I am 46 and in excellent health. My father died of prostate cancer when he was 75 (cancer was detected when he was 65, pre-PSA days, and had already spread) and my older brother had prostate cancer and his prostate removed 4 years ago when he was 49. I think my brother had a Gleason 7 and PSA 9, and his PSA is still near 0 at his 4 year mark.
I started getting screenings when I was 42 and my PSA was pretty steady at 2.5 (probably high for my age to begin with depending who you talk to) until it jumped at my last physical in October to 4.7. I went to a Urologist for a biopsy a few weeks later at the recommendation of my GP, and of the 12 samples taken (6 ea on the right and left side) only one of the 12 was positive: Right side, less than 5% of the biopsy involved, Gleason 3+3=6, T1c, Periprostatic Fat Invasion - not identified, Lymphatic Invasion - Absent, Perineural Invasion - Present, Seminal Vesicle Invasion - None Identified.
In addition to the Urologist that I first saw that did the biopsy, my wife and I have been to three other Urologist for 2nd opinions, and they have all basically told me the same thing: Too young for radiation treatment, too young for Active Surveillance, although it seems mainly because of the psychological reasons, HIFU is still too unproven and my only option is surgery.
I did see one radiologist as part of a multi-disciplinary team at the hospital where I received the biopsy and he also recommended surgery. After taking a mental break (or trying to) over the holidays, I also went to the local cancer institute in January to see if they had anything different to add. Unfortunately not, and they were ready to set me up for a surgery date. There certainly isn't a shortage of doctor's ready to take out your prostate.
In addition to all the reading I've been doing over the last few months (books and nights and nights on the internet), I have been reading all the experiences on this site to make sure surgery (Da Vinci) is what I really want to do. I feel my Urologist is a very experienced and capable doctor and am very comfortable with him and feel I will be in good hands. Before the biopsy he spent over an hour a few days before explaining the procedure, my chances of the biopsy coming back positive and my options if it did. After the biopsy I met with him again and also the multi-disciplinary team at the hospital. Although he strongly recommended surgery, he encouraged me to get 2nd and 3rd opinions and has never tried to rush me into a decision.
It's very hard to make a decision on what to do, especially with such a small amount of cancer detected.
I will likely choose surgery, and had an appointment with my doctor to set things up. I wasn't able to schedule for about three weeks, and in that time found a great presentation on the internet about re-staging localized prostate cancer at 6 months. When I went to see him on February 25th 2010, I told him that's what I wanted to do and he was supportive of my decision.
I will be going in for another blood test and biopsy on May 3rd and based on the results will go from there. I don't think Active Surveillance would be a long term solution for me and know I will likely need to get treatment at some point, especially with my age and family history, but if I could delay things even a few years or more, maybe the treatments will have improved, if even a little, or be more focal, or maybe there will be more consensus on Active Surveillance.
I am also intrigued by Proton Beam Therapy, but am mostly concerned about the long term affects since I will hopefully live another 35 or more years. Also, there are none near me and I don't know if I could be away from work or my family for that long.
Unfortunately there are no good treatment options, and as has been said by many others on this site, we all have to come to our own decisions and move on from there. I would like to thank Gregg and Terry for this amazing website, and all the men who have so openly shared their stories. I feel I have learned more about what to expect from any treatment choice than I ever could from talking to a doctor or reading about them in a book. It is also helpful to know that we all have the same life altering experiences, share the same feelings, and all want to hold on to as much or our 'maleness' as possible.
How I hate the change to my once comfortable life and long for my pre-cancer days. When I look at pictures of myself that were taken only weeks or months before the news, it's as if I'm looking at someone who was living a different life. I wonder sometimes if I will ever again feel the sense of peace and contentment I had in those pictures. Hopefully one day I will.
Godspeed to all and keep up the good fight.
Went in May 4th for another biopsy and the results were the same, 12 samples taken (6 ea on the right and left side) only one of the 12 was positive. Also had another PSA test and it was 4.6. Not a big change from 4.7 and probably within the margin of error of the test, but better than it being higher.
I met with my Urologist again after the biopsy and let him know I still wasn't ready to do anything yet so will repeat biopsy again in another 6 months. Had it been negative he might have waited a year for the next one, but with my age, he wants to keep a close watch on things. For now he is supportive of my decision. He doesn't say it, but I feel he thinks it is just a matter of time till I need an operation.
