Surgery? Radiation? Can I have an independent suggestion?

Posted by hanscasteels @hanscasteels, Dec 19, 2024

As a Canadian, I apologize in advance for my self-centered question. I have done all the preliminaries and now must make a choice. When asking urologists, they’d advocate for “cutting”. When talking to radiation oncologists, they’d say “radiate” - statistically, the odds are equal or better, and the side effects - well, perhaps, eventually, you might have to deal with those. Which leaves me, as someone reluctant to understand issues related to cancer that I never wanted to know, to make a decision.

In short, here are the parameters: over 4 months, PSA readings of 26, 21, and 25. Biopsy showed cancer in the left nodule, Gleason 3+4 in 5 out of 12 cores. Cribriform and suspected perineurial invasion. Bone scan and CT scan showed no metastasis. PET scan shows a significant uptake (3.7) in the prostate but also, no metastatic activity, except for a minuscule uptake in L4 lumber (but judged to be benign). That doesn’t eliminate microscopic events, I suppose. Also had a prior appetizer of a heart attack and had CABG (9 bypasses).

The question now: what would be an optional approach for me, specifically. ChatGPT says a short course of agonist/antagonist ADT, Brachytherapy, and EBRT. The urologist says “if you want it gone, call me”. The radiologist says “the isotopes are at your service”. How on earth can I make an informed decision that’s best for me if everyone advocates for what they do/know as the best approach?I suspect some answers might be - it depends what consequences you want to deal with - granted. But medically, what gives me the best chance to conquer this, well, shit?

Where would you take it?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@redroadtraveler

I am 81 years old and coming to the end of the proverbial five year life cycle of stage IV prostate cancer which has metastasized throughout my bones and lymph nodes.
I have had every oncology treatment available except for chemotherapy which was my choice to not undergo.

Cancer has a price tag. Before cancer IS the good old days. Whatever your current cancerous condition IS where are at now. There is no "cure" for cancer. There is only delay. You will have better days and worse days no matter what treatment protocol you are on . All on that downward spiral that leads to our recognition and acceptance that no one gets out of this alive.

Tough words to hear, but the sooner you can accept this the better because that allows you to make the best of your UP days and to cope with and accept your DOWN days .

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Actually, many people who get prostate cancer are completely cured. A higher percentage than those that Have it for the rest of their lives.

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You should consider getting yourself a Genito urinary oncologist to help decide what the best option is. They are trained in prostate cancer specifically, Unlike the radiation oncologist and the urologist.

The fact that you have cribriform Make your case more aggressive, Just the thing a GU oncologist is a specialist with.

Not sure if you are working with a center of excellence, That could make your choice a lot better since they would have a team look at your situation and decide what is best

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Being based in Canada might eliminate the choice. It’s a system of referrals… i am leaning toward EBRT with Brachytherapy and ADT. Although… the oncologist I saw last week said “I needed to qualify for brachytherapy… if for some reason I don’t, then surgery it is.

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Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

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I would suggest a couple things. For some excellent vetted information try the Prostate Cancer Research Institute. They have some excellent videos discussing treatment options. The Medical Director, Dr. Mark Schols, is a medical oncologist who does neither radiation or surgery himself, but does serve people with prostate cancer. PCRI also has a peer support hotline and they respond quickly and are very helpful. https://pcri.org/helpline
I was fortunate to receive treatment at Mayo, Rochester, had Radiation and ADT. 18 months out I'm in good physical shape and PSA continues to drop. Last numbers were 0.13.
Everyone's experience is unique so my best suggestion is to get expert advice and once you make a decision don't second guess. I'm 78 and was 76 when diagnosed. You will find that the anxiety subsides with information and deciding on a treatment plan.
Also, stay active and let your close friends know what is going on with you.
Good Luck

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I had my prostate fully removed as I did not want to have cancer in my body. The results of previous tests indicated there was cancer on the verge (edge) of the organ and I was concerned it would not be able to be contained if it spread beyond the organ. I also learned that removal was not as easy after radiation than before.
So now my PSA is is steady at less than .04 but I have ED because they took out my nerves as well. I was incontinent for quite a while until I was offered an Artificial Urinary Sphincter. It works well. So o am a fan of removal surgery and still have the option of radiation if the cancer comes back somewhere else.
Hope this helps.

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@hanscasteels

Thank you very much. Good to know. Doesn’t exactly ease my anxiety… but better to be informed.

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I'm 31 months post RP and I also was a 3+4. I spent a number of months debating options with similar interactions with various specialists while going deep into research papers. At the end of the day I came to the conclusion that RP offered the best statistical outcome. The surgeon ended up taking out the prostate and I lost one nerve bundle. Working backwards and of highest priority, my PSAs are at zero. Now for the information most men care about next to remaining on this side of the dirt- With a hell of a lot of effort, diligence(using Trimix for about 5 months) and patience in year one post op, I still have a good erection, I have roughly 50% of the previous sensation during intercourse and I urinate more frequently than before but not to a level of annoyance.

