A birthday present. My specimen reading was dated March 2, 2010. My 61st birthday March 2, 2010. For the past three years my PSA had been rising. My family doc had been following and doing the digital rectal exam and could not feel anything abnormal. When the PSA crossed 4 he sent me to a urologist who recommended a biopsy based upon the velocity (rate of change) of the PSA in 3 years. I have no family history of cancer of any kind.
You guys who have not had a biopsy remember this. DEMAND a biopsy from a clinic that does it with anesthesia and also a two person operation and a device that does not require the baton to be removed from the rectum and reinserted for each sample. Then insist upon a saturation biopsy, about 20 samples. If you have no anesthesia you will be in a cold sweat and counting each shot of the nail gun, like me. Doc said it would be over before I knew it. He lied.
Post biopsy I had very little blood in bowels and urine but a LOT in ejaculate for about 3 weeks. Some people have different variations. But no post biopsy pain.
The next week I got what the urologist called the best worst news he could give. I had cancer. But it was early stage one sample of 12 had cancer 75% of the sample was cancer and the worst news was that a nerve was involved. He gave me a book and literature to read and asked about previous operations. I did have a previous emergency operation that was a false alarm but the scar tissue was a concern to him for the option of surgery.
A week later, after the OMG I have cancer thrill had faded and I had done my research I returned for a consultation. I had decided that I did not want any type of surgery and the risk of death on the table or from the surgery and all of the complications (blood loss, nerve damage, incontinence, impotence, loss of function in legs, MORE). I had decided on proton therapy and had already worked with the Florida Proton Center in Jacksonville. I told the doc that was my choice and he said "You want that? great! I'll refer you."
I was all smiles and happy. Was working with the UF Proton Center making plans. Today March 23, 2010 I heard from the Proton Center that my insurance, BCBS of Alabama has denied the treatment saying it was not superior to other available treatments. Not only that but they have changed their policy only recently to exclude the proton therapy, even though Medicare pays for it. So if I were four years older I would be on my way to Florida for a consultation visit.
Later: More and more insurers are denying Proton Therapy for prostate cancer based upon the claims that it is not superior to other alternatives and is more costly. BCBS of AL changed their policy in Feb 2009 to specifically exclude Protons for Prostate cancer.
I am seeing several doctors (Urologist, Radiation, Chemo, and my ENT and primary physician) to form a strategy. Urologist does not recommend surgery (surprise!), I haven't seen radiation or chemo docs yet. ENT will write a memo for record that Proton is superior for me due being the least stress option. I am stuck in the cogs of the system; I have insurance but am uninsured.
I gave up on the University of Florida Proton center. After the news of insurance denial they just left me flapping in the wind. I called back to MD Anderson and, after getting through the gatekeepers I connected with a sweet RN. I told her the whole drill including the insurance denial. She was undeterred. I have since sent her all the information that I sent to UF and more. They are evaluating.
Today I consulted with a local radiation oncologist. He does both external beam radiation, the Intensity Beam Radiation Therapy (IBRT) and the Brachytherapy (interstitial radioactive seeds)- interstitial means inside the body tissue, in this case inside the prostate. I expected him to favor these approaches over Protons. To my delight he was a radiation oncologist that should have been an engineer or physicist. He went into painstaking detail about all the treatments and how he practices it. Being the engineer I had LOTS of technical questions and he was in there with me. I said explain IMRT, how do you steer the waves as only God can make an apparatus to steer them to a pencil point. They use multiple radiation sources and magnets, I don't get the magnets, but think of phased array RADAR, its the same principle of designed wave interference. Anyway, he was honest about side effect and such. Then we got onto Protons and he understood the Bragg's Effect quite well and was supportive of going that way, even though he does not do that.
YES!!! I think its going to be alright.
Visited MD Anderson Proton center for consultation. Decided this is what I want. MD Anderson sent letter of medical necessity to BCBS of AL. BCBC of AL denied saying proton therapy is investigational. MD Anderson helped me with first appeal which was quickly denied by BCBS of AL.
Am waiting formal letter of denial stating rationale. BCBS of Alabama is determined to destroy the proton therapy option for Alabama men.
