Newly diagnosed - r/ProstateCancer

20

u/labboy70 1d ago

Don’t make any decisions until you speak to doctors at a comprehensive cancer center who specialize in prostate cancer Gleason 9 is aggressive and not something you want to mess around with. Don’t rely on the opinion of a community hospital or HMO based urologist. Get to a center of excellence and speak with a radiation oncologist and medical oncologist before you decide anything.

Surgery may not be the best option with a Gleason 9 due to the high likelihood of microscopic spread which needs ADT and radiation.

Check out the Prostate Cancer Research Institute website or YouTube channel. They have lots of good information about Gleason 9 / 10 disease.

19

u/WalnutRoasted 1d ago

Unfortunately +5 PCa cells tend to be aggressive and may be at the edge of the prostate or may have microspread outside the prostate / pelvis.

While you may “want to get it out”, many with that 4+5 pattern have recurrence within a year or two and end up needing salvage radiation after having endured the ST and LT effects of major surgery on an organ surrounded by many important nerves.

Be sure you talk to a radiation oncologist at a major clinic and do lots of reading / research on the options.

2

u/mtelesha 1d ago

I almost got mine remove Gleason Score of 8. Ended up I had two lymph nodes show some glowing in the pet scan.

If I did it I would have had likely had to wear a diaper the rest of my life due to radiation treatment stoping my healing.

8

u/Fun-Cake5739 1d ago

Sorry to have you join the club. Others will share great resources to help you choose the path that works for you. Consoder reading materials for pcf.org

I had RALP at 58 with Gleason 8.I chose this path to get everything out of my body while it's contained. 2 years later, no spread, no leakage, no detectable PSA, but no erections. Just started Bimix shots with some degree of success but still dialing in the right dose.

It's a complicated choice and journey ahead. Nobody, including doctors, will tell you what to do or imply there's only one option.

I'm 100% pleased I chose RALP.

8

u/Bulldog4015 1d ago

I truly appreciate each and every single response. I am now more educated by these replies that I need to consider radiation treatments as an option and not just focus only on surgery. I am lucky to be at an nci-designated cancer center and prostate cancer center of excellence. I will make sure to consult with a surgeon as well as a radiation and medical oncologist as recommended here. I am so glad to have found this group!

3

u/Santorini64 22h ago

As someone with Gleason 9 myself, I recommend you be very aggressive about treatment. The latest approved treatments tend to take a triplet approach for Gleason 9 and 10 disease. You have to assume it has already spread beyond the prostate and treat it systemically. Old fashioned sequential treatment just isn’t sufficient for very high risk disease.

1

u/TriviaNation1 21h ago

Yes, I’m 51. I was Gleason 9 stage 3C no spread I chose 12 months ADT 25ERBT and brachytherapy. I’m in month 10 of adt. Everything is going as planned. I’m reacting favorable to therapy. Protocol w 9 isn’t RALP anymore…

7

u/Soggy-Raspberry-1524 1d ago edited 1d ago

I had an 8 (4+4) Grade of 4. I was also told it was confined to the prostate. ADT and radiation of the prostate with a low dose to the lymph nodes ("out of caution"). 13 months after being on ADT, PSA started rising again, but a PET scan showed nothing. Doc said almost always, if the PSA rises again, it's spread beyond the prostate and is likely microscopic at this point. Back on ADT, so that's not fun, but at least the cancer is still responding to it. I really dislike that docs say it's 'confined to the prostate' when they can't know, especially if it's a Gleason of 7 or above. I had my expectations that my treatment would cure it because it 'hadn't spread'. After the fact, realizing where I was, I was super depressed. My expectations were smashed.

If it spreads, it's not a death sentence by any means, but emphasize to your doc that you want to know the facts so you can better prepare mentally.

Edit: added lymph note comment.

6

u/ThickGur5353 1d ago

I would think a psma PET scan would be desirable. This test is pretty sensitive to prostate cancer almost anywhere in your body.