Good luck and what worked best for me, may not be the best option for others.

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Brachy sounds good as a choice, not sure, as I had BPH so it was not an option. Another option is Tulsa. There is also Vanquish at some clinical trials

Tulsa
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
If wondering about Tulsa Pro from a science point of view, here is a basic Tulsa science overview article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/
Conclusions:
“As an alternative to conventional treatments, TULSA is safe and effective for prostate tissue ablation in men with primary PCa. There is also evidence that TULSA delivers effective relief of urinary symptoms while treating PCa in a single, low-morbidity procedure. The likelihood of freedom from additional treatment or potency preservation is associated with the planned ablation fraction.”
Tulsa or HIFU - what is the difference

Tulsa Pro uses some of the same ultrasound technology for the ablation as HIFU, but they are not alike. Tulsa Pro can handle a person with a fair amount of BPH, HIFU cannot. HIFU the lesion has limited locations that it can reach so the lesion is best if it is near the rectum, as it is done that way and only reaches a limited area in the prostate. There are other limits some places put on HIFU, and some places put limits on Tulsa too. These are limits the maker of the equipment has not put on using it, as the places doing studies almost always put more limits on who they accept. So bottom line is if you go to a place that is part of a study they may not accept you for TULSA or HIFU or Vanquish, where-as a private physician might. Meaning get multiple opinions.

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Vanquish
Something new and an alternative to Tulsa, can't speak myself to it, just to Tulsa. But it is something to read on if you are studying what to do.

Trials
https://clinicaltrials.gov/study/NCT05683691

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@cancerfreekevin

I'm 31 months post RP and I also was a 3+4. I spent a number of months debating options with similar interactions with various specialists while going deep into research papers. At the end of the day I came to the conclusion that RP offered the best statistical outcome. The surgeon ended up taking out the prostate and I lost one nerve bundle. Working backwards and of highest priority, my PSAs are at zero. Now for the information most men care about next to remaining on this side of the dirt- With a hell of a lot of effort, diligence(using Trimix for about 5 months) and patience in year one post op, I still have a good erection, I have roughly 50% of the previous sensation during intercourse and I urinate more frequently than before but not to a level of annoyance.

Good luck and what worked best for me, may not be the best option for others.

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Cancer free, I’m jealous you’re able to have sex, my surgery was in August, they also had to cut one nerve , I take 5 mg of cialis every other day and 20 mg when I try to get an erection . Even with a pump I’m having no luck which frustrates me more each day . I have a great marriage of 40 yrs and never went more than a few days without love making. Everyone says be patient it not easy with a much younger wife . Just had a pet scan since my PSA was .36 , will find out next week what the next step will be . Plan to try the gel and or penal injection if it’s not too soon to try .

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@bjroc

Brachy sounds good as a choice, not sure, as I had BPH so it was not an option. Another option is Tulsa. There is also Vanquish at some clinical trials

Tulsa
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
If wondering about Tulsa Pro from a science point of view, here is a basic Tulsa science overview article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/
Conclusions:
“As an alternative to conventional treatments, TULSA is safe and effective for prostate tissue ablation in men with primary PCa. There is also evidence that TULSA delivers effective relief of urinary symptoms while treating PCa in a single, low-morbidity procedure. The likelihood of freedom from additional treatment or potency preservation is associated with the planned ablation fraction.”
Tulsa or HIFU - what is the difference

Tulsa Pro uses some of the same ultrasound technology for the ablation as HIFU, but they are not alike. Tulsa Pro can handle a person with a fair amount of BPH, HIFU cannot. HIFU the lesion has limited locations that it can reach so the lesion is best if it is near the rectum, as it is done that way and only reaches a limited area in the prostate. There are other limits some places put on HIFU, and some places put limits on Tulsa too. These are limits the maker of the equipment has not put on using it, as the places doing studies almost always put more limits on who they accept. So bottom line is if you go to a place that is part of a study they may not accept you for TULSA or HIFU or Vanquish, where-as a private physician might. Meaning get multiple opinions.

----
Vanquish
Something new and an alternative to Tulsa, can't speak myself to it, just to Tulsa. But it is something to read on if you are studying what to do.

Trials
https://clinicaltrials.gov/study/NCT05683691

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So this Vanquish utilizes water vapor….sounds like steam. A guy I know had BPH and said his dr was going to use steam; this was about 3 yrs ago so maybe it was similar.
I have not seen him since but I do know that he was not happy with the result and said he might’ve felt even worse. This went on for months and then we lost contact.
Sure hope they improved this technology!

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