September 05, 2010. MD Anderson sent letter of medical necessity to BCBS of AL who responded that Proton Therapy for prostate cancer is "investigational." I appealed with aid of MD Anderson and scientific articles BCBS replied "Proton Therapy is nor superior to other options in particular IMRT and conformal beam."
Looking at my insurance policy it is through Huntsville Hospital (Alabama). The policy is very short. I'll summarize.
"If we do the procedure at Huntsville Hospital we pay 100%. If it is done inside the PPO we pay 80%. If we or the PPO do not do the procedure we pay 0%."
A call to the hospital benefits manager yielded this:
"We will have to have a letter from a doctor in the PPO stating why this procedure is needed and why it cannot be done at Huntsville Hospital."
I have an appointment with my local radiation oncologist Sep. 17 and have drafted a letter so that all he has to do is change it and sign it. In the meantime I am continuing the BCBS AL appeal process and have brought in the Patient Advocate Foundation to aid. I also sent a complaint to the Alabama Insurance Commission. A many pronged attack.
This is consuming my mind and energy and will likely cost me my job. I put my home up for sale assuming that the only way I will get Proton Beam Therapy is to pay cash out of pocket. Bankruptcy and Disability await thanks to our ungodly awful medical insurance system.
January 2011, eleven months after diagnosis still no treatments. BCBS of AL has again tightened their biased statement denying proton beam therapy.
I attempted to get into a early stage prostate cancer PROVENGE clinical trial in San Francisco but it seems they want the participants to give up their prostates to science after the vaccine. Well, duhhhhhh, if you have been vaccinated against prostate cancer with a very promising treatment why in God's name would you then proceed with a radical prostectomy having been "cured"? After exhausting all appeals I tried again through the back door of the self payer employer. The appeal was the last week of December. I received a call asking only "have you already had this treatment and if so when?" I replied no, have not had it, but assuredly plan to. I have received no response since then.
PSA has been bouncing around between 4.1 and 4.8 and I will get results of latest this coming Friday from a local radiation oncologist that totally agrees that Proton is superior to anything he can do but is too wimpy to tell that to the hospital he works for. Is afraid of retribution. Big medicine does play favorites and publicly going against current investments not yet fully recovered is dangerous to one's employment. The locals spent a LOT of money on those fancy IMRT machines and DaVinci robots thinking those were the future and now finding they are the past before being paid for.
God bless all in 2011 may this be a year that turns the corner on providing men the same public support for prostate cancer as women get for breast cancer.
After giving up on my BCBS of AL insurance ever covering any aspect of Proton Beam therapy (the closest thing to no side effects) I went into Active Surveillance. I also changed my diet and lost 26 pounds. My PSA tracked my weight loss downwards and went all the way down to 3.1. I remarried and moved to Mexico where my wife kept me on a local diet of fruits and vegetables, chicken and fish with an occasional steak. I was being treated for neck/back pain with localized steroid injections in the USA but in Mexico they preferred the systemic steroids.
I was able to change insurances to the Pre-existing Condition Insurance Plan (PCIP) made possible by the Affordable Health Care Act and it appeared they would pay for the proton therapy. My PSA had begun spiking and went up to 6.4, the highest ever, so at two years after being diagnosed I went to MD Anderson to begin treatment.
The first step was a biopsy to determine the extent of the cancer for treatment planning. Surprise! No cancer found. So after two years of agony we know that prostate cancer, when detected early, should not be treated immediately. You should take your time, do research, see many doctors. Be your own physician and use MDs as consultants. You are in charge.
I encourage every man to modify the diet away from the American saturated fat, artificial sweetener, carbonated beverage, killing diet. It is known that heart health and prostate health are linked, what's good for the heart is good for the prostate. Diet and exercise are important as is quantity and quality of sleep and stress reduction.
My cancer may come back, I know. If it does it will be a different cancer and I will be worried. But we were born too early. I predict that in 10 years prostate cancer will be primarily treated by an injection or three of designer drugs.
Richard of Mexico y Alabama
July 2012 went to MDA for Proton treatment. Biopsy found no cancer. Dr said they would treat based upon the previous (2 year old) biopsy that came up with 1 positive out of 12 cores. My PSA has yo-yo'd but is now at over 7, the highest its ever been. I said no... I am now living in Mexico and having my PSA checked quarterly. I get the next test results 31 January 2013.
