10 years 10 months ago - 10 years 10 months ago#20659by momof4
Believe me we all know the shock that you are going through, the all hours search for information to somehow show that what you have been told isn't true, they missed something they must have right?
I think that even though your Oncologist is young she is probably more on the right path than your Uro. but that being said, you will need a top Doctor, and probably a surgeon...Better to get going on that as soon as possible.
One of the hardest things that I have found is trying to separate yourself from the cancer. The cancer is not you, and it does not have you unless you let it. Your job right now, and it is a tough one, is to do everything possible to get that invader out of your body. If it takes your hair falling out, removing your bladder, chemo, radiation, whatever...it has no right to be in your body, and you have to fight it with all that you have.
You are more than your hair, and you are more than your bladder, and you are more than this cancer...you can do this...you must do this...whatever must be must be...get rid of it as soon as possible, anyway that you can, and do it with a team that is the best skilled at all aspects of killing it.
You are lucky in the fact that you are in CA...There are some of the best people in the country right at your backdoor. Find them, ask for help, and get it done.
This board is for support, you may find as others have this is invaluable during the coming months...We are here for you...it is a place to ask questions, get real, whatever those emotions or challenges are. , and it is also a place to laugh, and get some relief from the pressures that we are under, all in various stages...You will be surprised how quickly you learn, and in no time you will be assisting someone else.
Sorry if it seems we are a little agressive, but compared to Transitional Cell Carcinoma, we are a kittens,
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.
Life isn't about how to survive the storm, but how to dance in the rain.
Since the, I emailed Dr Lamm, who urged the BCG treatments,and I have found another URO whose subspecialty is Oncology,and he agreed that the best thing now is to start the bCG treaments (its been a month since the TURB0 and then do another biopsy. I anm starting the BCG next week..6 sessions, then the biopsy, nd iof thing look good, it is urged to do it every 3 weeks for maintenance.
All blood tests, and other tests show it was NOT an invasive tumor..its a T1, but high grade. Alos the American Urological Association website says for this type of ca, their recommendation is TURB followed by BCG.
I guess the oncologist I saw ( whose specialty is Internal Medicine..I dont know how much oncology she has done..this was at a County Hospital, since I od not ave insurance)thinks the chemo, ect is "prevention"
A second opinion is definitely needed here. You can not make clear decisions based on the information you have been given. I have not heard of the european drug you are talking about so maybe some of our friends over there will also respond. Pat is right when stating that UC Norris has a good reputation, I went to UCLA because my doctor's mentor was Dr. deKernion. Choose a good Bladder Cancer place soon and get that second opinion.
I will strongly second what Patricia advised....RUN FOR A SECOND OPIONION! You will learn as you get familiar with the Forum, that one of our motto's is "SECOND OPINION!"
In fact, my uro told me at the beginning, when we discussed second opionions, that I was welcome to get one at any time and that, should it come to a recommendation by him for bladder replacement, HE WOULD INSIST THAT I GET ONE.
I am not familiar with USC's program personally (I live in Oregon) but my uro trained under their auspices and sent his own father there for prostate cancer treatment. Couldn't think of a better recommendation.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society