I asked him how many biopsies the prostate can take and if they make the operation more difficult, and he said the prostate can take many biopsies and that it's not as easy as operating on a non-scarred prostate but doesn't make it more difficult. In the meantime, I read 'Anticancer: A New Way of Life', by David Servan-Schreiber, MD, and a few other related book, and over the last several months have changed my diet and am eating less fats and meats, more fruits and vegetables, getting more Omega-3s, taking fish oil and vitamin supplements, have almost eliminated processed foods, sugars, and the like and I have started exercising more again. I have also stopped drinking my beloved beer and coffee and replaced it with red wine and green tea.
One side benefit is that I've lost about 15 pounds and look and feel great. I know I won't cure the disease with diet, but hope I can slow the progression substantially. For now, my plan is to change my diet and lifestyle, but to also closely monitor things and be ready to act if/when necessary.
I'm still leaning towards surgery, but am continuing to look at other options. I asked my Urologist about focal therapy, and he actually attends a yearly conference on it, but said that it is still not proven to be as effective as surgery and makes it too difficult to perform an operation if unsuccessful (which seems to be how he measures all the other options). If anyone else has talked to any doctors about focal therapy, or are considering it I would be interested in hearing from you. [If you want to know more about this subject go to the site search engine and enter focal therapy - there are several links] It also seems that radiation therapy continues to improve with more precise targeting and methods to track the movement of the prostate, but unfortunately there doesn't seem to be any good data or consensus on which methods are best, even within the radiology community, or data on how they compare to surgery, and I doubt there will be for quite some time (if ever). Hopefully the health care legislation passed this year won't limit my choices in the future.
One last note that may be of interest. I was having stomach issues, probably due to the stress, and went to a Gastroenterologist. Since I was there I asked him if he had dealt with any patients that had gone through radiation treatment for prostate cancer and treated any of the side affects like rectal bleeding and rectal cancer. He said the rectal bleeding can be taken care of with a few sessions of laser treatments, and as far as rectal cancer, felt that as long as they were having a regular colonoscopy it wouldn't be an issue. I also asked him if prostate biopsies had any affect on the rectal cavity and he said it was amazingly resilient and could take the biopsies without any problems.
Take care all and I will keep you posted.
Went in November 23rd for my third biopsy, just a little over a year since my initial diagnosis. Several days prior to the biopsy I went in for another blood test, and finally some good news, my PSA was down to 3.15. My Urologist said that it was a significant drop, but still too high for someone my age. He goes more by the age based determination, where it should be 0-2.5 for under 50. Also, at the biopsy he did the usual pre-biopsy DRE and said my prostate was smaller. I asked him, as I lay on the table awaiting the biopsy needle, if it meant anything, and he said that was good. A few days after the biopsy I got the results back, and still no change, 1 of 12 cores positive and a Gleason 6 (3+3).
He said that he is willing to do the surgery at any time, but if I want to continue my current surveillance to come in again in 6 months for another PSA test but no biopsy - Hallelujah! I assume he will base his decision for a biopsy on the PSA results, so hopefully it will be at least a year before I have to go through that again.
I'm dedicating myself to my new anti-cancer lifestyle more than ever now, and hope my PSA is even lower next time. I know that my journey is far from over and I will be dealing with this in one way or other for the rest of my life, but for now things are good and for the first time in many months I feel like my life is returning to some type of normalcy. Not like it did before the diagnosis, I don't think it will ever feel like that again, but as normal as it can be living with cancer. It is always there in the back of my mind, but there are some days now that I hardly think about it, and am ready to stay with active surveillance as long as I can.
Godspeed to all and I will keep you posted.
Hard to believe it's been over a year since my last posting. Thanks again to Terry for all he does in providing this site.
After my joyous 3.15 PSA reading in November 2010, I went in for another blood test May 2011. It was back up to 4.26 (Free PSA 0.81/19%), not as encouraging news as the last test. I talked to my Urologist over the phone and he said I could get a another biopsy if I wanted, but he was okay with waiting, and wanted me to come back in 3 months for another PSA test. I went back in August 2011 and this time it was up to 5.6 - crap!! Talked to my Urologist again and based on the rise he said I needed to schedule another biopsy. His first available appointment was six weeks out, and I took another blood test about a week before the biopsy (my idea, not his), which was late September 2011. This time it came back at 5.14 (Free PSA 0.81/15.8%). I had the biopsy early October 2011, and still no change, 1 of 12 cores positive and a Gleason 6 (3+3). They also identified ASAP (atypical small acinar proliferation) in another core. Scheduled an appointment to discuss the results with him to determine where to go from here.
