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What is the thought process for this?
I'm one year post-Orgovyx and 18 months post SBRT radiation. My testosterone is 220 and has been dropping instead of climbing with my doctor thinking I may be having testicular failure. My PSA is .04 which they told me is excellent for still having a prostate.
As a result of low T, my DEXA scan shows osteoporosis and osteopenia, and I'm developing metabolic syndrome (high cholesterol, pre-diabetes, etc.), and still having tiredness and inability to put on any muscle despite working out like a maniac.
My doctor wants to put me on a bone building medication, a statin, and possibly a diabetes drug. I asked "why not just raise my T to normal so that these side effects go away" and the response was that it's too dangerous to do this.
This makes no sense to me--it seems that taking three medications for side effects is a lot more dangerous than supplementing with TRT and stopping if my PSA started to rise. This especially seems true given that I have a lot of "runway" before I reach a PSA of 2.04 which would be considered a BRC. I asked about this and was, again, told the same thing about T being too dangerous.
Am I missing something really obvious here? I really don't like the idea of having to take three more medications and am especially scared of bone building drugs since I've read that the side effects of those can be brutal pain and inability to move for weeks or months.
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Scott, you are totally justified in being against an array of meds which can possibly be avoided by simply increasing your T.
I realize your RO wants to be conservative but as you point out, if your PSA starts to rise you can STOP the T. I don’t believe T is going to give you a new strain of PCa or wake up your old one. If that were the case, EVERY patient whose T recovers to pretreatment levels is fair game for cancer all over again; we KNOW that doesn’t happen!
My wife has been taking Fortibone collagen peptides (Amazon) for osteoporosis. It is clinically proven to add functional bone - not simply increase radiographic density. ZERO side effects (except slight low grade nausea if not mixed in food). My wife has been working out both aerobically and with weights for decades and STILL has the bone loss issue, so there are a lot of unknowns.
I know you were treated at Sloan in Westchester (?) and some of their older clinicians are VERY rigid in their views. I had a very young RO at the Commack facility and he was night and day with the first oldtimer assigned to my case….thank God he retired!! Best,
Phil
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1 Reactionhmmm
My experience, my perspective....
Attached is my clinical history.
After I completed triplet therapy in May 18 with my last 90 day Lupron shot, by October my T had recovered to 300+, by Feb 19 400+ and when we measured before starting doublet therapy in April 2023, 600+. And ye, my PFS was nearly five years. So, if T is the fuel and a danger when breaking from treatment, why did I go nearly five years before activity?
I am at 16 months post doublet therapy now. PSA has remained stable at .03, T is 400+, we'll measure in December. Again, why if T is the fuel...
When I asked my medical team, shrugged their shoulders, gave me the deer in the headlight look and said, you're not complaining, right! There is science and art when it comes to medicine.
Don't mind me, I may be a statistical outlier.
Kevin
As to ADT and done density. I didn't take any type of strengthening agents, but I do a lot of resistance training, Bone density scans are normal.
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2 ReactionsI agree about the science and art distinction. It seems most people prefer one over the other. My perspective is that a marriage of the two might be helpful, with neither dominating. Each has valuable insights to share with the other and their progeny might look like a cure…
They say this discussion is open and “ there is no topic you can’t discuss”. I had a RP 3 months ago, have innocence and impotence.
My question is “ what about your wife?” What can you do to overcome your inability to have sexual intercourse? I’m serious! This issues really concerns me!
@kujhawk1978
Your story and the issues are really all about "the thought process" that almost every medical procedure involves but seems a little more forward with the current PC therapies.
Radiation is an attempt to kill the cancer but it's not always 100% successful, which is why it is used in combination with ADT. OK maybe it's seldom successful and that's why it's used with ADT. But hey, it *might* sometimes really be successful! Maybe the ADT helps it be successful. And if and when it is successful then T isn't the fuel anymore because there's no more malignancy to fuel! But it's hard to know if it's successful.
And so the practice recommendations are to err on the side of caution. Even if the treatment is 100% successful today, if you were susceptible before it could recur de novo tomorrow. This is where the "art" comes in, trying to outguess the future.
Doctors are supposed to know this all but it's complex and statistical and in practicing their practice (!) doctors seldom have time to work it all through for themselves and aren't in the business of educating all patients on the mathematics of statistics so they simplify and shrug and appeal to "art".
How much of an outlier are you to be on the good side of this story? That's kind of the question I came to this group to try to understand. I still haven't run across anything like a clear answer but it seems doctors aren't handing out blue ribbons even in the best of cases, LOL.
My friend has been on ADT for a year, with a scheduled six more months to go, his PSA has been some miniscule number since right after the radiation, seemed modest and limited at the start - but I haven't heard him mention any bone density drugs, I will ask about it. He has stayed mildly active if rather less than before the ADT but he seems to suffer pretty much every possible side-effect, so I'm curious how much he's discussed it with his doctors.
Thanks.
@billybwbf2
There is video by a physician admonishing men that women can be made love to often to greater effect without penetration.
From another perspective, likely, sex is not the most important aspect of your relationship with your wife. The potency of sex is in the closeness the careful attention and expressions of caring.
Still there are ways of managing possible recovery that may be available to you with improvement often seen over 1 to , aided by penile rehabilitation; medications Viagra, injections, vacuum devices which can keep penile tissues healthy,
https://www.ucsfhealth.org/education/patient-guide-to-penile-injections
There are past post on the subject, but I think you'll hear more.
The silence is because your question is buried under a different question.
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1 Reaction@gently thanks for your reply. I will watch it! I’m not adverse to “non penetration” sex and have attempted it. I just worry if it’s enough for my wife.