Bladder- Other (urachal Mucinous Carcinoma)

Dawn and Linda...I've been reading your discussions. My mother was diagnosed a few months ago. In March she had part of her bladder removed and last week underwent a craniotomy. It seems to have started in her bladder then traveled to her orbital area (eye socket) We were told she is in stage 4. We were also told that chemo does not respond to this type of cancer, yet I have read a few discussions involving chemo. We hear alot of "this is rare" I just want to make sure her Oncologist is on board with these treatments. There doesn't seem to be any time for guessing. Her Urologist believes he "got it all" and her Neurosurgeon was able to remove a little more than 90 percent. He told us that "this was not a cure, the surgery would improve the quality of her life and this will kill her" We are heartbroken. I would really like to hear how you both are doing. Thank you and God Bless!!

Paula

Paula, I can understand why you are feeling confused. I was diagnosed almost 2 yrs. ago, a very grim prognosis. I have been in remission for over 1 year. My treatments of Gemzar and Cisplatin went well. Dr. went full force and saw results after just six months of treatment. THis was much quicker than he expected. He still reminds me that I am very "unusual" compared to others with this type of cancer. He told me that I might not respond to the chemo and also this disease would probably take me, but he did not give a time frame. I take one day at a time. Dr. will run scans etc. in late summer.I have a chest port, that has to be flushed every six weeks.
I would get another opinion on whether or not your Mother should have chemo. I have heard of a few that did not have chemo and are successful.This disease is so rare, that alot of it is trial and error. My cancer center is the fifth largest in the country and my DR. is the director clinical trials. He keeps up with the latest treatments etc.
God Bless and let me know how things are going. Linda

Hi Linda...thank you so much for responding!! It is great to hear about your remission. I'm sorry for everything you've been through....all of you! These discussions have given me hope. I am sharing them with my family. Thank you all for sharing your personal stories!!

Paula

I understand from your message from Feb 2005 that your wife received the chemo bath and the remaining cancer cells were eliminated. Does Dr. Lowey still work with doctors at MD Anderson? My friend has had two surgeries and chemo, cells still remain in the abdomen. She is working with MD Anderson but she wasn't told about this. I saw your message and it sounds like its worth trying. What are the side affects of the chemo wash? How long after the treatment did she learn it was successful?

my husband is going to have surgery with heated chemotherapy. I would like to know how your wife is doing. And how radical the surgery she had was.
thanks,Brenda

need info on the heated chemo surgery