Just an update. I had the cystectomy at OHSU on March 28th, and I am currently at home recovering. The surgery itself was successful and I am progressing as planned. The only problem encountered is they did find CIS in the ureter margin. They removed as much as they could in order to make the attachment, but there is still a likelihood of cancer. Other than that, I am feeling pretty well aside from the incontinence, which was expected once they pulled the Foley catheter out. I still have the SP catheter in for bladder maintenance and it will be removed in a few weeks once the bladder starts to expand and I my muscles heal enough to support it.
I was pleased with the robotic surgery. I was able to get up an walk almost immediately and have been walking a few miles every day on my treadmill. The biggest issue so far has been with digestion. As you can imagine, taking part of the bowel to build a new bladder is not without challenges for the digestive system. I've been dealing off and on with Ileus, which is a blockage of the intestine. It is something that usually resolves itself, but it can be quite uncomfortable.
One other tip for people who undergo Neobladder surgery. Make absolutely certain your supply chain for the bladder maintenance is well understood prior to the surgery. They will send you home with enough material to get you though a few days. However, what I found is that you wind up doing more irrigation than the recommended twice daily, and the supplies do not last as long as you would expect. I've made few runs over to my Kaiser Urologists office to get supplies to tide me over while waiting for the medical supply company to deliver. It is just something you probably don't want to deal with after the surgery.
Thanks Sara Anne! While my company is with Kaiser, I have paid for their "Added Choice" plan which allows me to go out of network. This is really the first time I have tried to use it and it wasn't as easy as I would have hoped. After some discussion with their member services group and some back and forth with my urologist, I was able to get him to give me the referral to Oregon Health Sciences University Hospital. He is also putting me in touch with the local Kaiser surgeon who does robotic surgeries. Kaiser will do the cystectomies robotically, but has not done intracorporal neobladders robotically. My urologist made some inquiries with contacts from OHSU and he believes they might be able to do the surgery. Hopefully, it will be covered by my insurance. The conversations with member services give me some confidence that it will, but you never know until you get the preauthorization.
One thing that we always urge patients facing life-changing surgeries or treatments such as cystectomy is to seek a second opinion and ask detailed questions of the surgeon they are considering. Such questions include the availability of options such as robotic/open surgery and, in the case of a neobladder, how many the surgeon has done. This is a complicated surgery and the success is very dependent on the surgeon's experience and expertise.
Unfortunately, a "one-size-fits-all" medical setting such as the one you belong to would probably NOT pay for this, nor do you have the choice of going elsewhere without paying for it. Radical cystectomy is a VERY expensive surgery.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
My cancer recently progressed from CIS T0 to T1 (first diagnosed in 2017). I have had 24 total BCG treatment, and failed treatment twice. My doctor and the oncologists have recommended cystectomy, as the general consensus is that simply moving to chemotherapy is akin to kicking the can down the road, with the potential to be worse later on. I spoke with a one of my in-laws whose nephew is a professor of oncology at UW-Madison and she passed along my history to him. He also agreed that cystectomy is the route to go at this point. I have also had my second staging biopsy (standard practice is to do another biopsy prior to surgery) and it confirmed the T1 diagnosis. The good news is that it hasn't metastasized outside of the bladder, so long term prognosis is very good if the bladder is removed.
They scheduled my surgery for January 25th. When I had the initial call to schedule my meeting with my surgeon, I asked if the surgery was going to be performed robotically or laparoscopically? The scheduler did not know and kicked the question back to my urologist, who later informed me that since I opted for a neobladder it could only be done as an open surgery (neither robotically or laparoscopic). I am a patient with Kaiser Permanente in Portland, OR. From what I have seen on line, it appears that robotic surgery, even for cystoscopy with neobladder, is pretty common. I have seen one study, completed in 2018 that showed the outcomes for cystectomy robotic vs. Traditional are quite similar, the only difference being that cystectomy done robotically heals faster with much less blood loss.
I asked my urologist for a referral to OHSU, but he is telling me he can't do that since Kaiser can offer treatment. I realize I am running short on time, but I would still like to explore options, does anyone have any advice?