From what I have been reading there really isn’t much literature guaranteeing this cancer won’t come back whenever I stop the ADT, so i am really measuring my quality of life at this point. If my body is aching and my energy is consistently low, then stopping for awhile may be best decision for me. I wish I had more information on the possible permanent damage I could be doing to my body by all the side affects of low bone density, sporadical foggy cognition, muscle shrinkage etc. Does AYONE know ANYONE who has fully recovered from this cancer? I.e.-went through, surgery, radiation and a period of ADT, and is now cancer free and perhaps has a small semblance of past sex life?
Does ANYONE know ANYONE who has fully... - Prostate Cancer A...
I don't know any other prostate cancer survivors. Yes, it can be frustrating, not really knowing what will transpire over the coming decade(s).
I'm probably going to stop my ADT at 18 months, unless my oncologist gets on his knees and begs me to do 24 months. But I'm tired of the body fem effects, and keeping the libido going is a challenge. I get ED reinforcement of course, from that Loop device I shared with you. Did you try it? Giddy's coming in Sept, mind you.
Hi Allen, how long has it been? Did you have to do all 3 treatments (surgery, RT & ADT)? If so, are you still doing ADT? Have you regained body strength, libido, erections etc?
It's been almost 9 years. I just had SBRT monotherapy. Never lost erectile function or strength. It's a strange question you asked because it expresses doubt in spite of the overwhelming stats to the contrary.
That's amazing, that you never lost erectile function or strength. Were you going to the gym, eating great, and have a good relationship going that helped you?
I'm so lucky to have my own invented ED device that has salvaged my no-T-challenged ADT libido and erections. I hated the pump -- so unnatural. Without the Loop (in these pre-Giddy days), I would be forlorn and terribly depressed with the faltering of both libido and erections.
Congrats to you and have a great rest of your life.
I am almost fours years in. Stopped ADt 18 months ago and remain undectable. Once stopping it my body slowly but surely recovers
My former father-in-law never needed secondary treatment. He had surgery about 25 years ago. He turned 80 this month.
I can't answer that question for someone in your circumstances--I am one of the lucky ones for whom surgery seems to have eliminated the cancer (as far as I know at this point at least) albeit not without side effects. I am so sorry that you--and so many others--have to go through what you are going through. Fucking unfair. I do know there are many who go through treatments like yours and who live for many years because the cancer has been held at bay, and some of them wouldn't have given up those extra years for anything. I hope that in the end you will feel that way, too, and will have enough good things in your life made possible by the extra years. Or, maybe, even, the treatments will hold off the cancer long enough until some better treatments come along that will really get the bastard (cancer). That's the great hope.
I did not have surgery, but was on Lupron for 6 1/2 years and have had 72 radiations. I have stopped therapy one year ago. It seems each week I feel a little better. I can have erections but my penis is much smaller. My T count is only 27 now (not 360) and my PSA is 0.06 . I am 74 years old and had cancer for eleven years. There is still a possibility that there are cancer cells in my bones, so having my T come back slowly is fine with me. I have dry orgasms now (no clean up needed) and I enjoy my life. So I will tell you in ten years if I am cancer free! I wish you the best in your decisions and remember to just keep truckin'.
I have several men in my support group who are cancer free after more than five years. So, yes. Some of them no longer interested in much of a sex life; others very interested and optimistic so they get injections and implants and enjoy sex. So, yes. Pessimism will get you heartbreak Dreamweaverman. Mary Oliver: "tell me, what what is it you plan to do with your one wild and precious life?" (Poem 133 The Summer Day)
Data and statistics say that most men will not experience a recurrence. In my personal experience, I’ve known dozens of men who have gone five years or longer (one of them more than forty years) without a recurrence.
It’s true that if you narrow your dataset to include only men whose primary curative treatment has failed and have gone on ADT as a secondary or tertiary therapy, then all of them have, by definition, experienced recurrence. Of the men in that much smaller cohort, most (but not all) will have prostate cancer when they die years later of some other cause. Some (less than half) will die of prostate cancer.
Most of us who are in that cohort have the interestingly existential privilege of choice.
I personally know six men who rejected a longer but unhealthier life on ADT and chose instead to allow their cancer to grow. One has died a few years ago, with his cancer quite advanced; another is currently wavering in his decision now that his PSA has indeed doubled three times, regular as clockwork; two others, including me, changed their mind yet again, and resumed ADT.
You have had a difficult time. Only you can decide what’s best for you in your circumstances. My hope is to get to a period of remission that lasts a long time and try live as normal a life as possible or at least try to continue to get some pleasure out of it. Best wishes to you.
AARP did a study in 2013 of 239,000 men with PCa , and checked their death rate. They found 30,000 men died, which is 13%. Women with breast cancer had a 17% rate. However, most of the men who died, died of heart attacks, strokes, and accidents!
My grandfather had prostate cancer at 69y old and had only surgery and radiation, he had lymph node involvement too but they were regional ones.
His PSA has always been nadir since then and he died 30 years later (at almost 100!) of natural causes.
So yes, he was cured.