7

u/sundaygolfer269 1d ago

I hope we can encourage you to go to a Center of Excellence or a major cancer center that specializes in prostate cancer, especially with a Gleason 9 diagnosis. This is not something I would rush into treating without getting opinions from specialists who deal with high-risk prostate cancer every day.
You really, really need to take the time to meet with a medical oncologist and a radiation oncologist who specialize in prostate cancer, in addition to the surgeon. Ideally, your case should be reviewed by a multidisciplinary tumor board where the specialists look at your pathology, PSA history, imaging and overall health together before recommending treatment.
A PSMA PET scan is an important next step for staging high-risk prostate cancer. You need to know whether the cancer appears confined to the prostate, has reached nearby lymph nodes, or has spread elsewhere before making a treatment decision.
I completely understand the desire to “get the damn cancer out.” It sounds logical: remove the prostate and remove the cancer. Unfortunately, prostate cancer is a microscopic disease. The surgeon can remove what the scalpel can reach, but the scalpel cannot stop microscopic prostate cancer cells that may have already slipped past it. That is why some high-risk patients who have surgery later find themselves needing salvage radiation and/or hormone therapy.
With Gleason 9, take the time to understand all your options before choosing one. Talk to the surgeon, but also talk to the radiation oncologist and medical oncologist. Ask each of them what they would recommend and why. You want a treatment plan based on your particular cancer, not simply the specialty of the doctor you happened to see first.
Spend some time at PCRI.org. Put together your PSA history, Gleason score, biopsy results, MRI and PSMA PET results when you have them. Learn where your cancer fits and make a written list of questions to take to your doctors.
And please do not take surgery lightly. A radical prostatectomy is major surgery. You may be looking at a 3–4 hour operation, a hospital stay, a Foley catheter afterward, possibly drains, abdominal discomfort from the gas used during robotic surgery, and the risks of urinary leakage/incontinence and sexual side effects.
Then imagine going through all of that only to learn six months or a year later that your PSA is rising and microscopic cancer cells apparently did slip past the scalpel. Now your doctors may be talking about salvage radiation and possibly hormone therapy anyway.
That doesn’t mean surgery is the wrong choice. It means that with Gleason 9 disease, you should understand the possibility of needing additional treatment before choosing surgery. Don’t make the decision simply because “I want the cancer out.” Make it after you have heard from the surgeon, radiation oncologist, medical oncologist and, preferably, a multidisciplinary tumor board.
You don’t get extra points for making this decision quickly. With Gleason 9, you want to make the right decision with the best information and the right team.
Best of Luck

12

u/PotentialStart2661 1d ago

I know that sounds good, complete removal of the cancer. But radiation is a complete killing of the cancer, the same thing. The question you need to consider is what is your chance of recurrence after removing the prostate? With Gleason 9 and many cores having cancer you have likely already had microscopic cancer outside the prostate that the MRI or Pet Scan cannot pick up. Which means you will end up doing radiation as salvage which is two treatments instead of one. You need a PSMA Pet scan before you go any further. But at this stage you will likely need radiation and ADT not surgery. Please discuss these facts with your doctor and meet both a surgeon and a radiologist both and ask about recurrence.

7

u/JMcIntosh1650 1d ago

That's a natural response. The problem is knowing whether or not you can really remove the malignant cells. MRIs, PSMA-PET scans, and all the other available tools have limitations, so "no signs of spreading" really means "no detectable spread with these tools", not no spread. My nonexpert impression is that for PC that is apparently contained to the prostate, the more indicators of elevated risk that you have, the more likely recurrence after prostatectomy is, presumably due to not having got them all.

When I was diagnosed last summer, my biopsy found 3 of 9 cores positive with one scored as Gleason 4+5 and the others as 3+4. I had no signs of spread but some adverse genetics and family history. Based on my diagnostic information, the MSK predictive nomogram gave me worse than even odds (65-75%?) of biochemical recurrence within 5 years. I chose surgery over radiation+ADT only because I had very strong reasons to avoid ADT. That was a big gamble, one I probably wouldn't recommend to most men with Gleason 9, and definitely not assuming there is no chance that the cancer has spread in a way that can't be seen yet..

Make sure to have a frank, realistic conversation with your doctors about these uncertainties. Whatever you choose, good luck! In my case, so far, so good at 1 year.

7

u/HeadMelon 1d ago

Sorry you’re in the club, nothing we hate more than adding new members. But we’ve got you brother. You’ll get thru this!

Please put your numbers in the MSK nomogram and check the likelihood of recurrence after RALP. If it’s high, skip the punishing surgical side effects and go straight to HDR brachy boost + EBRT/VMAT + ADT.

7

u/sundaygolfer269 1d ago

Back in the 1980s, my friend’s father ran the natural gas and propane service for a small town. The entire company was basically three people him, his wife, and a plumber so being out of work for weeks after open prostate surgery simply wasn’t an option.
He went to Duke University for a second opinion and was offered brachytherapy instead. He had the procedure, was back to work quickly, and today he is in his late 80s or early 90s and still kicking.

2

u/sundaygolfer269 1d ago

MSK nomogram link https://www.mskcc.org/nomograms/prostate?utm_source=chatgpt.com

4

u/conCABlanco 1d ago

Hi, colega, la RM, es buena para la biopsia, mejor para tomar el camino, un PET PSMA, pide a tu urólogo o oncólogo que te remitan, y luego toma tu desicion, fuerza y voluntad

4

u/OkCrew8849 1d ago edited 1d ago

As others have noted, surgery simply does not line up well against high risk (Gleason 8-10) prostate cancer.

As you move along in the process and speak to your oncologist it'll become clearer and clearer. The good news is that there are more effective treatments available. (And you will avoid the side effects of the major surgery to boot.)

7

u/BeerStop 1d ago

Radiation will do the same,consult a radiation oncologist as well so you understand all options, many folks wind up with salvage radiation after having ralp plus a treatment of adt. Be sure to have your testosterone levels checked before hand so you know your levels.

3

u/Ok-Priority-7303 1d ago

I know this is upsetting but making treatment decisions needs be based on additional data.

