Appreciate any help / feedback on if we should get 2nd opinion.
The urologist would not tell us the exact stage, and avoided saying that it has spread or stage IV. He said the radiologist would be the one to stage it, but he suggested it was T2, N0, M0. I am concerned that Gleason 9 (4 + 5) and with the comments below from MRI suggest it has most likely spread (seminal vesicle and / or 2 lymph nodes) and is actually Stage IV ?
I asked about doing PET SCAN and he said no, but did suggest bone scan to be done.
All info below is from our local urologist :
Age: 72
Biopsy and MRI done in last 3 weeks.
Gleason score: 9 (4 + 5)
MRI:
PI RADS 5, Lesion #1 mid gland involving most of right side, Size: 23 x 17 mm
Seminal Vesicle: Tumor above appears to invade into the right seminal vesicle
Lymph nodes:2 left internal iliac lymph nodes not enlarged but have irregular morphology, and appear different than other lymph nodes in the pelvis.
Alos a prominent mesorectal lymph node on the right.
Bones: no suspicious lesions
BIOPSY: 90-100% of samples on right lobe / side, only 1 cancerous spot on left side.
PSA: 3.7 last year - 4.2 most recent
TREATMENT SUGGESTED:
Casodex - start daily pill this week
Lupron - get 1st shot in 1 month, will get every 3-4 months
Meet with Radiation oncologist in 2-3 weeks, most likely to 5x times week for 1 or 2 months.
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When you are diagnosed with a Gleason 9 this usually means the cancer has already spread. However, the MRI is not sufficient to diagnose the spread therefore it mentions "appear". If the bone scan shows bone mets you are Stage 4. If you have affected lymph nodes in the pelvis, this would be N1. Outside the pelvis it would be M1a.
Your last line indicates that radiation of the prostate is considered.
" usually means the cancer has already spread. " that is simply not true. It means the PCa is more likely to metastasize. If already metastasized at diagnosis, 100% guaranteed to spread even more!!! But same can be said for any Gleason that has metastasized.
You are correct. Gleason 9 is very aggressive however, I had a 9 with no spread other than the seminal vesicles. T3bN0M0 my MO placed it at T4N0M0. They tell me that they are working for a cure.
No. I was first started on bicalutamide and Lupron prior to robotic surgery. The surgery was aborted as the prostate was too adherent to the seminal vesicles and rectum. I had extracapsular extension and neoplastic invasion of both seminal vesicles. Gleason was 4+5=9. I received 45 sessions of IMRT to prostate and pelvic. I will continue 2 years of Lupron + 2 years of abiraterone 1000mg & prednisone.
Seminal vesicles pose no problem, they can be taken out. Rectum is another, more dangerous, story. I am GS 9 and pT3b N0 R0. If interested check my bio .
Yes, getting a second opinion at this point is always a good idea. Different people have different perspectives and at minimum you will be more confident in the path you are taking.
Your diagnosis is very close to mine, except Dr Epstein at John Hopkins gave me a G-10, while the local pathologists (2 of them) were happy enough giving me G-9.
What's been proposed to you is basically the treatment I had. I consulted with 5 doctors before deciding on the treatment, 2 urologists, two radiation oncologists and one medical oncologist. ALL of them agreed this was a suitable treatment for my disease, and several thought the treatment would be curative.
My suggestion is search out other experts in the field and schedule a consultation. Try finding doctors who other doctors would go to - most often found at teaching universities like John Hopkins (MD/Maryland/WDC area), NYU, Columbia/Presbyterian (NY area), UCLA in LA, Jefferson in PA.. the hospitals that the best doctors tend to be from. I'm sure other people will have additional recommendations. Your local doctor may be a wonderful one, or he could have graduated at the bottom of the class - you have to experience him to really find out.
