thoughts on what I should do.
48 years old , So How screwed am I. Dr. gave me two options radiation pellets or a Prostatectomy. Pet scan is next week. right now its panic and wait. was told if I did radiation then surgery was not an option after the fact as no dr would remove the prostate after I had received radiation first. but If I removed the Prostate and the cancer came back then I could get radiation afterword's.
SPECIMEN C: PROSTATE, LABELED AS "RIGHT APEX", CORE BIOPSY:
- ACINAR ADENOCARCINOMA, GRADE GROUP 3 (GLEASON SCORE 4+3=7)
- PERCENTAGE OF GLEASON PATTERN 4: 71-80%
- CRIBRIFORM GLANDS: NOT IDENTIFIED
- NUMBER OF POSITIVE CORES: 2 OF 2
- TOTAL CORE LENGTH INVOLVED: < 5%, 6-10%
- PIN4 MULTIPLEX IMMUNOHISTOCHEMICAL STAIN SHOWS THE ABSENCE OF BASAL
CELLS (p63 AND 34betaE12) AND IS POSITIVE FOR AMACR STAINING WITHIN
GLANDS OF INTEREST
- SEE COMMENT
Comment: The Gleason grade 4 tumor shows some nuclear stratification and
tufting suggestive of ductal features; however, the quantity of tumor
present precludes a more definitive diagnosis of ductal carcinoma.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
If my cancer had been contained and localized I would hav investigated the Tulsa pro procedure. My understanding is it is more like ablation and safer than getting nuked.
You are in a real financial/insurance bind for sure. Totally get the feeling….
If you have to go the VA route, I suggest you reach out to either friends (ex or current military) or start looking for websites such as this one solely for veterans and their experiences with various drs and hospitals - they are not all the same!
I’ve heard VA horror stories, but also stories of excellent care, so where and who treats you does matter.
You say they are giving you a choice of surgery or seeds- seems crazy since there are more options as far as radiation is concerned…
In any event I will parrot the advice of others and recommend surgery because of your age; if it comes back at any point you can then do radiation.
So I would use whatever means at your disposal to find a good surgeon in the VA system, even if it means traveling to another state - it’s THAT important.
FWIW, a good friend of mine left his lucrative oral surgery practice to be a VA oral surgeon; he needed to be closer to his elderly parents. Another, also an oral surgeon, did likewise after 9/11. There are plenty of excellent, dedicated men and women in the VA system - just gotta find them.
Comment on DaVinci vs "by hand" ("open") prostatectomy. I'm a retired surgeon (not a urologist). Towards the end of my career, DaVinci robot became available @ my hospital. One of my younger colleagues jumped right in and trained on it. I did not, worrying that I might not have enough time left to get sufficiently skilled at it.
IMO from what I've seen and discussed with urologists, there's no question that the robot allows much more precision at the fine dissection needed to "tease" the nerves away from the prostate capsule. It takes longer, and requires the development of skill in technique. But if you can find a doc who's done at least 500 cases, you're better off with the robot.
That takes me to the risk of side effect of erectile dysfunction after surgery...a real problem for some men. Especially someone who has maybe 40 years of potential active sex life ahead of him.
There are many scare stories of ED, it does happen but I believe that it is much more preventable than commonly thought. Rather than go into a long discussion of how to manage that, I suggest searching on this forum and Google for penile rehabilitation after prostatectomy. Following a daily, multifaceted training program, I returned to full sexual function about 7 months after surgery @ age 74.
You have more than two options...
As others have said, take some time to inform yourself, learn about , their definitions - ADT, ARI, Doublet, Triplet therapy, Gleason score, Grade Group, Staging System....Doing that can inform your discussions with your medical team.
Next up may be to familiarize yourself with the guidelines, a starting point may be the NCCN Guidelines - https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459. These are population based and while current, may lag at times behind data emerging from medical research.
These are the science of treatment. The art comes into applying them to your specific clinical data.
So, making a decision is part science, part art. You have choices, there is unlikely a definitive decision, only a best one combining the science and the art.
You can do surgery, side effects are generally well known, questions is, which ones will you experience. In part that may rely on the skill of your surgeon. I had surgery in March 2014, no incontinence, sexual function returned around 12 months.
You could do radiation only, just had a friend go that route.
For De Novo PCa, you could do doublet or triplet therapy but that's generally for advanced, not localized.
I was 57 when diagnosed and had my surgery. I am high risk, had treatment four times. In the 11 years since my diagnosis, I have been on treatment three years, off eight. I packed a lot of living in those 11 years, yo may be able to also.
Kevin
https://prostatecancer.net/living/quick-treatment-decision?utm_confid=95e2eb1779863206f3e8fd1ce1ac33af5816e7c27bfadae78eb85caf23a73695&utm_term=Article_1_Button&utm_source=ActiveCampaign&utm_medium=email&utm_content=How%20NOT%20to%20Make%20a%20Treatment%20Decision&utm_campaign=ProstateCancer%20net-Newsletter-03%2F04%2F2025
I had mine removed over radiation. Cancer came back 2 yrs in lymph nodes undergoing lupron the last year and had 46 radiation treatments I go back next week to see game plan good luck to you it’s a tough decision
For context in this discussion, but also for those of us who are not yet years out from our surgery, would you share your age when you got RARP, the Gleason at the time, the post-op pathology or any other information that might help us understand how prostate cancer progressed past the initial treatment?
I'm particularly interested in this because I lost no lymph nodes as the surgeon found no cancer in them - but I did have a bulge that could be problematic for me down the road.
In the end, I think the choice is just informed guesswork. As I've mentioned before
1. If the cancer is still contained entirely inside the prostate, a prostatectomy will eliminate it permanently, often without damage to surrounding organs, but ...
2. ... if some cancer cells have already escaped, then a prostatectomy will miss them, while radiation (which continues to spread for a few weeks after therapy finishes) has a good chance of catching them if they're still lurking in the vicinity, but also ...
3. ... because radiation keeps spreading a bit, there's a risk of damage to your bladder and rectum (and also a chance that the radiation will catch any yet-undetected cancer cells there before they multiply and make new tumours).
There's no way to be sure if the cancer is all still in the prostate — there's no test yet that can detect individual cancer cells — so it's about balance of probabilities: e.g. a low Gleason score and no risky genetic mutations give you a better chance that it's all still in your prostate (but there's never a guarantee).
I honestly don’t think a surgeon can “see” cancer in a lymph node or not- which is why most of the centers of excellence recommend removing at least six on each side.
Imagine them on a string running from your prostate and down toward the pelvis.
The pathologist examines them sequentially, first to last; if he sees cancer microscopically in the first, he then looks for it in the second and then down the line and so on until he hopefully finds none. If he does find cells then you are usually put on ADT and offered salvage therapy or surveillance.
Not removing a larger number of lymph glands is controversial. My surgeon, for instance, only removed the closest one to the gland ( I believe it was called the “bullseye node” in the path report) and I learned later that he was sued by some patients for doing just that.
Man, was I pissed!! But after going on various forums I discovered that a lot of surgeons do this for one reason or another.
I don’t agree with it or like it, but I am not a cancer surgeon so who am I to say?
You are young, incontinence, goes on for months, sexual activity is near impossible, and semen production stops if you have Prostatectomy. I am 75 had RALP December 30. My decision was easy. Your choice should be what’s best for you and your family as quickly as possible. In the words of Spock “live long and prosper”