Met with my Urologist in early November and my wife and I had a good discussion with him. First of all he asked me if I still wanted to continue my Active Surveillance, and I told him I was ready to ride it out as long as possible. He asked me if I was doing okay dealing with it and told him it was usually fine except when it was time for my PSA test and/or biopsy (which I've found to be times of great stress as all the thoughts and feelings I've tucked away come back). [I wrote a short peace on this subject twelve years ago when I too was three years down the AS track. I called it Without Hope.] I asked him about the latest in focal therapy and he said cryo and HIFU are being used a lot more now. He said a RP can still be performed after focal HIFU, but there is a higher rate of incontinence after the operation, something about having less of the sphincter to work with because of the damage from the therapy. I also asked him about the all the new MRI and 3D imaging that is being used as part of Active Surveillance at some places, and they actually had an opportunity to have it donated by a grateful patient, but after studying the latest available data determined there was minimal benefit for all the additional costs and biopsies. But he did say they are constantly evaluating this and other new technologies. In addition I asked him about my PSA going all over the place, and he told me as he did once before that the biopsy is the main thing that is used to determine how to proceed. They look for an increase in the grade and an increased number of cores. As we ended our discussions I said to him that even though AS is mainly for older patients I felt it was what I wanted to continue to do, and to my surprise he said that's not the case so much anymore, and he has quite a few patients in their 40's and 50's doing it now. Both my wife and I think he may be the best doctor either of us have ever dealt with, and I feel blessed to have changed my initial biopsy appointment to him from the doctor I had originally planned on seeing. He is very personable, confident in his abilities as a surgeon but not arrogant, and is always going to conferences to keep up with the latest in urology and prostate cancer.
I'll go in April or May for another blood test, and based on the results either get another biopsy or wait another six months for a blood test. Here's hoping for a low or not rising PSA. So, here I am two years later, cursing the day of my initial diagnosis, hoping improved treatments (either existing or new) come along, hoping 15 years from now I'm not regretting AS, and dreading the day I have to make a treatment decision. [I'm not regretting my decision fifteen years down the track - but that doesn't mean that everyone will be as fortunate as I have been. Based on what Dave knows so far I'd say he has a similar chance to me.]
Dave H., Utah
Three years since my journey started with my initial PSA jump and here's the latest. Got a blood test in April 2012 and my PSA came back 4.23. Based on the results I waited another 6 months for another blood test. Had another blood test October 11, 2012 and it came back 2.76 - Wahoo and praise God!! This is close to what it was the last low reading of 2.6 four years ago prior to my jump to 4.7. Met with my Urologist and we will wait another 6 months and get another blood test, and no biopsy for now. He said a dropping PSA is a sign that the cancer isn't active or growing. He also asked me at the start of the appointment if he had me on Fintraside (I think) because it was so low, and when I told him I wasn't taking anything his reaction was "Wow", which was a good thing to hear. No questions from him about any lifestyle changes though.
I'm going to keep doing what I've been doing with my diet an supplements and pray the downward trend continues.
One note, after several months of problems with my right ear that started in late January, I was diagnosed with an Acoustic Neuroma, which is a benign tumor that starts in the inner ear nerve and then begins to grow in the area between the skull and brain. Mine was in the large category, almost 3 cm, and there was no chance to save the hearing in my ear (I can still hear with my left ear thankfully). I was in the operating room for 6 hours, and spent a night in the ICU and two more nights in the hospital, and was off work for 6 weeks. They basically go in from behind the ear, drill a hole in the skull and remove the tumor. It takes an ear specialist and neurosurgeon to perform the operation since they remove the hearing and balance nerve, and the neurosurgeon has to peel the tumor away from the facial nerve and try to preserve it. Luckily for me they were able to save the facial nerve and I have no paralysis. It really kicked my butt, the operation was July 9th, and I'm just now starting to feel like I'm getting my energy levels back. The operation also gave me the opportunity to get an idea of what I would be in for if I ever get an RP, and I got to experience the joys of a catheter for a night. It also gave me an idea of how surgery affects nerves and nerve recovery, as I still have strange sensations and tastes in my mouth, and the neurologist said I won't know for up to 18 months what I will finally be living with for the rest of my life. The doctors told me the tumor has probably been there for years and they still don't know what causes them. I don't know if getting the large mass out of my head removed a burden for my immune system and contributed to my low PSA, but I like to think it may have helped.
