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Oncology Care Rejection
I am very confused. I was diagnosed with High Grade Stage 4 Prostate in November. My local oncologist did not give me information or a choice on treatment and said Chemo must be scheduled. Second consult with Mayo reviled that is not standard of care radiation and hormone treatment is. Received radiation treatment in January, on hormone drugs, current Oncologist retires today and Oncology nurses and Dr. say they will not treat me as a patient unless something else changes go find a local oncologist having one at Mayo is not recommended for long term Oncology management and limits of care safely at a distance (5 hour drive for me)? What originally they stated they can see me and care for me at distance without issue? I will not see local oncology they did not provide options or correct standard of care. Does Mayo not see patients around the world? I am very very saddened and confused.
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I am a bit confused by your post. Are you saying that Mayo refuses to see you because you are not local? This has not been our experience at Mayo. Mayo has patients near and far, worldwide. There is no reason you can't see providers at Mayo based only on your distance away.. They do advise care in the local community for certain issues, but will see patients in Rochester for issues that can't be handled locally. For example, my husband has been a prostate cancer patient of Dr. Kwon in Urology at Mayo Rochester since 2011. It is a ten to eleven hour drive for us, and we go there on average every three months for scans and labs and to see Dr. Kwon. When radiation treatment is needed, we drive to Mayo more often. However, it is good to have an oncologist closer to home; my husband has a genitourinary medical oncologist an hour away in Indianapolis. Maybe you can find an oncologist outside the group which dropped you, but relatively close to your home. You say you had a consult with Mayo. Can you contact that person and/or department again and ask if they are willing to see you for some of your care?
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2 ReactionsWhat city do you live in? I may have been able to give you information on a doctor in your local area.
Is Mayo in a different state? That could be a problem.
It could be you have a long-term remission, Get PSA test at least every three months.
Did they put you on any drugs? What was your Gleason score? What was your PSA when you were diagnosed?
Did you get a decipher test to see how likely there is to be a reoccurrence?
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.
@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.
@lag Was being treated by the Mayo Oncologist until his retirement today. I needed my Meds changed they said seek locally. I said I would like to be seen at Mayo for Oncology they said no go local basically. There are reasons I chose to go to Mayo in the first place not locally. I am only 5 hours away upper Minnesota.
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1 Reaction@jeffmarc 30 Miles north of Brainerd
@greg2026 I am sorry to hear that your Mayo medical oncologist retired and you were told to seek local oncology care instead of continuing in the Mayo department. I do know Mayo is recommending local care more now because they have gotten much too busy in certain departments. Having an oncologist closer to home is good, but I don't blame you for feeling bad about what happened. I hope that Jeff and others will have oncologist recommendations relatively close to Brainerd that you can be comfortable with. If nothing else, call a cancer center in the Twin Cities and see if they have recommendations of medical oncologists relatively close to Brainerd. Good luck and hang in there.
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3 Reactions@greg2026
Here is one more place you can go, Recommended by the National Cancer Institute
Masonic Cancer
Centerr
University of
Minnesota
Minneapolis,
Minnesota
Comprehensive
Cancer Cent
It is really hard to understand how Mayo at Rochester is unable to help you any further. The fact that your oncologist retired is irrelevant. You should try to contact Dr. Heath, she is the head of oncology and is a really great doctor to work with. I know a few people that are working with her and they really like her a lot. Something very fishy about what they’re telling you. You live in Minnesota and there’s no reason you shouldn’t be able to get treatment there.
The Mayo Clinic knows about the decipher test. They can arrange to have you get one.
You are on a good set of drugs, though you might want to ask about changing The Lupron shot for the Orgovyx Pill which you take once a day. When you stop taking your testosterone comes back much quicker. A lot of people say they get Fewer side effects from it. Speak to your doctor about this. How are they planning on you getting Lupron shots in the future? Something very fishy about this whole thing.
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4 Reactions@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.
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1 Reaction@greg2026
You’re right the decipher test may not make much difference. Between the Gleason, nine and the metastasis, the likelihood of reoccurrence is very high already.