Tumor found in the Ureter

4 months 1 week 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
Forum Moderator
The following user(s) said Thank You: NelsJenn

Please Log in or Create an account to join the conversation.

4 months 1 week 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
Forum Moderator
Caregiver
The following user(s) said Thank You: NelsJenn

Please Log in or Create an account to join the conversation.

4 months 1 week ago - 4 months 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

Please Log in or Create an account to join the conversation.

4 months 1 week ago #60751 by Jack R
Replied by Jack R on topic Tumor found in the Ureter
Nelsjenn,

Ureter Cancer is frequently called Upper Tract Urothelial Carcinoma or UTUC. Using all three terms on google will provide many responses.

One recent drug approval for Low Grade Upper Tract Urothelial Carcinoma (LGUTUC) is "Gelmyto", a form of Gemcitabine.

I have had only one kidney since the 60s, thus there has been concern about the possibility of UTUC ever since the bladder cancer diagnosis; thus my interest in UTUC.

Not all ureteral cancers are from the bladder, as you have suspected. Independently, after bladder cancer was diagnosed I was found to have an unrelated Renal Cell Cancer in my one and only kidney. That cancer was described as having the potential to spread downstream to the ureter and bladder. Fortunately, the kidney cancer was successfully (so far) removed.

Maybe it is just me, and my situation, but I would want additional opinions and thoughts on how to address the ureter tumor problem before considering losing a kidney. Reliable sources on google (Cancer Society, well know major medical institutions, etc) will offer possibilities to discuss with your care team about ureter treatment.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: NelsJenn

Please Log in or Create an account to join the conversation.

4 months 2 weeks ago #60746 by swarmy2007
Replied by swarmy2007 on topic Tumor found in the Ureter
Sorry to hear your situation and wish best. 4+ years T1 Hi-grade... 3 turbts and about 50 infusions now 1st BCG failed that then moved to GEMZAR which knock on wood. My original tumor was located at my left ureter entering bladder requiring a stent emplacement for couple months until healed. My concern was spreading back to kidney so am following this subject closely. My Urologist runs my care and is good yet I have a question.... when/why/how would I go about getting preventative scans and on what organs to see if spreading. Seems all being watched in my bladder and that concerns me. Lots blood work but never images. So that's my story of having a very aggressive 7mm tumor on ureter with another lower in bladder then 2 times returned in other areas and I am doing pretty good right now..... well old fat lazy and all but ok besides that.
The following user(s) said Thank You: NelsJenn

Please Log in or Create an account to join the conversation.

4 months 2 weeks ago #60744 by Bills
Replied by Bills on topic Tumor found in the Ureter
Hi Lee
Sorry to hear about your case. As Sara and Alan has suggested you will not find posts relevant to your case because 5 to 10% of people with BC develop upper UT malignancy. 
With that being said you should never loose hope and seek medical consultancy with the best medical hospitals. 
God willing you will get better soon

Thanks and God Bless 
The following user(s) said Thank You: NelsJenn

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne