This is for boston dotty, I can feel your frustration, kinda the run around, I sooo know. My mom started to have pain way back in July!!! She saw her former oncologist, who totally blew her off, even though his PA felt the initial lump. Then an ENT, a neurologist, numerous CT and MRI scans finally her family doctor ordered a PET and there we had it!!! You have every right to demand what you want, even if they say that insurance won't pay because of diagnosis. Needless to say my mother is no longer with the oncologist who blew her off, her new one is really great. Also, I would stay off the internet, I use to work in the medical profession and unless we gave a specific web site and what to specifically look for. But keep us updated and I am praying for you and your husband.
today (friday ) im waiting for the Doctor to call they had a supposed meeting yesterday to discuss whats next . and im going to ask for a pet scan . i feel like im running around in circles . and im finding the waiting the most difficult .last time i talked to the Doctor he said it was T1 high grade . i did not ask for prognoses when they don't even know where the cancer is . im feeling really depressed over this whole thing right now ,the more i read the more scared i get .i really hate that word cancer ! sorry if im venting it doesn't help .
I'm guessing you are feeling overwhelmed about now. One way they can get some idea of where the tumor is, is by imaging (like a CT scan). Have they done that? You might consider a second opinion at a top institution. I no longer worry about hurting the doctor's feelings by going for a second opinion. There don't appear to be second chances with this disease.
I'm not sure if you have read any of my previous post but my husband was diagnoised with superficial bladder cancer almost 3 yrs ago. he did the BCG treatments and went for all his follow ups all along we were told that everything was good. unfortunately that wasn't the case in Aug he was diagnoised with stage 4 bladder cancer (the cancer metatstised to his bones) we found out because he had been having servere back pains.. I am not very knoweledgeable when it comes to bladder cancer.. the whole thing scares me.. I'm just wondering why they haven't done any test (biopsies) to see where the cancer is coming from ( it most likely is from the bladder) but can't it be a secondary cancer, and if thats the case aren't there different chemotherapies used to treat different kinda cancers,, I'm not trying to scare you and like I said I don't know alot about it,I just look back on my experiences and wish i had done things differently from the very begining,, please know you and your husband will be in my thoughts and prayers and try and keep a posotove attitude
this is my first message and am i scared, my husband had half of his bladder and lymph nodes removed dec,2005 because of cancer ( we thought we were home free and very lucky . then in Oct 2006 his urin test came back postive for cancer they started chemo again but he developed a severe urin infection so now we are waiting for that to clear up. I asked the Doctor where the cancer tumor is and he said he didn't know , has anyone ever heard of not knowing where the tumor is ? he will be getting chemo in his kidney and the tubes running from kidney to the bladder ( can't spell it ) they said his bladder cancer was stage 3 high grade