Hi everybody, this is the first time I post on (any) PC-forum. I can honestly tell you, for me you are a great support! Thank you!
I am 76 years (now). Quite fit. May 2021 I was diagnosed with Gleason 9 PC. Tumor was slightly outside the prostate, but no metastasis. Got ADT (june 2021) and two weeks later external RT (35x2.2; prostate only; 24 months ). Almost immediately PSA dropped from 4.2. to less than 0.1 and has stayed that way since. Apart from urinary problems and ED no side-effects.
My question: what to expect next now that ADT ends coming thursday (PSA; erectile function etc.)?
Best wishes to all of you,
Henk
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Dear Magnus, thanks for your reply. Every 6 month I did get an injection Triptoreline (agonist). In my case ADT is adjuvant to radiotherapy. ADT plus radiotherapy should cure the PC. Thereafter there is no need for ADT anymore. My question concerns the after-effects of ADT and radiotherapy. There should be a lot of people in the same situation as I am in now. I would like to hear from their experiences. F.i. development of PSA, (partial?) regaining of sexual function etc.
Radiation is not a cure for prostate cancer. You need to slow down with the treatments. Return of sexual function is problematic. you will probably have a long history of ADT drugs.
You really shouldn’t state that radiation is not a cure for prostate. I had it 2 years ago. I’m also in a support group and there are two men who each had radiation, one 12 years ago and one 15 years ago and neither have had reoccurrence and PSA’s remain stable.
Using the word "cure" when discussing cancer is not a proper protocol. You can say "in remission." Remission can be a few months or decades. That was my point.
Dear Tall_Allen, thank you for all your comments (and references). You really taught me a lot. As to your comment, I really thought 24 or 26 months of ADT would not make a sizeable difference for the PC, where it would be an extra strain for my CV sanity (I have had a PCI (4 stents). Am I mistaken?
TA: Is there a clinical case to be made for a third year of Orgovyx? My RO said that SBRT damages the DNA of prostate cancer cells, and that those damaged cancer cells can take up to 36 months to die. Can ADT such as Orgovyx strengthen that process as late as the third year after SBRT treatment?
In my case, I didn't reach my nadir for 4 years. Radiation kills cancer by inserting a hydroxyl radical in its DNA. Cancer DNA cannot repair that damage but only dies when it tries to replicate - that can take years. Until then, they are what I call zombies - dead for all intents and purposes, but still hanging around.
ADT makes cancer cells more vulnerable to radiation damage up front, and kills off cells that have escaped such damage. It may help activate an immune response too (abscopal effect).
Nabid's trial compared 36 months of ADT to 18 months, but there were certain issues in that trial (discussed in that link).
Hi Henk - I am in the same situation as you exact same diagnosis but only 6 months into ADT so I cannot answer your question regarding what to expect afterwards. However there are a lot of recent videos on the topic at PCRI.org and at your age it is likely it could take quite some time for your testosterone to recover.
As you noted your chances of cure are quite good with the treatment you’ve undergone according to what I have read.
If it were me I would not have made it to 24 months but good for you in sticking it out.
Dear OldVTGuy, many thanks for your kind and informative comment to my post. First thing to do tomorrow (I live in the Netherlands, it's now 22.20 ) will be to check PCRL.org for any answers on my question. I love live, so certainly I will go on with it.
Just to clarify...along with your radiation treatment, how many months of ADT did you do? It seems you are saying 24 months in someof your comments, but other men here seem to think you had only a few months?
Dear Maley, thanks for your comment. I started adjuvant (besides external RT) ADT on june 22 2022, so tomorrow exactly 2 years have passed. My PSA very fast went to less than 0.1 and my testosteron to less than 40. It has stayed that way . Side effects: weight loss (about 10 kg) and muscle loss, (slight) urinary problems, osteopenia, no loss of libido, and, yes, practically no erection or orgasm. My question is: what to expect now that ADT has ended. Will PSA rise again, how much so and what does that mean? When will I know that the RT was successful (or not)? Will the side effects of the absence of testosteron stay or even get worse (if testosteron does not come (fully) back)?
Best wishes, henk
Glad you're coming off of ADT. I hear a lot of people say that you should remain on it for good. The problem with ADT is Low T and Low T is responsible for a whole host of comorbidities. So while on ADT, you may have near undetectable PSA, but as a result of Low Testosterone, you may have depression, heart disease, diabetes, osteoporosis, high cholesterol, anxiety, and more. Men with Low T have shorter life spans than those with normal T and also are at risk of developing Alzheimers much sooner. To me, its a matter of weighing my options: a lot of symptoms of Low Testosterone or the possibility that the prostate cancer will grow. I would rather have normal T levels and monitor PSA rather than give up Testosterone altogether in case it might raise PSA levels. Its a matter of quality of life versus quantity of life. Your PSA level might rise; or it might not. It will probably take some time for your body to return to normal T levels. This is just from the research I've done. I'm not going on ADT ever; not with lifelong battle of Low Testosterone (currently its 38) and all of the attendant problems of Low T. I will be starting adjuvant therapy as soon as I fully gain continence; the way its improving, I expect another 2 months to full continence. I will then get radiation and I will refuse ADT. Thats my decision. I hope you'll come to make you're own decision and not be swayed about remaining on ADT for life. Its not worth it, in my opinion. But you get to make that decision. No One can make it for you.
