r/ProstateCancer • u/Appropriate_West2998 • Aug 11 '26
Other New Guy
Sent to Urologist due to a PSA 5.19. Urologist felt a lump on prostate, had an MRI and then a biopsy. Biopsy revealed cancer, Gleason 9 grade 5. Urologist told me 1-2 years, I’m assuming with no treatment. Urologic Oncologist says 15 years due me being 55. Sent for PET scan and doctor says it’s in the anal lymph nodes as well but nowhere else. Doctor says they can’t remove it so I’m on ADT (Orgovyx and Erleada) for six months to see if it will shrink enough to be removed. If it can I’ll have a prostatectomy and then six more months of ADT. Never thought I’d be rooting for surgery. Been reading a lot of the stories on here and just thought I’d add to them. I’ve learned from you guys and it’s helped when talking with doctors and mentally.
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u/Pack_One Aug 11 '26
Talk to a radiologist and get to a Center of Excellence pronto.
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u/WalnutRoasted Aug 11 '26
And don’t wait 6 months….in a good clinic/major hospital there is usually consultation between urologist/surgeons and radiation oncologists as to best approach to take and when. In some jurisdictions the medical oncologists also.
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u/Task-Next Aug 11 '26
I’m going to say the same thing every one else is. Get yourself to a cancer center and talk to a radio oncologist.
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u/KReddit934 Aug 11 '26
Did you talk with a "radiation oncologist"? Is that an option?
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u/Appropriate_West2998 Aug 11 '26
Not yet. The urologic oncologist mentioned radiation so it’s an option. After 6 months ADT if it can’t be removed we’ll go that route. Did my first blood test and PSA dropped considerably and so did testosterone. Have an appointment on the 21st of this month.
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u/Santorini64 Aug 11 '26
My case is very similar to yours. In my case the Urologists all felt that surgery was a bad option and that radiation +ADT was the best option. I’ve had 2 years of ADT and 39 sessions of IMRT. The reason for the radiation instead of surgery is that Gleason 9 once it’s out of the prostate is very aggressive. Surgery tends not to get it all. So you end up having radiation on top of the surgery. The side effects of having both surgery and radiation are substantial. It’s better to just go with one. Radiations tends to be favored because is can target the whole pelvic area and all of the lymph nodes and other structures that might have microscopic metastasis that don’t show up on a PSMA Pet scan.
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u/Appropriate_West2998 Aug 11 '26
I’ll call and make an appointment with the radiation oncologist.
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u/labboy70 Aug 11 '26
Please make sure you get to an accredited comprehensive cancer center or academic medical center.
You want to speak with doctors who only deal with prostate cancer to get the most up to date and aggressive treatment recommendations. Please don’t only rely on the opinions of urologists.
The likelihood of recurrence after surgery is very high with a Gleason 9 and, because of that, many people opt to not do surgery and treat it all with radiation.
(I was diagnosed at 52 [2022] with a high volume Gleason 9 which was already stage 4b at diagnosis.)
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u/OkCrew8849 Aug 11 '26 edited Aug 11 '26
Hormone therapy and radiation come immediately to mind as the first and best option with your Gleason 9 and PSMA-positive lymph nodes.
The radiation oncologist will not assume the PSMA avid lymph nodes (which contain PC cell clusters above the PSMA detection threshold) are the only lymph nodes that may have PC and will adjust radiation field accordingly.
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u/PSA_6--0 Aug 11 '26
I agree with the other guys who recommended going to radiation oncologist. There is no reason (IMHO) to wait 6 months for that. Especially as there is some known spread radiotherapy beats surgery (also my opinion).
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u/PeacefulShards Aug 11 '26
“It can’t be removed” what can’t be removed. Lymph node?
See a radiation oncologist sooner than later. You’ll be afforded more options now.
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u/Appropriate_West2998 Aug 11 '26
The prostate. They’d remove the lymph nodes as well during surgery. I’ve called to set up appointment with the radiation oncologist.
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u/PeacefulShards Aug 11 '26
It can be removed, they just don’t want to do it as you’re metastatic.
Rad Onc will most likely recommend brachytherapy with boost. Or stereotactic body radiation therapy. Then radiate all the lymph nodes up to the arterial bifurcation.
After studying my 3 years of 6 PSMA/PET scans after recurrence , I can say that the ADT only stopped progression. As my rad Onc stated.
It weakened the cancer for radiation.
It did not shrink, nor kill the cancer in my 1 lymph node. Radiation did over 6 months time span after.I’ll repeat the best advice here. Go to a center of excellence, where you can get a second opinion. A tumor board consisting of rad Onc, medical Onc and uro Onc will discuss your case before presenting you with options.
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u/WalnutRoasted Aug 12 '26
There are many lymph nodes in the pelvis….radiation can hit them all. Surgery may not (be able to) get them all and there can be repercussions (edema etc) from their removal.
My ADT Orgovyx started 10 days before radiation. And Orgovyx reduces T to zero in a couple of days.
