I think the good news is that the one woman, Dr. Wilson, is actually part of our insurance plan and we do not have to get a referral to a specialist. I actually learned that in the past few months in looking for a Dr. for myself. I am planning to show my husband this thread and talk to him seriously about it when he wakes up. The biggest hassle in my experience was getting the records sent since the new Dr. was not part of the immediate network in our area. So if we are going to do this, we probably should get the ball rolling today.
Thanks again so much for the information and support, not to mention the thoughts and prayers.
I knew some of the experts here would reply to you. It is a lot to handle and I know you and your husband don't want any more bad news, but I would RUN not walk to get a 2nd opinion. Like Pat said it's vital to proper continued treatment. Call today, get the referral for the call and don't let them put you off for any great amount of time. (My referral was originally put off 1 month from my Dx, but I begged and got in within a week.)
3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011
Thank you all so much. I don't think we've even thought about the fact that we maybe should get a second opinion. I don't know how my husband will feel about that. It was just such a shock as I'm sure you are all familiar with. It sounds like you all would highly recommend at least a second opinion from either the local Dr. Wilson or MD Anderson then? One of my questions that I was actually able to think enough to come up with was that if the CIS can be sneaky about metastisizing(sp?) then shouldn't we be doing a full body CT or something. His Dr. said that since they had done a CT of the kidneys and ureters and those came back clean it should be fine. Does that sound right to you? They did blood work prior to his surgery last week, but she didn't mention looking further. He has had a rough few weeks prior to this surgery- a flu like illness with a cough that lasted a few weeks (gone now!) and then some days of loose stools followed by a couple of days of vertigo out of the blue. He saw our family Dr. for that and he thought it was just part of a virus. Now my brain is freaking out a little about those symptoms. However, they have not continued.
Don’t waste any time if it is G3, if it starts to spread it can do a lot of damage and prolong treatment. Dr Shandra Wilson CU Aurora is very good and one of the nicest doctors you’ll ever meet.
As far radical Cystectomy and diversions, there are three. The first is a neo bladder which uses part of the lower intestine to create a new bladder and uses the original plumbing, requires potty training and a regiment to stretch it to a specific volume. The second is called an Indiana Pouch that is similar to a neo bladder, but instead of voiding normally, there is a valve placed in the belly button and a catheter is used to void. The third choice is the ileal conduit, it uses a very small amount of the lower intestine, just enough to connect the ureters to the abdominal wall to use an external bag.
Again, don’t waste any time for second opinions or referrals.
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...