FWIW - G9 does NOT mean the cancer has spread. It does mean it has a greater propensity for spread, so treatment shouldn't be delayed. Someone with a G7 can take months determining what treatment to start. G9 deserves prompt attention, you want to knock it down before it's out of the prostate area.
Given what you described I would expect your proposed treatment to be general radiation of the prostate area (bed) and then specifically targeting the tumor(s) in your prostate with a high dose "boost" this will be accompanied by adjunctive ADT (hormone therapy). The ADT starts now (what the Casodex is doing) and continues for a total of 18 or more months. This is the current treatment regime for radiation treatment for high-risk cancer, and it has a record of good outcomes. Tall_Allen will possibly fill you in on adding seed radiation (brachy) to the treatment. With earlier treatments this did present an advantage over just beam radiation, but with the latest "boost" treatments that advantage isn't as pronounced now. Radiation treatments have changed rapidly over the past decade, and 10 year results of trials typically are based on therapy that's no longer given.
Good luck, don't panic! (Hitchhikers Guide to the Galaxy)
Just matter of interest what are beam radiation and seed radiation? Not that I need either at present. Just trying to navigate through all the different terminology. Thanks.🙂
ImageGuidedRadationTherapy (IGRT) IntensityModulatedRadiationTherapy (IMRT), combinations of those, and Proton Radiation Therapy - are all considered "beam" radiation since they're done with a beam of radiation. Seed radiation is Brachytherapy, there are permanent radioactive seeds implanted, and there is a type with temporary insertion of radioactive sources that expose tissue and are then removed.
Yes, but TA has provided several studies showing that delaying treatment for even certain high risk men has little association with worse results.....you can find those studies on his blog I think......of course , , for such studies, it would be important to know for which subgroups within the high risk group were results the same/similar,,,and for which subgroups waiting resulted in worse results? For instance, finding so many cancerous cores on one side, and possible SV invasion would portend worse results for those who wait?
Neither Gleason 9, the MRI showing stage T3b, or the irregularly shaped lymph nodes indicate the cancer has spread outside the prostate. You require further diagnosis before a treatment plan can be devised. You have to take it one step at a time.
(1) The first step is to get a bone scan/CT.
(2) If the bone scan/CT is negative, the next step is to get a PSMA PET/CT. If the PSMA PET/CT is positive, you would go ahead with radiation to your prostate ('debulking").
(3) If the bone scan/CT is positive, and there are fewer than 4 distant metastases , you would go ahead with radiation to your prostate ('debulking"), and consider triplet therapy, or the PSMAddition clinical trial.
(4) If the bone scan/CT is positive and there are more than 4 distant metastases, you should consider triplet therapy or the PSMAddition clinical trial.
(5) If both the bone scan/CT and the PET/CT are negative (or if only pelvic lymph nodes are positive), you can proceed with curative whole pelvic radiation with adjuvant intensified hormone therapy.
I hope that's not too confusing. Please write after you get your scan(s), and I can explain more.
PSMA PET is SOC and approved by Medicare for high risk diagnosis......refer your urologist to NCCN guidelines and Medicare approved coverages. Other private insurance should now also approve...perhaps your urologist is behind the times. Eg, I was not referred initially for PSMA PET, but both urologist and RO immediately agreed when I asked.....I would think with some embarrassment???????? Sigh !!!!!!!!!!!!
Not sure whether MO or M1. Also went from PIRAD 3 to G-10. ADT and 2sd Gen agent got PSA down to <0.1 from triple digit.
All these MO, M1. PIRADS, Gs are very confusing. As long as your MD is confident, and he/she gets it right, and they tell say you are disease free, I would just enjoy life and not worry too much or spend too much time on all these alphabets. 😊
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Received results today from Axumin scan performed last Thursday. They plan to start me on ADT with radiation in 8 weeks. Thoughts welcome.
new and looking for resources Stage 4 metastatic. Gleason 9
Does ADT work for Gleason 9?
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To Do Radiation or Not do Radiation?
