I'm a Gleason 4+3, group T2C. I completed five sessions of SBRT but the radiation oncologist says staying on Lupron for six months total will improve the odds of success. What I see online, though, is that ADT only improves the odds of success by 1-2 percentage points. If that's the case, it's not worth it to me for all the awful side effects I've had and I just want to drop it. I have three months to go but am doing month to month and am told that every month of ADT means one more month for it to wear off, i.e. six months of ADT takes a year to wear off and, worse, that after three months the odds of ED being permanent greatly increase.
Does anyone know of any studies showing higher percentages of success of SBRT with ADT vs. without? If it's a decent increase in survival percentage, say 10% or more, I'll stick it out. But if it really is only 1-2% then I feel it's not for me.
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Hello, can you please provide the source for saying "What I see online, though, is that ADT only improves the odds of success by 1-2 percentage points"?
Go figure it took a group of lady urologist to tell men the advantages and disadvantages of using hormone treatment. But you’re on the right track; if you need hormone treatment, then erectile dysfunction is almost an immediate side effect. We’re never told this but you need to know going in. But again if you need it ADT use it. I did and I’m glad I did. But I was never told what was gonna happen to me.
I checked your bio and I do not know if you had a radical prostatectomy and then radiation. I’m not able to give you any articles or studies that show the efficacy of short term versus long-term hormone therapy without having a RP first. But I would dig into that if I were you. Just understand once you do hormone therapy for even six months or especially a year then your erectile dysfunction is permanent. So you really have to use hormone therapy if you absolutely need it. Good luck.
Do not know where you get the statement that ADT makes you have erectile dysfunction permanent - someone forgot to tell my wee Willy boy that - he gets up and around just fine after 6 months Lupron and 34 sessions of radiation - after having a radical prostate surgery removal 4 years prior.The ADT for 6 months did have some side affects - mostly hot flashes - and no - I had no interest in sex during that time - but over all - just manned up and got it done - exercised right through it.
I know everyone is different - but very minor to me - compared to dying from Prostate Cancer - which my Uncle did - I saw what he went through when it mestastized to his bones - ADT - no big deal compared to that!
I had 5 sessions of SBRT as a primary treatment with six months of Lupron and three months of Casodex. I pushed to just have SBRT but the radonc insisted ADT was necessary but was cagey when I asked how much it would improve my odds. I want to know it's actually doing me some good because, compared to the radiation, ADT is awful and I want to make sure I'm poisoning myself for a reason.
My understanding is that the higher the risk, the greater the benefit of ADT. With 4+3 intermediate unfavorable risk PCa, I think RT alone has a 65% chance of cure, while RT + ADT is 85%. But I have no reference for that, just my recollection.
"Even after 3 or 4 months of ADT, damage to erectile function is likely to be permanent because of alterations to the smooth muscle in the cavernous bodies of the penis."
"Some men are given double-blockade therapy by adding an androgen blocker to ADT. Although survival benefits of double blockade are dubious, drugs such as finasteride or bicalutamide may directly damage the smooth muscle inside the cavernous bodies, increasing the risk of venous leak and irreversible erectile dysfunction."
I did twelve months only of ADT as added insurance after my third curative attempt, salvage extended pelvic lymph node dissection; which was preceded by salvage RT (no ADT) and RP.
That 12 months of ADT was a compromise actually with medical team that recommended extended ADT and chemo. Ya, I consult with many docs and read many a studies, see all the stats. For me, diagnosed at 57 with an otherwise healthy, fit and active lifestyle, 5, 10 and even 15 year suppression survivability seems short.
Did it help? I do not know. After my ePLND my PSA nadir was <0.010, the value I rely on as best indicator. None-the-less for the compromise I took the ADT for next 12 months. My PSA held at <0.010 but then at month 23 the < drop, and since, a slow very stable rise to current 0.03X range.
I do wonder what if I had not taken it? Here is what I do know. My capability of a firm erection ended. My breasts grew - very nice breasts if I may. My energy levels and my muscle mass plummeted. I was beginning to feel the onset of depression. It has taken several years to recover my energy levels and muscle mass.
Depression has already hit me. There are days I don't even get out of bed anymore and I feel like there's no point to anything. Funny how life is going great and now I just want it to be over.
I hope you will continue to post here as you go through all the decision-making process. I care about you and am looking forward to better days for you.
I don’t think there ARE any better days ahead for me. Haven’t had satisfying sex for three months now. Husband trie s to be supportive but how long will anyone really be willing to stay with a neutered farm animal.
Nobody can tell you what your side effects are going to be. You can always choose cancer ... you talked about "staying on" Lupron which means you're already taking it. Are you having truly onerous side effects? If so you have something to think about. If not, your only real option is to use the treatment that gives you the best chance of longterm survival with the best quality of life.