Have been doing the "Watchful Waiting" or "Active Surveillance" thing. PSA remained between 6.4 and 6.9 for about two years then took a sudden spike to 8.9 summer of '13. Going to have another test soon to see if that is an anomaly. I am trying to get the PCA3 genetic test but having troubles scheduling. I'm living in Monterrey, Nuevo Leon, Mexico and there is a specialist here who will do the prostate massage, take the urine and send it to the PCA3 proprietary lab. It's costly, not the doc but the proprietary lab, about 7000 pesos. That's at roughly 12.8 pesos to the US dollar. About $550 US. But first I want to talk to my USA doc in Texas to see if he can do it and if Medicare will pay. If this thing has exploded I'm back to MD Anderson for Proton Beam, unless it has spread.
On active surveillance 2010 to 2013. Then PSA spiked from 6 to 10 in 4 months.
Had endo-rectal MRI at MD Anderson followed by biopsy guided by the MRI images 6 positive cores, all 4+3. MD Anderson proton doc wanted Casodex+Lupron 3 months prior to proton treatment. My research showed no evidence for same, especially the Lupron. Given horrid side effects of Lupron I said no just do the protons with Casodex. MD Anderson said no, their way or the highway. I called other proton centers who said they would do the protons with Casodex monotherapy. They advise patients but in the end patients make decisions. I'm very disappointed in MD Anderson. I'm currently on Casodex +Avodart daily and awaiting next PSA test. I have skin flaking continuously from forehead and fatigue.
MD Anderson at the time had no research to show me that the improvement in results by the addition of androgen ablation with the radiation was not just the androgen ablation alone and radiation was just a wasting exercise. Since then data has been published showing it is the combination, not just AA or Radiation but both that is most effective for intermediate grade (My situation) prostate cancer. Additional research shows that Casodex alone is just as effective in results as Cadodex+Lupron.
Thus I am searching for another proton therapy center and the cost of residing there for 9 weeks is the primary driver. Thinking that Bloomington, Indiana may be the best in that department.
Did active surveillance, diet mods, and OTC meds 2010 to 2014. In fall 2014 PSA began exponential rise hitting 10.1 at one point. I planned to go back to MD Anderson for proton radiation but the doc demanded I do Lupron first. I said no Lupron, patient's call. He wouldn't budge I fired him.
Was setup to go to Indiana U (IU) Proton center when a brother was hospitalized with metastatic pancreatic cancer and I had to travel. Spent a month with him and other brother and laid Larry to rest. During this time my Alabama oncologist talked me into the bicalutamide. The avodart was my idea from researching high T low DHT kills PC. Well it worked, dropped PSA to 1.5 by May 2014. Also shrunk my penis and ended erections.
June through August 2014 I received 75Gy in 42 fractions at IU. Three months out of the box and PSA was 3.1, uh oh. At six months was 4.2. A definite failure. The cancer had already spread before the treatment.
On my way to Mayo clinic for endo-rectal MRI and C11 Choline PET scan. We already know it will show PC outside the prostate just not how much and where. I just visited a urologist cum marijuana meds doc in Colorado who would not come right out and say cannabis cures prostate cancer (he has a medical license to care for) but hint hint why do you think I came out of retirement and added Marijuana as medicine. There are no golden Randomized clinical trials or other simply because the US government forbids them. "Thus I can't tell you what you want to here." "But after you see Mayo consider coming back to get residency so that you can get cancer strength meds." I am looking at rooms for rent in Craigslist whilst planning the drive to Mayo tomorrow.
At Mayo Clinic April 2015 the Choline PET scan showed no mestastesis and some suspicious places withing the prostate. PSA had dropped from around 4.8 down to 2.8 at time of the PET scan. Urologist could not help himself, suggested a biopsy! I said no, no, and no. Drove back to Alabama. September 2015 PSA was 1.8. Drove to Mexico for the winter. December 2015 had PSA test in south Texas was a 1.8. So I know it should be less than 0.04 or so but I'm good with stable.
The treatments, whether bicalutamide, avodart, or proton beam therapy (no way to tell which) messed up the sex organs. Shortened penis. Psychologically destroyed sex drive. Methinks I should have opted for cannabis oils.
Richard's e-mail address is: firstname.lastname@example.org