You will/should be scheduled for a PSMA PET scan to check for spreading beyond the prostate. While I get wanting to opt for surgery this test is essential to avoid regrets. An MRI is not accurate enough.

The doctor should should also get a Decipher score test on the biopsy specimens - this assigns another score; related to the agreesivenness of the cancer.

Just an observation, since I'm not a doctor - I had two biopsies, never less than 12 samples.

4

u/Race-Easy-Adventure 1d ago

Get one or two second consults.

Docs have biases; surgeons (and urologists who have all done surgery) believe surgery is the best intervention. Radiologists believe that irradiating the prostate is the best intervention. Probably the only doc who might be relatively unbiased is the medical oncologist who does not do surgery or radiation, and so does not have a horse in the race.

Check out this video from PCRI (Prostate Cancer Research Institute) from the last week or two, about the biases docs bring to PCa interventions:

https://youtu.be/uNyz9jELqKk

1

u/pescarojo 1d ago

"Docs have biases; surgeons (and urologists who have all done surgery) believe surgery is the best intervention. Radiologists believe that irradiating the prostate is the best intervention."

The radiologist I spoke to said that surgery was my best bet. I think the risk of taking that blanket generalization (that surgeons prefer surgery and radiologists prefer radiation) is that people will tend to discount the recommendations as just bias.

1

u/OkCrew8849 1d ago edited 23h ago

“Docs have biases; surgeons (and urologists who have all done surgery) believe surgery is the best intervention. Radiologists believe that irradiating the prostate is the best intervention.”

I don't think many surgeons (and urologists who have done surgery) would recommend monotherapy surgery for this particular situation so you may want to revise that generalization.

2

u/Specialist-Map-896 1d ago

Sorry you have joined our club. Those high grades indicate that no matter what your course of treatment is going to be you want to get it going asap. They will want to get a PSMA next to see if there is any spread to your system. However in the meantime that shouldn't stop you from seeking out professional opinions for treatment. I saw 2 different surgeons and a radiologist for my case, 11/12 cores positive with several 3+4 scores. One of the surgeons here was local in DFW but I went to MD Anderson in Houston for the other opinions. They all basically said it was a 50/50 call but getting the detailed plans for treatment helped me make my decision. If you go the RALP route, (which is what I did) take a look into getting a single port as opposed to the regular multi-port procedure.

Agreed with other comments about the particulars of your case, the scores etc may dictate one or another course of treatment. Also factors like age, health etc may dictate as well. I was 61 and in good health when I had my RALP a little over a year ago.

I wish you the very best of luck. Hang in there, technology and treatment give you very strong odds.

2

u/Busy-Tonight-6058 1d ago

Sorry you have joined our club. You should know there is a cohort of posters here dedicated to saving you from “brutal” prostatectomy surgery and will say just about anything to convince you to get radiation AND ADT, which is, frankly, hard to fathom. They can’t even give you a source to back up their claims.

I recommend you get multiple opinions from specialists who don’t have a financial incentive on what treatment you choose. Ask about “oncological control” and likelihood of “treatment escalation” post initial treatment.

Biochemical recurrence post surgery versus post radiation are NOT comparable. So, I suggest you ignore those comparisons. Good luck, you’ve got nothing but shitty choices on the menu. Do what you think is best once you feel educated, imo, and don’t look back.

2

u/GrayMajik 22h ago

Sorry for your diagnosis! I just had a RALP and PLND a couple of weeks ago. I only had Gleason 7 - 3+4, but my Decipher was high - .75. I had a bladder obstruction and thus opted for surgery over radiation. I would have considered radiation if it were not for that. For me the waiting in between appointments to find results and developing a plan were very stressful. I wish you well as your treatment plan develops. I felt less stress having a plan in place.

2

u/Weezie1214 13h ago

My husband was too a Gleason 9 with extra capsular extension. His PSMA Pet scan was clear with no metastasis. He had RALP in April of this year after a multi disciplinary team meeting at a Center of Excellence ( Johns Hopkins) His margins were negative ( surgeon sent samples to be tested while performing the surgery) and his lymph nodes were negative as well. His two post op PSAs are undetectable. He is not incontinent and does not regret having RALP. He goes every 3 months for PSA.

1

u/Bulldog4015 11h ago

That is great news!

1

u/IndyOpenMinded 1d ago

I am a Gleason 9 too. Sorry you have joined our club. I had RALP at a Center of Excellence and I don’t regret it. I feel some of these posts are with good intent but are too one sided. Having said that I also recommend you consult with a radiation oncologist at a COE plus a a COE urologist. I did that at two different COEs and all four doctors recommended RALP. Not everyone will get that but was in my case.

3

u/OkCrew8849 23h ago edited 23h ago

I think the concern for a number of posters is the considerable likelhood of reocurrrence following RALP with a high risk Gleason 9. And the logic of multi-modality radiation plus ADT (versus surgery plus radiation plus ADT) for high risk prostate cancer can be compelling.

Question Newly diagnosed

You are about to leave Redlib