Till next time
I had my bi-annual blood test and appointment with my Urologist. My PSA test came back at 2.94, so basically no change from last time. I'm very happy to have two low results in a row, this is the first time my PSA hasn't risen after a PSA drop and I'm praying the trend continues. My Urologist was happy with the results also and I will see him again in six months. He said he could do a biopsy if I wanted and was worried about the cancer, but said he was comfortable with waiting - I graciously declined. He also said he has about 10 patients around my age who are on Active Surveillance and we are all doing well. Quite a change from when I was first diagnosed and everyone I talked to wanted to operate on me. In addition, he mentioned how I had lost weight and was looking good, and finally asked me if I was doing anything. I told him about my anti-cancer lifestyle and he brought up how men that come from countries with good diets and low rates of PC who adopt our western diet will then have the same rates of PC as a result, so it seems like the medical community is starting to take notice of the affects of our poor diet on cancer and other diseases.
During the appointment I asked him about some of the bad press the DaVinci has been getting lately, and he said the incidents are the result of lack of experience and training. He said the main benefit he sees from using it is better continence and the patient being able to leave the hospital sooner. He said the impotence rates are about the same for both the DaVinci and open surgery. I also asked him about the recent submittal to the FDA from a HIFU manufacturer. He said he and another doctor went to the Bahamas (tough gig) to witness the procedures that were being performed and were impressed, and if it is approved for use would have the experts come to their hospital to train them for the first 100 or so procedures because there's a lot of potential for damage. So I guess there's hope, but he did say one requirement is that you need to have a smaller prostate to have the procedure so it would never replace the RP (that's the first I've heard of only being able to perform HIFU on smaller prostates).
Till next time…
Went in again for my bi-annual blood test and appointment with my Urologist in January (a little longer than 6 months this time because the doctor's schedule was more full than normal). My PSA test came back at 2.89. Basically no change from last time, and no biopsy for now unless there is a rise in the PSA. He asked me again if he had me on Finasteride and the nurse was even surprised when I told him no. He also mentioned that more and more patients are choosing Active Surveillance, four years and counting for me.
I went in for my bi-annual blood test in July and the results came back 2.98, basically no change in the past two years. I had my usual follow up appointment with my Urologist and after some discussion he recommended a biopsy. More precautionary than anything to make sure things were still looking okay since it's been almost three years since my last biopsy. He mentioned there are some types of PC that can spread even with a low PSA, but if things looked okay we could reassess how often I needed to come in for testing. I had the biopsy, my 5th, about six weeks later in late-August and the results came back – NEGATIVE!! Wahoo and all praise and glory to God, he has answered my prayers. I was just hoping for no change, it took a while for it to sink in when I got the results. My Urologist seemed genuinely happy for me and said to keep doing whatever it is I'm doing and he would see my in a year. I mentioned to him my anti-cancer lifestyle and diet, and he said there have been some recent studies indicating PC can be managed with diet.
And of course there's always another test, right? There's now a new test called Confirm MDx for negative biopsies that looks for a field effect or halo associated with the presence of PC at the DNA level. My biopsy samples were sent in for the test and about two weeks later came back and showed a few suspicious areas. My Urologist said this could be used if another biopsy is warranted to help determine what areas to look at more closely. If this had also come back negative he said I could have waited two years to see him again. I was hopeful it would be negative, but not surprised it wasn't given my past biopsies. And I'm sure if you took a random sampling of prostate tissue from men in their 50's you'd find plenty of positive results from this test, so I'm not going to let it dampen my happiness.
Quite a change from my initial diagnosis when everyone wanted to operate on me. Here I am almost five years later still with my prostate, thinking back on how close I came to going through with the operation. I know this will be a lifelong battle, but I fully expect to have my prostate another five years from now.
Good luck to all of you with whatever decision you make, and make sure to get plenty of second opinions and don't be rushed into a treatment. And never underestimate the power of prayer, diet, positive thinking and exercise.
