We are located in Glendale AZ and yes my mother is actively involved with all discussions regarding her care and options. We are a solid mother/daughter team. She also lives with me and we are in this together til the end.
Right now we are seeing a doctor at the Academic Urology & Urogynecology of Arizona. Our doctor is one of a few doctors who do a good number of cystectomy's in the valley, so we trust him wholeheartedly. However, we are going to get a second opinion and our friend just recommended another doctor in the area who treated her husband and he is now cancer free.
There is also the matter of insurance. We have learned our network is small here in Arizona, so that is also an issue right now. I will do my research for a specialty clinic and see what I can find in the area.
I can't thank you enough for the suggestions and support at this time.
I am so sorry to hear about your mother. This is a difficult one.
First, since hers is not a typical case, I would want to be sure that she is being seen at one of the very best places for bladder cancer treatment. This would be a medical school or a National Cancer Institute Center of Excellence,
Where is she being seen and where are you located geographically?
Since she is in exceptional health, she should be involved in all discussions about her options. Cystectomy is not a trivial surgery, as you have discovered, but many patients do well with it. Radiation is NOT the usual treatment of choice for bladder cancer..,.,there is often damage to tissue other than the tumor(s) which precludes any other treatment possibilities. Chemotherapy, while definitely not fun, could possibly retard any growth or spread for a while. All of these factors need a caveat "it depends."
Here is a link to the Cleveland Clinic's description of the options for surgery for bladder cancer that many of us have found useful:
In your mother's case, given her age, the ileal conduit would probably be a good choice should she decide to have cystectomy, since it is the simplest and involves less surgical stress.
Again, I would urge a prompt second opinion at a place that specializes in difficult bladder cancer cases if you aren't at one already.
Wishing you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I am writing as the primary caregiver to my mother who was just diagnosed with stage 2, high grade bladder. We are completely devastated of course, but unsure about what to do after we heard our options. Cystectomy, chemo, radiation or just not do anything at all.
My mother is in fantastic health, exercises everyday, eats a healthy diet, a little high blood pressure, but otherwise very healthy.
We were told by our doctor that the normal procedure would be a cystectomy, but at my moms age there is the question of quality vs. quantity? Would the recovery process be to much for her, what about the complications, etc?
He also suggested we might want to talk to an oncologist, but we figured that probably wouldn't help much without doing the surgery to completely remove the bladder or would it?
I am new to the site because I wanted to talk to survivors and perhaps get a little feedback as to what our possibilities are at this time.