I was diagnosed with stage IVb prostate cancer in June of this year at 35 years old. I had been experiencing symptoms for nearly a year before diagnosis, but being so young and in good health, my concerns were largely dismissed. When I was eventually diagnosed, the cancer had already spread, and I had to have nephrostomy tubes due to cancer invading my bladder and blocking my ureters. PSMA also showed spread to abdominal and chest lymph nodes, as well as two spots on my spine.
I was started on triplet therapy and just finished my sixth round of docetaxel last month. The nephrostomy tubes have been removed. My updated scans show “Decreased retroperitoneal and pelvic adenopathy. No new findings of metastasis in the abdomen or pelvis.” Overall the cancer has shrunk and things are looking much better. PSA is down to 0.1
I’ve had genetic testing done and nothing was found.
I’ll continue the ADT and abiraterone and have my PSA levels checked every 2 months. Aside from diet and exercise, do you guys have advice for what I should be doing?
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I think you broke the probability curve for the age at which anyone is diagnosed with of prostate cancer. I'm glad triplet therapy worked so well for you.
I’m so sorry you have to deal with this at such a young age. It looks like your treatment is going well, so my advice - and forgive me if I’m too straight forward about this:
1) This situation and ADT can be really hard to deal with mentally at times. Please make use of therapy - and antidepressants if needed.
2) Sex and intimacy: This will most likely change now when you don’t have any testosterone, but great sex, closeness and intimacy is still possible - you just have to add some things to your to-do list:
2A) If you have a partner, please make sure to communicate, be open and talk about this new situation since it affect them too.
2B) Get a penis pump and use it every day for a few minutes. Being on ADT means your nocturnal erections will stop happening, and they are needed to keep your penis “alive”. Using a pump will help your penis get oxygen and keep it from shrinking. This is just another exercise you need to do.
2C) Ask your doctor about viagra or cilais to help with erections.
2D) If viagra or cilais isn’t enough help for erections you can use bimix/trimix and other medicines you inject into your penis to create erections. This isn’t as weird or painful as it sounds. You get used to it.
2E) You can still have great sex without an erection.
2F) Being on ADT and the changes to libido it brings can be tough to handle, but please keep in mind it can open new possibilities. There are many men on this forum who can testify to having found even more intimacy and closeness with their partner while on ADT.
Regarding the daily 'few minutes' of penis pump use, think more 10-15 minutes. My take on this is to get a good fit so you don't suck your testicles and surrounding tissue into the tube. Idealy you want the tube to seal around your shaft when errect, not seal on your crotch (testicles again). Then switch on (yes, get an electric rechargeable one unless you have a grip like a gorrilla) on low setting untill you feel the suction, then release the vacuum and let things deflate a bit and then keep repeating untill fully erect. Hold the vacuum for a few seconds then release/deflate/repeat cycle 10-15 minutes. Holding the vacuum too long can result in fluid being drawn into the skin forming 'blisters' that take a while to be reabsorbed.
This is for maintaining blood flow and I found it better than just creating an erection and keeping it under vacuum which seems like stagnated blood rather than fresh blood each cycle.
Tadalifil Daily is low dose 2.5mg that maintains a background level that's cardiovascular protective 24/7, then take a boost if needed for sex.
Sorry to hear that this has happened to you. I was 55 at diagnosis. That was 6.5 years ago. Life will change for you but it is not all doom and gloom. I had a similar great response to chemo and ADT at diagnosis. My PSA continued a slow decline for many months after chemo finished. The following year my bone tumours were no longer visible on scans.
Life can still be great even with the medication side effects. It takes a while to get over the emotions of the diagnosis ... despair, anger, questioning, crying, etc. but it does get better. In a strange way, my diagnosis made me appreciate my life even more. I no longer put off doing things that I always wanted to do.
I have basically carried on living my life as I did before my diagnosis. I try to get exercise and eat well but I don't deny myself the occassional beer, steak, and dessert. My doctor says I still have years left to live.
Mike1971 had some great points, especially 2A and 2F. My cancer diagnosis really brought my partner and I closer together. While there are some sexual activities we can't do anymore, we remain a very loving and affectionate couple.
Best of luck to you and reach out whenever you want.
That’s great to hear, thank you Mark. One of my bone metastases still showed up on my most recent CT and bone scan. My oncologist told me that it actually looks good and is new healthy cells replacing the cancer. I was hesitant to believe him, but I feel better after hearing that from you.
I was actually initially relieved when they finally told me it was cancer after months of increasingly severe symptoms. But I then became pretty distraught when I was told how far it had spread.
