Treatment after prostatectomy

I had my prostate removed 15 years ago, 3 1/2 years later, the cancer came back and I had salvage radiation. At that time they didn’t give me ADT and it came back again, 2 1/2 years later. I’ve been able to be treated with higher level drugs since then, but they have more side effects. I have a Gleason 4+3 7

If your husband doesn’t do this soon, his cancer could spread and result in him having an untreatable case, Or at least one that can’t be put into permanent remission.

Your husband has a Gleason 9 And the highest Decipher score I’ve ever seen. He needs to keep on top of this. The least he can do is get that radiation and Orgovyx. Prostate cancer can get very painful if untreated and dying of it is excruciating. Time to move.

Has your husband had genetic testing? Frequently getting prostate cancer young is caused by genetic issues. There are treatments specifically for people that have certain genetic issues. You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
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Prostatecancerpromise.org

Kaiser Had me get a genetic test, It did take them 11 years.

That's a high Gleason and super high Decipher, maybe even a record as far as I've ever seen. I think it behooves him to be very proactive about this and perhaps consult with other doctors. Your description is serious enough to warrant talking to more people. I know there are some super sensitive scans that aren't just offered to everyone, perhaps he can get that and it'll show that his cancer is too small to be detected by normal PET scans.

Thanks for your reply. His doctor here said, he has never seen a decipher that high, and initially was shocked on his high Gleason for his age. We tried calling twice to Mayo for second opinion last year and then again this year. Was told they wouldn’t even talk with him until psa was at .4 and they had no clue when I told them about the deciphering score. She said…I don’t know anything about that. Well now he’s at .46. Seems odd Mayo had no clue about a deciphering. Gal was not friendly and I felt she was irritated with me calling wanting a consult. So we are thinking if Mayo is not concerned, are we doing the right thing with tx.

Thanks so much for your advice. His doctor did make it known he has never seen decipher that high. Was so disappointed Mayo didn’t want to see him. I’ll definitely go to that site on genetic testing. We have a 37 year old and 30 year old son. Worry about them if it is genetic. Appreciate the advice.

Unfortunately, even the very best centers - and Mayo surely is one - have idiots on staff or people filling in for someone out sick or on vacation. It happens ALL the time!
Please don’t get discouraged by this one poor episode. Your husband’s situation is very serious and he absolutely needs treatment soon. Mayo has vast experience in G9 cases and it’s probably the best place for him to receive treatment.
I don’t know where you live but other centers of excellence are equally qualified to treat him - MD Anderson, Sloan, etc.
Phil
Phil

Prostate cancer that hits young is often very aggressive and moves fast — mine was in my spine at age 56 before we even knew I had it — so any advice you read for older people with slow-moving prostate cancer doesn't apply.

Your husband is *very* lucky they caught this before it metastasised to his bones or organs. A prostatectomy removes 100% of the cancer cells in the prostate, but 0% of any cancer cells that have made it just outside the prostate — radiation will catch them (it spreads out a bit), and Orgovyx will likely pause things for a while, so that you have more time to figure out a long-term treatment plan.

I'd suggest that you go with the doctors' advice: hit it hard and hit it fast now, while you have this window of opportunity, and maybe it will never come back.

The Mayo response you received is not usual. Hopefully the moderator or another person on this forum can help you get in contact with a person at Mayo (or any other PC center of excellence) that can get your husband the best treatment possible. Now.

Sometimes it unfortunately takes aggressive action to eventually get to the right people that will better care for your husband.

His condition warrants the best available treatments and there are doctors at Mayo ( and other PC centers of excellence) that will be able quickly guide you and he through those next decision steps.

He quality of life can get better!

Well, yeah, not sure what you mean by "He already has had such a drastic change in the way he feels since prostatectomy." A year after surgery most side effects have disappeared less possibly ED and incontinence. If he is dealing with depression as a result of either, well, is he willing to seek counseling?

Given the clinical data you describe, he is high risk, ergo, his choices are ignoring and face the consequences, or, confronting it and dealing with it. I can well remember my pity party after my urologist called me with the biopsy results. He's entitled to a moment but then it's time to put the pity behind and get on with the business of managing his prostate cancer and living his life.

As I've said before, I've peeked behind the door of death by prostate cancer, it's a no for me and my medical team knows it.

Attached is my clinical history, I was diagnosed at age 57 in January 2014, high risk - GS 8, Grade Group 4, short time to BCR, rapid PSADT and PSASV...yet, just over 11 years later, here I am. I have packed a lot of living into those years, vacations, birthdays, graduations, anniversaries...wife and I are heading out to Sedona in April and then in May Lake Tahoe with our daughters.

Have I liked being on treatment, heck no.

There are ways to manage and mitigate the side effects:
Diet
Exercise
Managing stress

For me, the only difference being on versus off treatment is not in what I can do, just how I feel doing it. I've been skiing in Colorado with friends, done the Bataan Death March (26-mile hike) in White Sands and the Gravel Unbound, a 55-mile gravel bike ride through the Flint Hills of Kansas and travelled the Ring Road in Iceland with my wife while on ADT. The only restriction of treatment has been when doing radiation since it's continuous so no "vacations" during that time.

Mainstream clinical practice for his clinical history may be doublet or triplet therapy - https://pubmed.ncbi.nlm.nih.gov/36058809/, whether or not it is for a defined period or continuous is a discussion with his medical team. A question to discuss with his medical team maybe be whether to include a ARI to his current regimen of Orgovyx and radiation. By the way, where is that radiation too, the prostate bed, or, does it include the pelvic lymph nodes.

There are resources to assist you and him in understanding this journey, the Prostate Cancer Foundation is one source - https://www.pcf.org, the Prostate Cancer Research Institute is another - https://pcri.org/

Both he and you may want to inform yourselves about the terminology, definitions and treatment guidelines associated with prostate cancer. They can guide your discussions with his medical team - urologist, oncologist, radiologist and the associated specialties.

Hs, and yours. life is different now, but there is a lot of life left.

Kevin

It doesn't sound like there is a need to rush into anything. Recommend getting a few other opinions. I have found not all doctors think the same. I was on Orgovyx before radiation and would not want to do that again if I could help it. Have you contacted MD Anderson.

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 !