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My treatment choice - "Low T" guy chooses surgery over Proton Therapy and explains why
Earlier, I posted a question on the Yana Discussion Forum asking if any “low testosterone” men that had Proton Beam Therapy were allowed to go back on testosterone after treatment. Surprisingly, I got no replies to my question... yet many people read it. I say “surprisingly” because there has got to be thousands of men in my situation… a man with low testosterone that was diagnosed with Prostate Cancer. Many men are now being tested for low testosterone in this modern era, and the addition of testosterone treatment for Low T brings on repeated PSA tests... which bring greater numbers of men to know they have PC. While taking testosterone (Androgel), my PSA was tested regularly. As my PSA went up, this brought on a biopsy that discovered the cancer. Now the dilemma: what treatment choice should I make to take care of my cancer... knowing I need testosterone after treatment? For me, it ultimately came down to surgery, or my "less painful" preference, proton beam therapy. I am 49 years old, T2c, 3 of 12 cores positive (one 40-50% of the core or 8mm of sample) with a Gleason score of 6 confirmed by three pathologists.
I discovered the answer to my question, so I figured I would post it for others to see, because no one replied to my question... yet many people viewed the question... and perhaps other men would be interested in my answer.
I met with Dr. Carl Rossi for about 80 minutes the other day. Dr. Rossi has treated more men with Proton therapy for PC than any doctor in the world. It was a rather enlightening discussion regarding Proton Beam Therapy… especially for my unique situation. I have been hypogonadal for at least 5 years. My latest testosterone level came back at 183 (at 49 years old)... normal range about 300-900... with it being a little higher in the range for younger men like me, and a little lower in the range for older men.
Dr. Rossi agreed that "theoretically" going back on Androgel after Proton therapy for PC should not be any more cause for concern than a man that naturally has adequate levels of testosterone. However, he stated that he would not be comfortable until I reached "nadir" (the low PSA point after treatment). He stated that nadir is reached, on average, at 40 months for Proton therapy. This number surprised me, as many men on this website and others have stated about 18-20 months to reach nadir. That means I would have to go without adequate levels of testosterone for about 3.3 years after two months of treatment. (Not good). In addition, he stated that I would have to be cautious in the use of Androgel and be tested regularly for a rise in PSA. I should definitely "ease" back into its use. His answer confirmed my suspicions regarding Proton Therapy. Sometimes... the Proton radiation (as well as Photon radiation too) does not kill ALL of the cancer cells. Unlike surgery, if the cancer is contained in the prostate (key word... if), the cancer is gone upon removal of the gland. Thus, adding testosterone after 6-12 months of undetectable PSA is relatively safe. (I say "relatively" because it is possible that some cancer got through the capsule microscopically.)
There are several small studies in the last few years that are starting to confirm the safety of going back on testosterone after successful treatment for prostate cancer. Men who have successfully treated PC in the past seem to be at a very low risk of it developing again with the addition of testosterone. I would go further and predict that men with no prostate (surgically removed... and no detectable PSA for a year, or preferably more) probably have a LOWER risk of developing PC than a typical man in the population. Remember, 1 in 6 men will get PC at some point in their life.
More importantly in our discussion were a few other admonitions from the doctor. In addition to Low T, I have had serious issues with both of my hips from years of playing sports. I will likely need hip replacements some day. He admitted that this could complicate these future surgeries as radiation must pass through my hip muscles to get to the target. He stated he would change the entry points of the Proton beams. However, he admitted that he could not come in from the front as the radiation would pass through sensitive structures like the bladder. (Hmmm??? It appears that Proton radiation, while better than photon radiation, still can cause damage on the way in as it passes through tissues.) He said he would come in from two oblique angles posteriorly.
