Tumor found in the Ureter

1 month 1 week ago - 1 month 1 week ago #60753 by NelsJenn
Replied by NelsJenn on topic Tumor found in the Ureter
Dear Forum Members, Thanks for all the support and suggestions about the tumor that was discovered in my ureter. Everyone has be absolutely awesome with advice. Special thanks to ones who suggested a second opinion with a Medical Center with an exceptional track record with bladder and ureter cancer and thanks for educating me about UTUC and Gelmyto. 

I have looked up best hospitals with urology department for bladder cancer. These are the ones I came up with:

Mayo Clinic
Memorial Sloan Kettering Cancer Center
Johns Hopkins Hospital
Cleveland Clinic
New York-Presbyterian Hospital-Columbia and Cornell
University of Texas MD Anderson Cancer Center
UCSF Medical Center


Of course, the list goes on, but I stopped at UCSF Medical Center because this is where I am getting my treatments from for the last two years. I started my treatment with a local urologist, but transferred my care to UCSF because of their expertise, "state of the art" treatments. The UCSF approach has been impressive, and shocking when compared to my local care. Please note: I am not saying all local care sucks..... I just had an isolated and challenging experience with a local urologist. 

The idea of getting a second opinion is a smart one, I believe. QUESTIONS: Should I get a second opinion from another medical center or should I ask for another Urologist to review my results at UCSF? And out of the medical centers I listed above, does anyone (forum members) have recommendations of which medical center to go to? 

QUESTION: How do I go about telling my urologist I want a second opinion without insulting her? Should I have the expectation that my urologist should support me with getting a second opinion? I ask this because my first urologist practically kick me out of his office for wanting a second opinion. 

Any feedback would be appreciated. Best, Nelsjenn

Bladder Cancer - Non-Invasive 2019
High Grade - T1
2 TURBT - 2019
9 BCG Infusions - 2019
Ureter Tumor Discovered - 2021

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1 month 6 days ago #60754 by DougG
Replied by DougG on topic Tumor found in the Ureter
Nelsjenn,

It is tricky getting that second opinion.  Since you are using UCSF Medical Center and they are a top rated bladder cancer hospital and you feel good about them, I would ask your doctor if there is a particular doctor in their practice who is most experienced with cancer in the ureter.  My husband's bladder cancer went to his left kidney...not sure if it was in the ureter or not, but I know that the ureter and kidney both had to come out.  He was treated at Vanderbilt in Nashville, TN and had his kidney removed in March 2016.  The doctors there discuss everything with each other.   That being said....that was 5 years ago.  Since that time, our daughter got married (I posted a picture of them dancing at her wedding on this forum) and she and her husband have 2 children, so we are grandparents!!  

Best wishes in your journey.  Push for the best care you can get!

Anita

Anita
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1 month 6 days ago #60755 by sara.anne
Replied by sara.anne on topic Tumor found in the Ureter
Since you are at an excellent site (you already got a second opinion!) I would feel comfortable there.  Most patients are NOT being treated at such a place.  

AND the reaction of your first urologist tells me a lot about him!  Any physician should welcome a second opinion.  There are two outcomes to such a consultation;  the first is that the second doctor confirms that everything is as it should be and the second is that something better for the patient is suggested.  My urologist told me at the beginning that if it ever came to the need for a radical cystectomy (which it hasn't, thank goodness) he would INSIST that I get a second opinion!

Keep the course!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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