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Newly diagnosed and awaiting referral at Mayo, any MD recommendations

Posted by earthly8007 @earthly8007, Jul 18 6:04pm

I just had a biopsy of a 1 cm tumor in bladder with path showing high grade papillary, noninvasive. The Mayo Urologist I saw initially is not a cancer specialist and will refer me to a specialist for follow up care and treatment. Can anyone who has care at Mayo recommend which Urologist they see and would recommend. Mayo is a 3 and ½ hour drive from home and my other option is to have care locally at a well known cancer research hospital. I felt much more confident after my first Mayo visit and feel it would be worth continuing there if I have a good physician.

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jr1466 | @jr1466 | Jul 19 6:27am

Paras Shah is my urological oncologist and has been excellent.

Mayo is a six hour drive for me but every mile (18 trips and counting) has been worth it.

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marion709 | @marion709 | Jul 19 8:50am
In reply to @jr1466 "Paras Shah is my urological oncologist and has been excellent. Mayo is a six hour drive..." + (show)
Profile picture for jr1466 @jr1466

Paras Shah is my urological oncologist and has been excellent.

Mayo is a six hour drive for me but every mile (18 trips and counting) has been worth it.

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@jr1466
I agree that Paras Shah is excellent. I am NED after 6.5 years post surgery.

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bbereskin | @bbereskin | Jul 19 9:25am

Dr. Jeffrey Karnes is excellent.

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earthly8007 | @earthly8007 | Jul 19 8:53pm

Thank you so much for the recommendations. Hopefully I have input in who they refer me to and can make a specific request.

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jaxfl | @jaxfl | Jul 21 12:24pm

The main Mayo in Rochester, MN or in AZ or FL? I know an excellent team in JAX, FL.

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deb2024 | @deb2024 | Jul 22 8:16am

I had similar diagnosis at 69 years old and went to Mayo for treatments. It was a 4 hour drive and we made over 30 trips in 2 years. I’m now NED and still go for checkups. I was on gem/doc treatment. Travel was hard but worth it! Praying for you as you make your decision.

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earthly8007 | @earthly8007 | Jul 24 9:54am

I feel good with my decision to stay at Mayo at Rochester and am so happy you are NED @deb2024. At least we are retired and my husband doesn’t mind the drive. My surgeon who did the first biopsy called me and will assume my cancer care as he does a high volume of TURBT cases, hence sees a lot of the early NMIBC patients. I was concerned they weren’t referring me to one of the “Oncology” Urologists, but he said those docs tend to see people with more invasive or non responsive cancers. He said I could start with an Oncology Urologist if I wanted that, but I decided to stay with him as he seems very capable, patient and communicated well with me, so important. My next step is a TURBT at the end of August with removal of a larger section that will include some muscle and part of the nearby ureter opening so I can be restaged. I’ll have a stent for 4 weeks afterwards (ugh). I hope my stage remains noninvasive as it is high grade as well. It sounded like I’ll get BCG, but gem may be an option depending on my final stage. This support site is invaluable and I’ll keep reading other posts regarding treatment choices and how to deal with stent pain. Thank you all for the helpful comments.

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deb2024 | @deb2024 | Jul 24 8:40pm
In reply to @earthly8007 "I feel good with my decision to stay at Mayo at Rochester and am so happy..." + (show)
Profile picture for earthly8007 @earthly8007

I feel good with my decision to stay at Mayo at Rochester and am so happy you are NED @deb2024. At least we are retired and my husband doesn’t mind the drive. My surgeon who did the first biopsy called me and will assume my cancer care as he does a high volume of TURBT cases, hence sees a lot of the early NMIBC patients. I was concerned they weren’t referring me to one of the “Oncology” Urologists, but he said those docs tend to see people with more invasive or non responsive cancers. He said I could start with an Oncology Urologist if I wanted that, but I decided to stay with him as he seems very capable, patient and communicated well with me, so important. My next step is a TURBT at the end of August with removal of a larger section that will include some muscle and part of the nearby ureter opening so I can be restaged. I’ll have a stent for 4 weeks afterwards (ugh). I hope my stage remains noninvasive as it is high grade as well. It sounded like I’ll get BCG, but gem may be an option depending on my final stage. This support site is invaluable and I’ll keep reading other posts regarding treatment choices and how to deal with stent pain. Thank you all for the helpful comments.

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@earthly8007 You will have great care at Mayo. It sounds like you have a wonderful doctor. I know you are facing a lot but take one day at a time. Don’t let it overwhelm you. I will be praying for you and please keep us updated.

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djr5 | @djr5 | Jul 25 6:41pm

Paras Shah is my treating oncologist at Mayo Clinic - Rochester, and it has definitely been worth the 12 hour round trips for me to receive care from him.

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