Forum

× click the New Topic button to post

After 7 years, papillary Ta,High grade

6 years 10 months ago #40863 by survivor
Yes, Mike. Most probably, I will be scoping in a month. I have a surgery scheduled to remove my native left kidney with the ureter cuff, as that is at high risk now.
To provide some background, I originally had a kidney transplant when I was 23, in 1998 due to chronic renal failure of both my kidneys. Thanks to my sweet mother who donated her kidney, I am alive today. 7 years back, I got upper tract TCC ( muscle invasive, high grade tumor) in my right native kidney's ureter. So, had a surgery to remove the kidney and the ureter. Was a complicated one, because of my transplant kidney. Had 4 cycles of chemo as well. Have been regulary following up with cystos and MRI scans from then on.
After 7 years, on finding this tumor, the doctors are advising me to remove the native left kidney as well along with the ureter as it is more of a liability. Anyway, it is not functional and not being used. I am due to have the surgery by next month and my URO would have to do a cystoscopy to make sure there is no tumor in the bladder before the surgery. Just keeping my fingers crossed.

S R
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012

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

6 years 10 months ago #40862 by mmc
Sorry you had a recurrence but it sure took a long time so that's a good thing. It may be one of the reasons that watchful waiting is the plan for you.

Mitomycin is chemo. It is just not administered in the traditional way (in the blood stream). Doing the instillation of mitomycin a couple/few times. You might want to ask about the follow up TURBT though. It is fairly common to do it again after a couple of months just to be sure they got it all. However, if the pathology shows clear margins all the way around and both your urologist and the urologist at Stanford agree, then maybe you don't need it. It's worth asking them both about though.

The BCG (that you can't take) and mitomycin are both really good treatments for direct instillation in the bladder without the side effects of chemo but with very good results.

Glad you caught it early again!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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

6 years 10 months ago #40860 by sara.anne
Sounds as if you are in good hands!!

Sara Anne

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

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

6 years 10 months ago #40859 by survivor
Hi Sara,
Thanks for the reply. I got a second opinion from an urologist at Stanford University. I was referred to him by an urology-oncologist there, who has been a big support for me as I know her personally. So, I am hoping it is reliable. When I said chemo, I was talking about mytomycin instillation. Will check out others too.

S R
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012

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

6 years 10 months ago #40858 by sara.anne
So sorry that you are facing this. I am not an expert, but I think that chemo is only used when there is spread outside of the bladder. The bladder is a contained organ, which is why BCG and mitomycin instillations are effective there.

You were wise to seek a second opinion. I hope it wasn't just with "another urologist" but with one at a center that has a lot of experience with bladder cancer. Since you have some other health issues, and since this is a recurrence, you really need to get the very best advice you can. Depending upon your location, perhaps people on this Forum might be able to suggest such places near you. There are also lists of places with expertise in bladder cancer on this web site.

Best of luck to you.

Sara Anne

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

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

6 years 10 months ago #40857 by survivor
Hi,
I had upper tract TCC 7 years back and was recently diagnosed with pTa, high grade 1cm tumor in my bladder. :( My doctor did a TURB and got it out. He did a mytomycin flush as well after the TURB. Consulted another urologist for second opinion and they are advising the wait and watch mode, maybe, with a couple of mitomycin treatments.I am not eligible for BCG as I am on immunosuppressants. Any inputs please? I am planning to consult with my Uro again for further treatments. Is it OK not to do any chemo right now?

S R
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012

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

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add attachements.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 277 Guests 

Statistics

Total Messages: 50851 Total Sections: 1 Today Open: 0 Today Total Answer: 1
Total Subjects: 6515 Total Categories: 11 Yesterday Open: 0 Yesterday Total Answer: 3
Total Users: 7773 Latest User: WoundNurse
Powered by Kunena Forum