Lastly, I was saddened to hear of the recent death of Terry Hebert, the founder of this site. I hope he realized the legacy he left and how many men he helped over the years. I'll never forget the early days of my diagnosis when I spent hours and hours reading all the different stories on this site. And, after I posted my story I remember how he was one of the few people that was supportive of my decision (in our few e-mail exchanges). May you rest in peace.
Had my PSA test 10/2/15 in preparation for my upcoming appointment with my Urologist in about three weeks and it came back at 3.06, so basically no change since my last PSA test over a year ago and holding steady for the past three years. I'm pretty happy, but it was a bit stressful gearing myself up again after being able to go so long after the negative biopsy. I'll post an update after my appointment, my hope is I won't need to see him for another year again.
Had my follow-up appointment with my Urologist late October. A pretty quick appointment, he looked over my PSA test and asked how everything was going and said as long as I was doing okay to see him again in a year.
I asked him about the recent FDA approval of HIFU as a treatment option, and he seemed pretty optimistic that it would be a good option for the right patients as long as the procedure was performed by a competent doctor. He had gone to the Bahamas a few years ago to see the procedure being performed and they will now be getting trained up to start doing the procedure. He said he won't be one of the doctors since he's too busy, but I had met with the doctor who will be doing it for one of my second opinions and am happy with their choice. He said they will be working with some of the top specialists in the field and won't start doing them until the specialists think they are ready. He also said to expect an advertising blitz since the HIFU manufacturers have spent so much money getting the approval. I fall into the category of having this as a treatment option (localized and a smaller prostate), and I'm very hopeful, even optimistic for maybe the first time that if I ever do need treatment this will be available and effective with minimal side-effects.
As I left I mentioned to him that it was almost exactly six years since my first appointment with him, and he commented that I was a model example of effectively using Active Surveillance.
It's hard to believe it's been six years and all the changes in my life since my diagnosis. I try to always remember the Lord's Prayer 'give us this day our daily bread', take it day-by-day, and live a life of gratitude and thankfulness.
God bless and good luck on your journey.
Went in mid-November for my PSA test and follow-up with my Urologist. PSA was back up to 4.59 - crap! Not that high but a jump from hanging around 3 for the last four wonderful, almost normal years. Of course my Urologist wants to do another biopsy. Now they are doing a MRI fusion, where I will go in for an MRI first to help target any areas of concern more when doing the biopsy. My Urologist is one of the few in the area doing them. Currently scheduled for February. They journey continues...
Had the MRI performed in February 2017, the results didn't show any areas of suspicion but my urologist still wanted to do the biopsy and said the MRI would help. Had the biopsy performed late February. The good news was it was another negative biopsy! The bad news was all of the cores showed acute/chronic prostatitis. My urologist prescribed finasteride, I took it for 10 ½ weeks then stopped after suffering through the worst side effects I have ever experienced from a prescription. In addition to the almost instantaneous ED issues, after a while I started having mental fog and depression, and then very bad, almost debilitating insomnia. A while after stopping the finasteride the mental and ED issues went away, but the insomnia lasted for many weeks. I eventually went to a sleep clinic and have gotten much better, but there are still times when I wake up early, but am able to usually get back to sleep. My recommendation to anyone who has this prescribed is to read up and proceed with caution, from my research online there are some who have permanent side effects. I would not recommend it to anyone.
Afterwards I tried various supplements, acupuncture and herbs, with limited success. I had a cystoscopy in early August and also a urodynamics test which showed I had obstructed urethra due to my prostate and also urinary retention issues. My urologist of course recommended removing my prostate, said a TURP caused too many side effects if I ever did need the surgery for prostate cancer. From what I've read on a TURP I wouldn't want one anyway. Went to another urologist for a second opinion in early November, he was against doing an operation and performed another cystoscopy and did a PSA test. The PSA test came back at 7.4, crap. He prescribed a month of antibiotics and retest, did another PSA test in late December and it was down to 5.7. His diagnosis is BPH with prostatitis, possibly due to all the damn biopsies I've had, and based on my past two biopsies and how long I've been on active surveillance very low risk prostate cancer. I have a follow up appointment in late January to determine the path forward. He does the urolift procedure for BPH so that may be an option, we'll see…
Dave's e-mail address is: dbhumie AT comcast.net (replace "AT" with "@")