Treatment after prostatectomy

Thanks for the info. I’d say we need to learn this terminology. Wow..foreign language. We have yet to meet with the oncologist for discussion of his radiation treatment. Call should come this upcoming week. It’s very irritating this whole process has taken over a year to start treatment. He did start the Orgovyx on Thursday. His stamina has dropped drastically since prostatectomy. Lays down a couple times a day, on his days off. He’s never been one to complain or feel sorry for himself but he has had a lot thrown his way this past year. Thanking God he was only incontinent for about a month after the surgery but the ED is very stressful for him. I just want him here with me. All that matters to me. Doc did tell us it’ll be about quantity over quality for him. He definitely is getting depressed. Have a call to our GP for appt to discuss maybe antidepressant. Thank you for taking time to give me your thoughts. It’s very much appreciated. That graph you showed I’ve never seen one. I was only given his decipher, psa levels, scans and biopsy results. Thanks again.

@jeffmarc offers useful thoughts on depression and exercise.

I'm attaching the University of California San Francisco guide to ED.

Sex is different after surgery but there can be sex. One has to change the thinking from the dominance of traditional sex to one of more variety.

I'm also attaching an article on the role of exercise. He does not need to do Ironman's, find something he likes and do it, for me, riding my bike, playing Pickleball, hiking, swimming... It should involve some form of cardiovascular and resistance exercise.

That's "nice" that you're meeting with an oncologist, but, I have never discussed radiation treatment with mine, I have a radiation oncologist who does that. Your oncologist can discuss ADT, ARIs. Chemotherapy...

That chart is one I make, useful when discussing with one's medical team, a picture is worth a thousand words.,,

Finally, an article that discusses there have been many advances in treating advanced PCa, yes each has it side effects, but people on this forum will say, "we're still here...!"

On Thursday, I was at an advanced prostate cancer online meeting, and one of the people there was talking about how much depression he had when he was on Lupron. He ended up going to a psychiatrist and being prescribed Zoloft. He says a completely relieved him of the depression and he was able to Go back to his normal life.

When you’re on drugs like Orgovyx you need to exercise. It may seem counterintuitive by getting out and walking a couple of miles a day at least And also doing some exercises with weights. A strange as it sounds after doing it it you actually get more energy.

I was diagnosed in Dec and had a Gleason of 9 but I also have the BRCA 2 genetic defect which leaves me predisposed to highly agressive prostate cancer. I am lucky that my doc caught it early because my MRI and PSMA Pet scan show it it all contained in my prostate.

I saw 5 docs after i was diagnosed and i was told that after surgery, because of my genetics, it will (more than likely) return and I will have to go on YEARS of hormone thearpy along with radaition therapy. that didnt sit well with me.

I was lucky to find a study that is targeted to my genetics and am currently enrolled in the NePtune trial at University of Pennsylvania which is 6 months of hormone therapy (Lupron) along with the drug Olaparib. the idea of the study is to "kill" the cancer before surgery and push the chances of reoccurance much further down the road. 2 months into the trial and my PSA has gone from a high of 7 down to .77 with the goal of .1 or lower.

The trial results have been promising and those that have completed the trial and had surgery most have shown NO cancer in their prostate tissue post surgery.

There is no doubt this is a tough road for all of us and we have to find a way grind through it. I would seek out other opinions - look everywhere, see as many docs as you can. In my journey I found that all the surgeons were smart and capabile but not all had the knowlege for MY set of circumstances. When I questioned them about BRCA 2 many had no idea of the effects of that defect and surgery. Keep looking, keep picking the brains of smart docs, and find one that you are comfortable with but don't delay.

In the end, your husband has to keep fighting, flip the bird to cancer, and never give up. Surround him with family, friends, and keep him busy so he doesnt have too much alone time - support is a HUGE part of the mental battle. I dont like to be alone except for when I'm meditating and i focus on my prostate, the cancer cancer and talk to my body saying "look, the cancer is here - GO GET IT!" I'm sure I can't beat it that way but who knows- it sets my vision to the known enemy in my body and to keep fighting it.

My fav song quote is "in life having the upper hand's a myth, your only fighting chance is too stubborn to quit" - Zach Bryan.....

Good luck and sending good vibes your way !

Wow..that is amazing. Now I’m wondering if we shouldn’t have had it even removed. He too had a Gleason of 9. Doc here pushed for the surgery and told us it’s a “no brainer” for treatment, because we were hesitant. I said no brainer for you doc, but we don’t know shit about any of this. Then when the decipher came back at .99 he was very insistent. I’ll call Mayo on Monday again. Will be my 3rd time. Feels odd to have to beg to be seen by them. Thanks for taking the time to reply. Appreciate it.

Have you had SBRT radiation to try to zap that metastasis on your bone?

They should’ve done salvage radiation as your PSA was rising. It may be too late now.

Where are you going for treatment, It seems you are not being treated in a timely manner. Your PSA should never been allowed to rise so high (5.5) without treatment.

You should try to get yourself to a center of excellence or a Genito Urinary Oncologist, They specialize in prostate cancer and can spend time researching the latest treatments. Medical oncologist work on all different types of cancers so that is not the type of person you want leading your case.

Your cancer has now reached a critical points, so be proactive.