[Darice]

My hubby was diagnosed with treatment-related MDS two years ago. Six months prior to that, he was diagnosed with bladder cancer . . . actually, UTUC . . . it is in his kidney, never has been in his ureter or bladder. Gold standard for that is nephrectomy, but it was determined at the time (prior to tMDS dx) that he would probably not survive that surgery, so we treated with aggressive but lesser ureteroscopies and lots of chemo instilled into the bladder.

Tried Vidaza with the tMDS, but that didn’t work for him, so we’re just doing labs and Neulasta injections every other week. Miraculously, very few transfusions have been necessary. Now the UTUC has returned, still/again in the kidney . . . right renal pelvis. Incredibly, he is in better condition now and it has been determined that he could probably survive the surgery. We have four options:

1) Do nothing. This is probably the non-starter in the lineup. We’re fighters.

2) Follow the previous route . . . a repeat of the first time around with ureteroscopies to cut and scrape and burn the cancer away followed by the instilled MMC. First time, that was a total of six ureteroscopies and 18 instillations of the MMC. While a ureteroscopy is a much lesser surgery than the nephrectomy, it still involves general anesthesia and the potential for any of the bad things that can happen during surgery. 



3) Initial ureteroscopy (this coming Wednesday) to biopsy, followed by total nephrectomy. Nephrectomy would be laproscopic and robotic, and would take the right kidney, ureter, and bladder cuff.

4) Same as option 3, but just taking the kidney and leaving the ureter stump and bladder cuff. Our surgeon has only done it this way a half dozen times . . . usual is to take it all . . . but sometimes special circumstances make this the best option. It would be a much easier surgery, and he would be comfortable with it (if all is as expected with the ureteroscopy) BECAUSE the cancer has never been in the ureter or bladder.



So far, we're leaning toward option 4. Hubby is pretty positive about getting rid of the kidney and (hopefully) the cancer and getting on with life. I don't think he entirely understands how tough the surgery and recovery might be, but he's tough and is completely comfortable with this. I worry a little more . . . OK, a lot more . . . the mechanics of it all . . . the problems with the pain meds . . . difficulty getting in and out of bed . . . him feeling miserable for a good part of the summer. But then I know how tough he is and I, also, want to be rid of the cancer. Either way, we'll be stuck with cystos every three months for the next two years at least. But the fears of a recurrence will be less. I hope.

We have to make our final decision and let the doctor know Wednesday morning . . . it will affect how he does the ureteroscopy.

Any thoughts? Previous experience? Thanks!