I very much agree with your description of the choice. However, my understanding is that the suggested duration of ADT is based on studies that have an endpoint of PCa -specific mortality, or overall mortality......... ADT is advised when there is a belief that it may help extend the time to end-stage PCa...which many men think has worse symptoms and side effects than those caused by low T .
Dear Outeast, thanks for your thoughtful and supportive comment. I too have a naturally low testosteronlevel. I think that may be the reason ADT has not put me up with (very) serious side-effects. The other side is that now that ADT is ending testosteron may not easily come back. I will have to cope with that. That holds also for my (old) sexlife. More fondling and less or no (active) penetrative sex. Should work out for me.
Henk, to answer your " what can I expect question " directly here are some thoughts. I've been on adt and stopped twice, so have personal experience with it. Have also undergone radiation so have experience with it.
At age 76, it could likely take 6 or more months before your T returns to normal. In some men your age it will not return to normal. Until it returns to close to your pretreatment level, you will continue to experience urinary and ED problems. Some of your urinary problems could be the result of the radiation and not ADT. You might not notice other issues resulting from ADT, but your energy levels, blood glucose, cognitive functioning , and other things may have also been affected. These too should improve if your T returns.
Your treatment may cure your cancer. I know of men with a Gleason 9 who, following radiation and 2 years of adt, remain at a psa around 0.1 nine or more years post treatment. Time will tell. You will need to monitor your psa regularly every 3-6 months for probably 5 years, and if it remains low, hopefully below 0.5, your doctor may then decide annual psa tests are appropriate.
You may see your psa rise as T returns. Because you still have a prostate this is normal following radiation. Men undergoing radiation do not reach a psa nadir often until 36-40 months post treatment. If your psa rises 3 consequitive times every 3-6 months or rises above 0.5 your doctor may wish to order a psma pet ct to determine the cause.
Dear Scott, thank you very much for your informative and about complete answer to my questions. I will keep it at hand as time unfolds (what is now) my futere.
I ended my Lupron 4 months ago after 18 months (EBRT and Brachy). Slowly getting T back, feeling a bit stronger, and sexual function increasing. I'm 67 so expect that Viagra will continue to be a friend. 😀
I had a similar situation, radiation therapy and 2 years af ADT, in my case Lupron. At the end of the 2 years my Testosterone was 18.7. After 6 months removed from ADT it increased to 140. Two years later it stands at 366. I am 70 years old and fit and active. The hot flashes, which were quite severe on Lupron, have greatly reduced. Energy is back and so is Libido but unfortunately ED remains. My cancer had spread to the surrounding tissue, including one seminal vesicle so perhaps my IMRT was more expensive than the radiation you had?
Things have mostly returned to normal except for cramping in my thighs and ED. Not sure if muscle damage from Lupron is the culprit here, may be due to heart disease and poor circulation. As others have said, exercise is your best friend and will help with recovery. Best of luck.
Dear Stellabell, thanks for the sharing of your experiences. It is good to hear that your testosteron has come back to an acceptable level (with consequences for energy, muscles, heart, bones, libido etc.). Too bad that ED still persists. Can any of your doctors tell you how so? I'am sorry to hear your cancer has spread to the surrounding tissue. Do they have given you any explanation for that? Are you treated for this?
They discovered the tumors in the surrounding tissue before the treatment, hence the radiation to those areas. PSA is still less than 1, so no worries yet about spread. As for ED, only tried medication so far to no effect.
I have no input to your question here but just wanted to say I heard the positivity in your words and thank you for it and hope for all the best for you as well.
I'm new here and it's reassuring to read these replies. I was diagnosed last week w/ Gleason 7 (4+3) . My PSA in Feb 2023 was 7.4, in April was 7.3, and just now came back 10.4. Had an MRI biopsy with 12 cores, 7 of them cancerous. Going for a PSMA/PET end of the month.
This has been really helpful, because my fear is not the RT (probably will be EBRT per the initial consult with the RO). I dread the ADT and the more I read about it, the more unhappy (understement) I am with what I'm learning.
I'm hoping for a short-term ADT of 4-6 months, and then very active surveillance of PSA thereafter. Of course, all this can change once my PSMA/PET scans come through.
One question I have after reading this: should I go and get a pre-treatment Testosterone test, so I have some reference point in the future?
Hallo Conchjoe. I hope your PSMA-scan will be OK. In that case, with a Gleason score of 7, you probably do not need any ADT and a testosterone-test will not be necessary. However, if you do get ADT, then I certainly would take a pre-treatment testosterone-test (and keep track of your testesterone -level). My advice: wait for the results of your PSAM-scan.
Keep your courage up. I'm on ADT for a year and a half and my experience is very few side effects. Most people with few side effects don't bother posting. So what you read about ADT is biased by the people who have horrible side effects and want to share about that. But they might not be representative. And the benefits are quite likely to be longer life expectancy.
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