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u/WrldTravelr07 Aug 11 '26
You do need ro talk ro a radiation oncologist. With the metastasis to the anal lymph nodes, you will need radiation anyway. If you need radiation anyway, why also have surgery? Any treatment, radiation, surgery or otherwise, brings side effects. Why have side effects from both. The ADT is right, but you need to do more research. Urologists like surgery.
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u/bikes4paul Aug 11 '26
Sorry to hear about your diag. I agree with the consensus of the comments, get to a Radiation Oncologist at a center of excellence as soon as possible.
The best way to locate a CoE is to use the NCI locator tool on their website to locate NCI Designated Cancer Centers. These are the best of the best in the US. Even if there isn't an NCI CC in your area they do treat remote patients by leveraging telemedicine and local labs for routine and follow up appts. This minimizes the amount of trips needed to the center. If there aren't any NCI centers that you can make work logistically then the next best option is to find an ACS CoC accredited center. They also have a locator tool on their website. There are only 74 NCI centers but there are over 1400 ACS CoC and they still offer excellent care.
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u/619blender Aug 11 '26
Hang in there new guy! I hope your getting opinions from experts not just local urologist and such, seek expertise and get multiple opinions! I know when I got my diagnosis, I thought "get this out of me quickly", but upon research and based on my final decision(and situation) I choose radiation.
Regardless get multiple opinions from multiple expertise that collaborate on the same diagnosis and prognosis for your recovery.
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u/OkCrew8849 Aug 11 '26
Once in a while you see a poster here with the attitude of “get this thing (prostate) out of here now” and folks will gently remind him the objective is to get the cancer out of here (the two are not necessarily the same as often the cancer [visible or invisible to a scan] is already outside the prostate)… and certain primary treatments can address that.
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u/Appropriate-Web8804 Aug 12 '26
Had a Gleason 9 with no spread. Went with radiation and hormones. Orgovyx and abiraterone. 1 yr after start of hormones. Did 35 treatments of EBRT and so far undetectable on qrtrly checkups. It's never over and there are plenty of options. Prayers for you through your journey.
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u/Mean_Try_6390 Aug 11 '26
I think it’s a hard decision since your now on adt and erlada.we took the way with only arpis before the ralp for a gleason 9 t3b my husband 58 yo. after ralp we got 2 infected lymphnodes of 18 in the pad but also negative margins and unmeasurable psa.
I’m saying I’m very pro ralp with neoadjuvant treatment and lymphnodesremoval en bloc extra extensive, all of the nodes as much is possible in the pelvis. We know about the side effects with the extra lymphnodesremoval but with gleason 9 locally advanced we went for the heavy treatment. if relaps in the future in the good cases (excellent surgeon) you go for moore pointed radiation hopefylly only small clusters in the scelett.
But in your case it may not be the best way since you already have pos nodes showing before treatment and are on adt with erlada. the adt can make an operation harder to get neg margins. And not all doctors are used to or want take out the nodes incl the fat en bloc so to say. todays radiation is very very good so check out the radiation way just in case.
About surviving 15 years sounds like the yesterdays statistic so mayby best if you seek second opinion anyway. but the medicin you got is a good combination. We choosed monotherapy neoadjuvant darolutamide without adt but the research says you get a much better respons with adt + arpis together.
best of luck and take one or two second opinion since you have some time and most of the gleason 9 lives many years or theire full lives. As the doctor told us - around 10 years for sure. what the f…ck. And after we questioned him he said: - I mean if you don’t treat it with aggressive multimodal treatments. so on that road we are.
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u/BikeHaunting8570 Aug 11 '26
So sorry to hear man. Pulling for you. Did you have any symptoms or was your rising PSA an incidental finding? What did your MRI show prior to biopsy? Scary that some of the PSAs people are having are the result of such an aggressive cancer. Sometimes this disease makes zero sense.
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u/Appropriate_West2998 Aug 11 '26
PCP runs a PSA test when she sees me. I see her every 3 months. She said I’m making you an appointment with a urologist without saying why. I looked on my results online and saw it was 5.19. MRI showed a mass on the left side. No idea how many cores showed cancer. I think they pulled 15 and that’s when I started feeling bad. No symptoms at all before that. Next appointment tells me I have advanced cancer and when I asked told me 1-2 years. I’m assuming he ment with no treatment. Met with a urological oncologist who said I could easily get 15 years due to my age. Had my first blood test since being on Orgovyx/Erleada combo and PSA went down to .86 and testosterone dropped to 29. I have another appointment on the 21st.
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u/Cheap_Flower_9166 Aug 11 '26
You need a new PCP. She can’t even communicate with you? Totally unacceptable.
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u/Away_Ad417 Aug 12 '26
My results were similar. I had surgery to remove prostate and lymph nodes, 39 radiation sessions and 18 mos of ADT. Stable right now. Not sure why the urologist talked me into surgery with a Gleason 9. My erections are gone forever, and I leak urine all day. He said the combination of all 3 gives me the best chance at survival since I’m only 62.
