Posted 6/12/2022 12:49 AM (GMT 0)
Thanks, everyone, for all of the good wishes. With the support and compassion I received here when I first joined, I feel compelled to share what I can, in the hope that it may give others hope that there are cases that may be complicated, but may also have stories of good results.
mattam - My T level has remained within a fairly narrow range over the past several years. With TRT, my uro and I try to keep my level around the second quartile of the lab's range. The lab we use states their range as normal being 300-1100. Thus the midpoint of the range is 700. My most recent T reading was 639, and over the past few years it has remained between about 500 and 700. That is with the use of one tube of gel daily, in the morning. The gel is a generic 1% gel, with 50 mg of T per 5 gr tube.
I did not get any push-back from my docs about the T, BUT. . . When I chose SBRT, I met with the two local providers equipped for SBRT. The first told me that "We will stop the T." When I asked him why, I got the classic "hand-wave" with his comment of "This is what we do." When I asked him how I was to deal with hypogonadism, he said "Stop the T. Your system will re-start. You will be surprised." (Yeah, sure. System was totally inoperative before, now it will magically restart?) Needless to say, I did not call him back.
When I met with the second CyberKnife RO, I asked her how we would deal with my hypogonadism. She said that she did not have the answers, but asked that I give her the time to reach out to a former colleague of hers. It turns out that she had taught at MSK New York, and she was reaching out to the head of the radiation oncology department at the school. He also said that "this is not in my wheelhouse, but I suggest that you have the patient be seen by Dr. Abraham Morgentaler (affiliated with Harvard Med) in Boston." Dr. Morgentaler had, by that time, spent his past 20 years studying and performing research on the impact of T on PCa. I flew to Boston and was seen by Dr. Morgentaler. As his "patient" he was able to write to my RO and my uro, offering his advice that in his opinion it would be safe to continue my TRT before, during and after radiation treatment. My RO and uro were willing to work within Dr. Morgantaler's advice, and the rest is history.
The fact is that my RO and I were pleased when my PSA stabilized at 1.0 for 18 months, given the fact that my T level is a bit higher than the typical guy in his mid-70's. Now that PSA has dropped to 0.47, we are thrilled. I cannot say that TRT is right for all PCa patients. Far from it. I can say, though, that in some fraction of cases, probably those of low-gleason scores and low tumor load, it may be appropriate. I encourage those who seek this therapy (TRT) to look into Dr. Morgentaler's work and publications. Share this info with your uro and other care team members. See if they would be willing to work with Dr. Morgentaler to meet your needs, and if so, make the trip to Boston. There may be other doctors in the "group" who will consider TRT for PCa patients, but I do not know who they are.
Glen - You have my sympathy. I, too, had some discomfort in urination and bowel movements for the first couple of months after SBRT. Wasn't fun, but didn't get in the way of daily life at all. What did get in the way was the couple of bouts of rectal bleeding, resulting from radiation proctitis. It is a good thing we don't have any carpeting on bedroom floors. Blood is easier to wipe up from wood floors than carpeting. 'Nuff said about that. . . A couple of treatments with the argon laser fixed that problem. It pays to have a good gastroenterologist, too.
BTW, JNF, the grandsons are doing great! They are now 5 and 7 years old. This year's adventure is that their family is moving from small-town western MA to NJ, as their dad has a new job. We are going out there to help them settle in the next few months. Exciting times!