional research to find new treatments for PC that has escaped and metastasized, with significant costs needed to meet the progression of this disease leading from Testosterone dependent to Castrate resistant and then more likely than not, death from it before something else kills the patient, with no real cure to date once it reaches this state found so far.
Where unfortunately with the statistics above showing a drop in screening, but the number of deaths remaining stagnate, I can see initially these numbers of deaths not changing the USPSTF's recommendations. Which without an increase in deaths apparent due to their recommendation occurring in immediate future, the major negative impacts of these recommendations will not become apparent and get them to reverse it, until way to late for many men not being diagnosed today. Impacts, which will take time to show up, with a rise in deaths starting when the results of lack of detections of Aggressive PC still confined to the prostate and not treated, begin to start showing up. This will start occurring when many more cases of aggressive PC begin to be found after they have escaped the prostate and metastasize, without early detection and early treatment. This is because of the slow growth rate of most PCs indicated by the ACS's statistics showing the 10 year survival rate at 98% and it likely taking this amount of time for us to start seeing increasing death rates due more men choosing or their doctor not recommending they get screened.
Where without early more and earlier screening, diagnosis and treatment, these death rates will eventually start climbing. Mainly due to most PCs progressing very slowly, you can also bet most of those men dying today and reported in these statistics, did have their Cancer diagnosed a number of years ago. Having it only being diagnosed late in life, either due to their never starting screening or not starting it until to late in life and after contracting this disease already. With the American Cancer Society still recommending most men not start it until after the age of 50. Again for firefighters and other having exposure risks, they should be started much earlier and after hearing from a friend of my wife's, one of their family members was diagnosed in their late 30s, maybe screening for all men should start at 35, as just part of any regular examination.
But as already been found by research, new and better screening is already available. Where my first recommendation is to avoid any biopsies until after a series of PSA tests have definitively confirmed PSA to be much higher than the normal or how fast it has risen since their last check. With PSA test having many factors, which can lead to false positives. Which again, with my doctor leading me by the nose and my only having one test showing a rise in my PSA from 1 to 3 in a year, he immediately had me follow it up with a 12 core random biopsy in his office. A biopsy that did lead to a mild infection, but which lasted for more than a month without treatment, with my just thinking my systems were normal for having a biopsy. Where once finding out I had one later and knowing of others where their infections lead to a hospital stays, I am also not a fan of these types of biopsies. Which in addition to infections, the randomness of these biopsies can hit and damage the nerve bundle attached to the prostate and eventually with a number of these, Erectile Dysfunction is also possible. But more importantly, Aggressive lesions can be missed. Where a better means of diagnosis is by 3D Multiparamic MRI guided biopsies in a hospital specializing in these and where the chance of infection is less. With these able to finding most all Aggressive Lesions, reducing the number of sticks needed, thus reducing the chances of infections or the possibility of ED.
But again with the 10 year survival of all PC found today being 98% and as such even with PC found small and growing very slowly and even if it just falls over the line to whether it is Aggressive or not, I would hope more doctors would increase the numbers of patient allowed participate in Active surveillance, with even someone with Gleason 7 able to participate. Where if their diagnosis is a 3+4 rather than a 4+3, I feel these candidates should be putting off treatment as long as possible, with many good Active Surveillance programs now available and as I have found from my participation as a consumer reviewer and with increased funding for research, the future is bright for a cure and much less invasive screening and treatments to be developed before you may need to be treated if at all. Why not take the chance, your odds are well in your favor, but if treated, your odds of having significant negative Side Affect are much greater, with 50% of men saying their side affects were worse than their doctors had explained they would be. With mine 150% to 200% worse.
Where in addition, if your doctor today has not tried to talk you their patient with a Gleason 6 or lower out of treatment and into AS, like did not happen to me, I definitely would get that second or third opinion and possibly a second read of your biopsy. Where again if random, I would also go for the MRI guided one to make sure my diagnoses was the best available today. With a 10 year survival rate for all PC, even in Aggressive forms at 98%, what do you have to loose by stepping back and taking your care into your own hands and not allowing it to be dictated by some doctor. A doctor who you do not know if they do or do not have your best interest in mind, which lead me to where I am today or are listening to the USPSTF and not getting screened you at all. If you need to something, why not change your diet and living habits, which do play a part in getting PC as well as allowing it to grow out of hand. From my Man-to-Man group, I have run into men, who had Metastasized PC, with little hope, just change their diets and then see their PSAs begin to drop, with their PC in remission and their living much longer than expected. Maybe finding you have it will get you to change you life and start a Heart Healthy diet, which more likely may save you from dying of a Heart Attack or stroke than from the PC!
Therefore today with my not doing what I have explained above, except now having a better diet and doing more exercise, I am still dealing with ED, Incontinence with Urgency Problems, damaged Intestines with Irritable Bowel Syndrome, constant pain in my Abdomen, Penis & Left Wrist and Pelvic Floor area with the involuntary Pelvic Floor Muscle Contractions continuing, with Sleep issue, Peyronie's Disease & other penal damage partly leading to a split stream and messing myself and the floor around the toilet on many occasion and much Depression. Now pretty much deciding against trying to remove the mesh in my incontinence sling and hernia repair both caused by my RP and causing significant issues, but with specialist at both UCSF and Stanford indicating now, with it in place for years now, finding it all and then removing it will be impossible. Where one attempt has been made to try and fix both without success. Where also trying to having penal surgery to correct the Peyronie's Disease and ED is out of the question too, with the threat of further damage to great to take the risk, with more complications from other fixes already found and not needing any more problems or pain but lack of good treatment under the broken Workers Compensation System not available too. But where, I am still looking, without success, so far to find a Specialist to do Botox into my Pelvic Floor area to try and stop the contractions and pain there. Something not to promising, if I can not find just a Urologist or general Practice Primary Treating Physician (PTP) to see me under my Workers Comp Injuries.
Rich's e-mail address is: rich.eliot50 AT yahoo.com (replace "AT" with "@")