It’s so frustrating when doctors don’t listen because you don’t fit the norm. But I now have a great primary care doctor and oncology team.
Wow and I thought I was young at 44, with limited cancer spread. However, I have been fighting this for 24 years in September and most of the treatments I have taken since were not available at diagnosis. New treatments are out there and many more are in clinicals. Never lose hope, never give up. If you have not already seen it, watch the Jimmy Valvano speech on You Tube.
That’s incredible to hear. I hope with current and future developments in treatment to live for a long time. I have not watched that, I will check it out
Wow. I'm gutted for you being so young. Is there any family history of prostate or breast cancer?
From a supplement point of view, I would add BROQ, a powerful Sulforaphane. Modified Citrus Pectin also gets positive feedback, although I am yet to use this. These would be in addition to the ADT and Abiraterone, please keep on these unless your oncologist advises otherwise.
Good luck mate. I've been looking at Actinium/J591 as possibly being the silver bullet. Worth discussing with your oncologist. There are some anecdotal comments from some people that Dr. Kwon is the best medic to contact if like me you are stage 4. He is not a oncologist but specialises in advanced prostate cancer. Again, it may be worth asking your oncologist to reach out to Dr. Kwon.
Prostate cancer is pretty prominent on my father’s side, but usually not until 60-70 years old. There is some history of breast cancer in the family as well, but none of the cancers were in people under 55.
I have not heard of either of those supplements, I’ll look into them, thanks for the suggestion. I haven’t heard of Actinium/J591 either, I’ll research that. I’m hopeful that there will be plenty of advances in treatments that I can take advantage of.
At age 35 i would dig deeper into genetic testing, family history.
When you say the genetics test found no mutations, does that include somatic (tumor) AND germline (blood)?
Which genetic testing was done? I would go with the guardant360 which now covers over 749 genes and is covered by medicare although your to young for Medicare unless you got disability approved.
I believe the mutation in the tumor was TP53 but the germline had no known mutations. The testing was done through my oncology center, I would have to find my paperwork to see which facility did the actual testing.
TP53 is a very serious mutation so when you said nothing was found, that is a miss interpretation of your genetic testing.
Also your hospital must have a portal where you can access all of your testing results and communicate with your doctors. You can also link most of your health institutions into the portal.
That’s fair, my genetic counselor focus on the germline, and didn’t say much about the tumor having the tp53. My understanding was that tp53 was an extremely common mutation in cancer and didn’t change the treatment options. I’ll have to speak with a genetic counselor again and speak with my oncology team, but I know they are aware of the results.
I was diagnosed Stage 4 with neuroendocrine features shortly after my 71 st birthday.. I had wide spread bone mets. My treatment was triplet therapy-nubeqa, lupron and docetaxel. I am about three years out. Recent PET revealed no metastases.
I am now just recovering from a Staph infection which left me bed ridden for 2 months. I am now almost 74. I supplement with Omega 3, K2 and D3. I would recommend paying attention to potential infection risks. I spend 4 days a week in the gym. Exercise, exercise …great stress buster. I also meditate daily. It’s sad you have to endure this struggle. Practice gratitude. ..I have No doubt you will see a cure in your life time.
All good advice here but I’d line to add— physical strength. Start building now and maintain as if life depended on it. ADT will sap muscle mass, stamina, and bring fatigue. Fight it now and stay ahead of it for ever. If you’re not a gym rat, become one.
I’ve already lost a ton of muscle and strength due to the nephrostomy tubes making it extremely difficult to exercise. I’m trying to get back into the gym, it’s been difficult.
So tell us where you're located (state/city) and where you're being treated (and Doc's name too). All info is voluntary but helps you and will help us. Thank you.
BTW This is a great site for information and camaraderie (and some humor once in awhile). Keep posting!!!
For those who respond well to treatment, can you go off ADT? This trial will follow those who stop ADT. I was on Lupron + abiraterone for 4.5 years. Always <0.01 PSA. I stopped my meds in June 2022. Still <0.01. In fact with today's blood draw I am now 7 years at <0.01. I hope you continue to respond well. Keep working at exercise, even if it's just a walk.
That’s great to hear about. My oncologist wants to wait at least another 1.5 years before I try to take a break. But that’s really exciting to see that people are able to stay off adt for years
maybe search IP6 for cancer. There are some things like ginger, turmeric, berberine,reveratrol,quercitin,sulphoriphane,that may help. Eat berries,cruciferous veggies, onions, garlic, leafy greens. drink lots of green tea
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