I don't care about long term survival if it's going to leave me a neutered eunuch. I'd rather just face my fate and go quickly. I SPECFICALLY told every doctor I saw that protecting my sexual function was my primary goal even at the expense of a shorter life. I feel like they didn't listen to me and all they care about is life extension and that they don't give a shit about quality of life.
you are correct regarding how long it takes Lupron to get out of your system…I always got 3 month shots.,,when I stopped Lupron it took 6 months to get out of my system
Anytime you want to scare the ever-living crap out of yourself, ask the internet about how long people die from XX cancer. The internet in general is a mad mix of stale context-missing info. Today's morbidity statistics are based on how long people with cancer lived over the past 20-30 years. But in the here and now we have powerful treatments, continously evolving, whose 20-30 year statistics are so good that doctors generally say we are more likely to die with cancer than from cancer. A responsible doctor will not speculate on the subject. We are in the age of precision DNA-based medicine -- see T-cell therapy. It is a furiously fast moving field.
My original diagnosis is Gleason 4+3, T2C, both sides. My treatment plan was 5 sessions of SBRT but the doctor insisted that six months of ADT would improve my odds. It's made me feel more depressed than I've ever felt in my life and if "survival" means feeling this way for 10, 15, 20 years I don't want it.
Gleason score doesn't provide a complete diagnosis... What number if cores taken were PCa+, what percentage of cores had G4, G3. What other adverse features if any were present. What is PSA history, family history, general health, what did the MRI show and any other tests done... PSMA, Genomic, etc.
Doctor isn't insisting anything, but letting you know the facts derived from RCT and Studies that tracked thousands of patients who either did what you're planning, and those who did the 6 months of therapy. The fact is a patient WILL do better with a multimodal therapy than a mono therapy treatment plan. Multiple studies across different types of therapy have proven this. Let alone for an intermediate diagnosis patient.
Not sure what your purpose is with this thread as it asked a question, then you challenge answers given.
Mortality and Morbidity are two separate and distinct things associated with treatment. It's all a choice, and that choice is yours, there is no right or wrong answer. But there's no redo or 2nd chance. Once you decide and set sail, your path is set. Bottom line is survival is generally almost 100% of patients being around 10yrs, slightly less for 15yrs. Those numbers artificially impacted by the fact the average age of diagnosis being 65yrs... So there's that. Again, survival and side effects being two entirely different things that are a result of therapy.
15 cores, two 4+3, six 3+4, two 3+3, five benign. No cancer of any kind ever in my family. Excellent general health, normal weight, had decent muscles before starting ADT, MRI showed PIRADS 4 lesions. No indication of spread outside the prostate. No other tests such as PSMA. Went to an NCI cancer center and spoke to a urologist, surgeon, radiation oncologist and medical oncologist. All said surgery or radiation were the two choices. I told them that sparing sexual function was my MAIN priority even at the cost of shortened life. They told me radiation was the best chance for that but if I did it that they required ADT. Wanted to give me six months of Lupron at once. I insisted on month-to-month.
First month and a half was fine. I was in a good mood and ready to fight. Then MAJOR depression and suicidal thoughts started and haven't abated. Doctor recommended an antidepressant but I refused because sexual dysfunction is a side effect of antidepressants and piling dysfunction on dysfunction seems like a very bad idea.
Self-medicate with weed and Ambien I get from an ex-military friend who gets it from the VA but doesn't take it. *HATE* how weed makes me feel but that feeling is at least better than the soul-crushing sadness.
My oncologist some years ago simply told me: this is not about sex anymore, this is about staying alive. I am married to a beautiful and sexy woman. I love her. Even at 69 she has got a beautiful body, as you can see in my pic. But she made peace with it that our sex days are over. Do I still want it? My whole body longs for it. It is extremely frustrating not to get an erection as I want. But I am still here. Give me some months before I write something about calcium hypochlorite. I tried it, it works.
I cannot judge anybody’s values other than my own, but I can’t imagine my life’s quality being determined by sex. To me sex has always been an important part of my life, but it *isn’t* my life. The daily, ongoing sweet relationship with my wife (of 64 years), my children, and friends is worth whatever it takes to keep it “alive!”
I understand and appreciate your concerns. If you have to go on ADT, you might consider using Orgovyx (Relugolix) instead of Lupron. It has some fewer side effects, but (importantly) you T-level recovers much much faster after you stop taking Orgovyx, compared to Lupron.
Other posters will know what I'm going to say next.
You should ask your MO or PCP to prescribe low-dose estradiol patches or gel to treat many of the bad side effects of Lupron ADT. You can initially start with 1 large patch worn for 1 week at a time (strength = 0.1 mg of estradiol per 24 hrs). It will prevent most, if not all, of your hot flashes and will help prevent the bone loss (osteoporosis) from ADT.
When you do ADT, your estradiol also crashes to very low levels because estradiol is made from testosterone. Low estradiol is what causes hot flashes and osteoporosis, among other problems (see attached Table).
You can Google papers by R. Langley (and, also, by N. Russell) about results from the Phase I and II PATCH study in the UK (1500 men) at 52 different centers of excellence, where they are comparing Lupron ADT to Transdermal Estradiol (TDE) therapy. The Phase-III results will be published this Fall.
Or, you can email me at janebob99@lobo.net and I will send you the best papers on TDE.
This is a very interesting thread. I'm 74 (had RP at 62) and possibly facing ADT in the not too distant future. My priorities are somewhere between those of a 56 year old and an 84 year old. I still have sex drive and a semblance of a sex life but at my age I would give them up in a nano-second in exchange for an effective treatment that didn't have ADT's OTHER nasty side effects. There is a lot more to QOL than sexual gratification after so many birthdays.
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