Oncology Care Rejection

@jeffmarc Completely agree with your assessment and am pursuing further to get to the bottom of it. I, unfortunately, am on Lupron for at least 3 more months and am having sever side effects of Dizziness and Nausea. Can not 100% say it is the Lupron but I have received a lot of additional tests and scans that point to it. Even trying PT now. I talked to my Urologist and will be getting on Orgovyx in July. Just reading about the decipher test it is typically for patients with localized cancer I have it in at least 4 locations currently. Received Radiation also at Mayo which makes this whole thing very confusing.

@jeffmarc I live in Minnesota. Gleason 9. PSA 4.39. No mention regarding long term remission or what that even is metastasized to 4 locations including bone. On Lupron shot and DAROLUTAMIDE. Have not heard of a decipher test.

@greg2026 So your cancer qualifies as oligometastatic (good), and you're getting doublet therapy (better).

Have they discussed the possibility of metastasis-directed therapy (MDT) instead of chemo, since you have fewer than 5 metastases? Obviously, I don't know your exact situation (and I'm not a medical professional anyway).

Treatments like doublet therapy, triplet therapy, and MDT used to be cutting edge 4–5 years ago, but you should be able to get them at any major cancer facility that's a research centre and/or affiliated with a medical school these days — at least, I'd hope so.

The other increasingly-common approach these days for oligometastatic prostate cancer is to radiate your prostate (aka the "mothership"), even though the cancer has already spread. It's not indicated if there are >5 metastases, however. Another question to ask your medical team.

Best of luck!

@northoftheborder less than 5 have already received 20 consecutive radiation therapy at Mayo. Even my radiation oncologist thinks the reaction of medical Oncology is strange. She continues to check on me without Medical Oncologies assistance.

@greg2026 I agree with Jeff that this doesn't make sense. If you were a Mayo oncology patient, the retirement of the doctor you had been seeing shouldn't have required you to seek oncologist treatment elsewhere. I hope that Colleen will post the contact information for the Mayo department that can help you register your unhappiness and get to the bottom of it. I am very sorry that you are going through this.

@greg2026 Again, no one here can diagnose you or recommend treatment, but I think this thread is generating good questions to keep asking your team (wherever you end up getting treatment).

Was the radiation to your prostate? Have they explained why they're recommending chemo instead of radiation to the individual metastases? (Maybe they're too close to each-other?)

@lag Absolutely - message Colleen!

@northoftheborder 1-local oncologist said Chemo and no other option 2-Second (Mayo) and third opinion said that is Chemo is not standard of care Radiation + ADT (Hormone Therapy) is standard of care you want to keep Chemo in your back pocket just in case you need it at a later time.

I went with Mayo and have had 20 days of radiation treatments (Prostate, Lymph nodes, Bladder, 2 bone Metastasis). Sense Medical Oncologist has retired and suggested I go back to the original local oncologist my case was "too easy" for Mayo Oncology team (WHAT? very degrading). Stated I went with Mayo because of the original recommendation no way would I reengage with my local oncologist who did not lay out the options.

@heavyphil New to the group Colleen who?