The most serious admonition from the doctor was the fact that his documentation stated that rates of erectile dysfunction after Proton Therapy was one-fourth to one-third of all patients!!! That was not at all what I expected after reading literally hundreds of testimonials on this YANA site and the Proton Bob site. I questioned him on this topic thoroughly... asking him how that could be. He explained that the radiation hits the neurovascular bundles (that control erections) and hit blood vessels that supply blood to the nerves as well. When I asked him point blank, "Are you telling me that the odds for ED are about the same for surgery with an expert surgeon (key word... expert) as it is with Proton therapy?" His answer was... "Yes." (Keep in mind that I am young. While surgery will definitely effect sexual function in the short term... about 6 months to 12 months for a guy my age, sexual function will very likely come back to close to normal within a year. With Proton Therapy, ED will probably not be an issue for several years, but may come on later at the odds above that I mentioned.)
So for my particular unique situation:
1)young enough to be alive in 15-20 years and have a greater likelihood of radiation induced problems late in life (secondary cancer of bladder or rectum, bowel and urinary issues, ED)
2)hypogonadal and in need of testosterone after treatment
3)likely to have hip surgeries in the future…
… the only sensible choice is to get robotic surgery with a very experienced surgeon. I have chosen Dr. Chris Kane, UCSD Medical Center. Surgery is set for June 30th.
Re: My treatment choice - "Low T" guy chooses surgery over Proton Therapy and explains why
It looks as if you thoroughly researched your options and carefully evaluated the advantages and disadvantages of each.
How thoughtful of you to share your decision-making process.
Best wishes Don O.
Re: My treatment choice - "Low T" guy chooses surgery over Proton Therapy and explains why
With a Gleason of 6 and a low PSA I would try active surveilance. There are many new drugs for PC coming down the pipeline and you've got at least 10 - 15 years before you need treatment. At least ask about AS from one of the big PC centers.
Re: My treatment choice - "Low T" guy chooses surgery over Proton Therapy and explains why
Bioguy, with your young age and low grade #s I believe you have made the correct choice. Removal is the gold standard. If one is older, "AS" or "brachy" or "radiation" may look somewhat as attractive. You cannot afford to take a chance - especially with proton - when you are only in your 40s. Do lots of walking while recovering to get rid of gas, take laxatives religiously and stockpile some good books to read.
Re: My treatment choice - "Low T" guy chooses surgery over Proton Therapy and explains why
Frank,
Thank you for your response. I totally agree with you regarding your advice to investigate Active Surveillance as an option. I have been researching that option intensely since my post a few days ago stating that surgery would be my best option for my unique situation. Assuming... I need to treat it now!!! My biopsy was in November. So it has been 6 months since my diagnosis. My last PSA was 3.0 (my lowest ever is 2.8). I get another test tomorrow. If the PSA level remains low, I will continue to research the option of A.S.
The key for me right now is try to figure out if I have a slow growing cancer or an aggressive one. Sadly, I was the one that had to tell my urologist that I wanted three additional test from Bostwick labs. The Prostavision test, the DNA Ploidy test, and any Bio-Marker test they offer. These additional tests can help determine with a fair degree of accuracy if my cancer is slow-growing or aggressive. Combined with the upcoming PSA test, I should be able to make a more informed decision on waiting or not. I also plan on traveling up to the UCLA Medical Center to talk to Chief of Urology Dr. William Aronson, who was part of a huge study on A.S.
I am well aware of the studies that show that men on A.S. fair no worse than men who seek immediate treatment. The key difference is that men on A.S. do not have to suffer years of troublesome side effects from PC treatment while they are carefully monitoring their condition. I agree that we are in an age where new drugs or treatment will be here shortly. Huge amounts of money are pouring in for prostate cancer research as the large number of baby boomers are being routinely screened for PC by PSA testing.
Re: My treatment choice - "Low T" guy chooses surgery over Proton Therapy and explains why
Bioguy,
I like the research you have been doing. I found myself educating my urologist also. You might consider looking at the pivot study. It compared AS vs surgery with a 12 year follow-up. Conclusion: There was no difference in overall or prostate specific survival between men randomly assigned to radical prostatectomy and those assigned to watchful waiting.