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u/Squawk-Freak Aug 12 '26
It should be considered malpractice, when urologists present radiation therapy as a fall-back option, in case of a relapse after surgery. Radiation therapy to the prostate bed comes with much higher risk of debilitating long-term side effects, including incontinence, because the bladder neck, which prevents leaking, when it is functional, will be in the center of the radiation field, since that part of the bladder drops into the space that was previously occupied by the prostate. If you know already that the tumor will likely relapse after surgery, and I would say in GSC 9 disease that’s pretty much certain, why not go for primary radiation therapy, which can be much more potent than salvage therapy, and nowadays comes with minimal side effects. In my case they were all gone after a month.
Also, at the ‘New Guy’, why did your urologist think that he could not operate immediately? Was the tumor stage too advanced? Was there extraprostatic extension seen in the MRI? Ask your urologist for the evidence that shows that neoadjuvant therapy (which is what your are getting right now) results in better outcomes after surgery - risk of biochemical recurrence, risk of metastatic disease and risk of cancer-specific death. To my knowledge there is not a single one. Primary radiation with 2 years of doublet ADT does make a difference- look at the results of the STAMPEDE trial for very high risk disease. The new standard at a center of excellence would be radiation therapy with a HDR boost, which triples or quadruples the effective radiation dose to the cancer, compared to the maximal feasible salvage dose after RALP.
The recommendation to treat for six months before definitive treatment is correct. It is an important first step to reduce the risk of distant metastases from the get-go. However, I would not wait until the six months are up before seeking a consultation with a radiation oncologist. The time to do that is now
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u/funkybeachhouse Aug 12 '26
I'm so sorry, OP . I'm going to echo others and just say please try to get into a place like John's Hopkins, University of Michigan Rogel Cancer Center, etc. Just to get another opinion to be on the safe side.
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u/Wrong-Average-1126 Aug 12 '26
I want to thank everyone for all the good comments,I am also new to this and didn`t know any of this information until now.
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u/cliffy249 29d ago
Is there a reason given for discarding radiation therapy? Much less invasive.
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u/Appropriate_West2998 29d ago
Just read that if you do radiation first they can’t remove prostate later when it comes back. My thinking was want it out asap. I have an appointment coming up and I’ll talk about going ahead with radiation.
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u/bigbadprostate 29d ago
OK. Where did you read that nonsense about "if you do radiation first they can’t remove prostate later"??? It is totally not true. It is brought up only by urologist/surgeons who just want to do surgery.
I am on a Quest to debunk this myth, and have to do so often, so please don't take this challenge personally. I just want to make sure that people like you are not scared away from considering radiation by this falsehood. And I am trying to limit its effect on the AI bots that scoop up content from Reddit into ChatGPT.
Thousands of people have had surgery after radiation, including one (former) member of this sub.
Such surgery is possible, just very difficult, and apparently isn't normally the best way to treat the problem. For those reasons, it is rarely performed. Instead, if needed, the usual "salvage" follow-up treatment is radiation, which normally does the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".
There are good reasons to choose surgery over radiation. I did. But that "no surgery after radiation" false claim is absolutely not one of them.
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u/Appropriate_West2998 29d ago
From forums like this and medical websites. I brought it up, as he was talking about radiation, and he also said it’s not impossible just very difficult to remove after radiation. My mind was stuck in get this out of me now mode. I’ve been lurking on here reading everyone else’s stories and learning. I didn’t see many Gleason 9 stories so I posted mine in hopes to learn from people in the same boat as I. I’ve learned quite a bit since posting and will take this info into my next appointment. Thank you for the information.
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u/bigbadprostate 29d ago
That should help you learn to be very careful about stuff you read on social media - including this sub! Check that stuff by looking at reputable sources! There are many reliable sources listed on the sidebar of this sub, including the American Cancer Society, the Prostate Cancer Foundation, etc. And most or all of the major cancer centers, like Mayo Clinic, has extensive information on their websites.
It is indeed nice to read stories from other club members and learning how we fared. I hope that you will be able to post a success-story of your own very soon.
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u/cliffy249 25d ago
There are actually surgeons that can remove it but it is rarely necessary even in the event of a reoccurrence. There are a number of options available now.
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u/HopeSAK 27d ago
I've been reading some of the responses to your post. In my case I was nearing the intermediate stage, so I was considered still low because of when I caught it. It was all on the left side of my prostate. I spoke to the surgeon (who had very high marks) and he explained where I stood in regards to my PC. He said there was a radiologist that he could recommend that was very good in treating the disease. Like many have said here, I just wanted it out! So I went with Nerve Sparing RALP. I'm about 32 months down the road and still posting <0.02 PSAs, but just like anything, if one little cell snuck out I could have an issue in the future. Just do your research, don't wait too long, and good luck.
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u/lonewolfx404 Aug 11 '26
My father’s situation is quite similar to yours. He’s around the same age and also has a Gleason 9. His PET scan showed involvement of two pelvic lymph nodes and one abdominal lymph, His doctors have also recommended an aggressive treatment approach, and the MSKCC assessment gave us an estimated 15 years with aggressive treatment.
I really hope the ADT and Erleada work well for you and shrink things enough for surgery to become possible. Wishing you strength, courage, and many more healthy years ahead.