Hello, your sister is lucky to have you. I was diagnosed Thanksgiving Day 2009. I live in Sacramento. I was in El Paso for the holidays. Going back to November 2007, I had pain in my back, went to UC Davis Spine Center. First, diagnosis? Metastatic cancer - get my affairs in order. Then test after test after test for 6 more agonizing months. The last straw was when the doc told me it didn't matter that he couldn't pull up the latest test results from a full body bone scan on the screen - the only solution was to cut me here to there, crack open my chest, install plates and screws along my spine. I said no thanks. I lived in extreme pain for 2 years. Fast forward to last Thanksgiving when I was dianosed with with bladder cancer. I made the smartest decision of my life. I went to the Mayo Clinic in Scottsdale, Arizona rather than endure the months of appointments and tests at UC Davis.
When I recommend Mayo, I hear "it is too expensive to go out of town for treatment." Don't let the perceived cost scare you. It is so not true. Mayo's charges to treat not just one tumor, but two, were less than the 5 hours I spent in the ER.
You can apply online. Mayo responded to me in 24 hours. My first appointment, I talked to Dr. Swanson, he reviewed the MRI I had done in El Paso, performed a cystoscopy right then!! I didn't feel a thing. I got to see the tumor on the TV monitor. Afterward, he told me about removing the tumor (TURBT). Within a matter of 4 days, I had all the tests (all done one after another - no waiting), surgery (procedure in Mayo terminology), and home recovering. There is never any waiting at Mayo. They run on time and expect you to, too. The cost to me in terms of list income, pain, frustrastion, and worry?? Less than if I had stayed with UC Davis. 4 days! Your sister ws diagnosed at least 30 days ago. Go to Mayo, if it isn't too late.
It occurred to me that if I was going to be Mayo seeing the best diagnosticians, I might as well have my back looked at. It took 30 days to get the records from UC Davis. They wouldn't send them when I begged, they wouldn't send them till they were good and ready even after Mayo contacted them. I saw the Mayo doctor and told him what UC Davis' Spine Center's doctors told me - about the surgery. The Mayo doctor said "we don't do that anymore - it is old school." They told me about vertebroplasty where cement is injected into the vertebra replacing the bone eaten away by the tumor. 2 days later I had the procedure. It took 1 hour and 40 minutes - 1 hour for the cement to set. I woke up the next morning, hunched over as usual to crawl out of bed on my hands and knees - like I had been doing for two years...when I realized that I had no pain in my back what so ever. Unbelievable. The doc promised me I could ski again. I was happy just to be able to carry a purse!!! It is like the last 2 years of pain vanished. Absolutely amazing.
Bottom line. Don't drag it out. You will be miserable, your sister will be miserable. I know, I was there. Sadly, during the drawn out process at UC Davis, I became alienated from my sister. I went through the process at Mayo by myself. But, it was a piece of cake.
I can't say enough good things about the Mayo Clinic. Every thing is first class. Think there is a line of patients backed up from dawn to dark awaiting surgery? Mayo has 19 - yes, 19 operating rooms. Think you have to wait to have your vitals taken? Think again. 19 Teams are prepping the patients. Staff were color coded uniforms to you know who is who. Amazing. Another cost saver? 85% of all procedures are out-patient!
Your sister is so lucky to have you. When we are first diagnosed, our minds kind of go "blank" (been there, done that) so it is wonderful to have someone who is at least half a step away to hold our hand and go with us on this journy.
I would strongly second Pat's advice (her advice is right on at least 99.9% of the time ) Squamous cell carcinoma is not the most common form, and it is important that she get her case reviewed at a center that sees LOTS of bladder cancer and that treats a LOT of women. If I were in your sister's situation, I probably would be on the bus to USC-Norris.
Good luck to both of you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
9 years 6 months ago - 9 years 6 months ago#33501by mmc
You might also try to get your sister to login this site as well. Many of us have had our bladders removed so we know about the surgeries.
There are many women here who can also tell answer whatever questions she may have as related specifically to women.
It sounds like UC Davis is her 2nd opinion doctor and if so she already miles ahead of some people by getting to 2nd opinion doctor as soon as possible after diagnosis.
Pat will probably be on with information about UC Davis and the doctor's there. She's done lots of research and is the best source of information on doctors/hospitals (and quite a lot of other stuff, by the way).
The key is LOTS of experience doing the surgeries and the particular type of diversion that your sister chooses.
There are options these days as they can make a new bladder out of intestine. Many times, women will get what is called the Indiana Pouch. The segment of intestine is formed into a pouch and a stoma is created that goes to the navel (or near it if it can't be done at the site of the navel for some reason). Then she would just put a catheter in it to drain it periodically.
Another method is an ileal conduit. That's the one that been around for a long time where the ureters are connected to a stoma and a bag is connected outside the body to collect the urine.
Another is the neobladder. Similar to Indiana Pouch (named that because that is where it was invented) but it is connected to the urethra. This is riskier for women than it is for men because women have shorter urethras. Also, many times those of us who have neobladders wind up in situations where we have to catheterize ourselves either periodically or every time we go (depends on possible complications from the surgery). If women have to catheterize, they have a higher risk of infection if they are going through the urethra.
Pat has an Indiana Pouch so she can tell your sister all about that as well.
Sorry that your sister has this diagnosis but there are lots of folks here who have "been there/done that". We've educated ourselves and are happy to share what we know and/or have experienced.
Let her know she's not alone. There are many, many bladder cancer survivors. Living without a bladder isn't really hard to do these days. I'm sure she will have tons of questions and we're here for her (and you).
<I had said Pat will probably be on and then when I posted, I saw that she already posted. Guess I took too long typing my message.>
If your sister wants to speak with someone over the phone or something, I am sure there are quite a few ladies here who would be willing to do so. We all know how scary this can be for your sister right now...
Dr. Evans is head of urology at UC/Davis and he has good credentials but i think he specializes more in prostate surgery and probably has not dealt with lots of females. Here's his bio
One of the things you definately need to ask is how many women has he done THIS year and total number of cystectomys and reconstructions. Can he do an Indiana Pouch or does he only do the neobladder or ileal conduit. And whats his success rates with neobladders with women.
You're in a great place in the country to get top care and if its possible for your sister to go to USC/Norris in L.A. thats the Top place for cystectomys. They are all good and very experienced in all diversions. Dr. Inderbir Gill, Dr. Sia Daneshmand, Dr. Eila Skinner
Since squamous cell is only presented in about 4% of bladder cancers its really important if your insurance allows to get to the best.