The following is from a new user Sherri. She is having a little problem getting signed in and while we are working on it, I told her I would post this for her so that she could start hearing from others.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
All I can say is Sloan Kettering is highly respected and you are in good hands. I would encourage asking lots of questions. It would be just speculation but, as you said the scan was clean & blood work was good then you have something good to hang on to. I am almost a newbie being DX;d 5 months ago-non invasive papillary ,small tumor taking BCG for now. Feel free to get set up with this site. It is WONDERFUL and Cynthia does a great job. Take one day at a time-I know that isn't easy. Would hazard a guess in a year you'll look as this a just a bad stretch.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Sherri......they THINK it is muscle invasive? If your pathology slides were sent to Memorial Sloan i think they would have been definative on that. Were the slides not good enough to make a diagnosis? I've never heard of a partial done on muscle invasive bladder cancer. Where are you being treated? I would seek a second opinion in person at a major medical/cancer center. www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4HMVSN6-3M&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_version=1&_urlVersion=0&_userid=10&md5=9079fbf7bb6eec6a6e2dddea63dc0fb7
By the way i was also muscle invasive low grade and second opinion at MSK..my blood work was perfect, my CT and chest x-rays clean but for the blc, my bone scan perfect. Dr. Herr did my second TURB and removed what the first uro did not get out and got all the margins and all of the cancer from the first layer of muscle. I think he saved my life with his magical scalpel. I then went on to have a cystectomy and Indiana Pouch and i'm still clean going on 6 yrs........Pat
P.S. found this
Germ cell, bladder and other non-trophoblastic malignancies
Non-trophoblastic cancer cells, germ cell tumors (dysgerminoma and testicular tumors), bladder cancer, ovarian cancer and certain other malignancies may generate a small amount of hCG alpha and beta subunit. Commonly, the amount of subunit is insufficient for combination to occur to make intact hCG. In these cases, variable concentrations, commonly very low concentrations (<100 mIU/ml) of free ß-subunit is present in the serum, and low concentration of predominantly ß-core fragment (the terminal breakdown product of ß-subunit) in urine samples. The free ß-subunit in serum may be detected by total hCG assays (detect intact hCG and free ß-subunit). Often the most sensitive marker for these disease may be ß-core fragment in urine.
So sorry you are going through this. I was diagnosed in April. For a very short time they talked about doing a partial cyctectomy on me. My Tumor was at the dome of the bladder and they thought it might have a urachel origin. After my biopsy it was clear that it was not and that it was muscle invasive. My doctor was very adament in his belief that if there is muscle involvement that a radical cyctectomy was necessary.
I know that this is a hard time with some tough decisions to be made. Make sure you get your information from very qualified people. I am 39 now and know that I will be around for my 9 and 12 year for a long time. If you need to talk I am in the chat room a lot or you can email me.