OK..all i can say is RUN very quickly away from this uro and get a second opinion...one of the very best in bladder cancer is at USC/Norris...Eila Skinner
Did you ever receive a pathology report? chances are you need another TURB which is pretty standard today especially to remove margins from the first TURB..and if there was no muscle taken for pathology thats a really bad specimen.
Please go to someone extremely experienced with bladder cancer. USC/Norris has a great reputation. I can't tell if your male or female or if you would prefer a male over a female surgeon...Eila is female..but there is also Donald Skinner there (no relation..)http://www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1088
Please don't delay in getting in touch with these people.
I am in Thousand Oaks, Ca., zip 91362...its a suburb of Los Angeles, just a bit north of it.
i just had 3 tumors removed from my bladder by a urologist..one was aggressive, he said, and "usually returns", in which case they would ahve to remove the bladder..He said to ocme back in 3 months for another cytospcic exam..the biopsy said grad 3-4..I asked what I could do to prevent it from coming back, and asked to se an oncologist..he said "OK"
Meanwhile, Cat scans of the whole abdomenal area and blood vessels (they shoot iodine in the veins) showed nO other cancers.And otherteste were normal also
The oncologist was fairly young. She scared me saying I would have to have 6 sessions of chem with Cisplatin and Gembicitine?..and then MAYBE radiation, but after that I would still have to have the bladder removed !
She said that altho the Cat scan resutls were "ver good..no lymph nodes were involved, etc", the bladder would still have to be removed...that bladder cancer was "sneaky"..I guess they feel that some cells may have escaped detection.
The URO had given me the impression that he had removed all the tumors ( he had said "we'll have to remove the tumors,and after the surgery, said "it usually returns..PLUS the bleeding has stopped), but she said they do not take the whole tumor out (she has not spoken with him yet, she just read all the reports)
I don't mind the chemo, but I have to think about the bladder removal..i understand it's pretty intense.
The curious thing is that as far as I know, the biopsy report said it was a grade 3-4/4, but did not say what stage it was..and that it was a transitional cancer (which the onco said was "bad").And it said that ithad penetrated the lumina propria?, BUT there was no muscle tissue to evaluate ( I thought that was a positive, in that maybe it had NOT gone into the muscle, otherwise some muscle would have also been removed for biopsy..but maybe I am wrong??)
I'd like another opinion, espcially re the biopsy report.
1) Any california specialists I can get go to for a second opinion, re the biopsy report?
2) also as to the side effects of 6 sessions..she said "i'll discuss that with you later", which makes me nervous..maybe 6 sessions are not as abad as 20, etc? How many sssions have others had that underwent chemo?
3) she said other less invasive methods that I had reearched, such as such as BCG vaccine, Immunotherapy, Retinoid, DMFO, 5-Fluoronacil, PDT, Laproscopy, tomotherapy (that may be radiation), had all proved ineffective. I also mentioned a European drug called Ukrain, which supposedly is 100% effectve, but she had never heard of it. has anyone here heard of it? maybe it's not in the uS..It combines a drug called Thipeta nd clandine.
4) i asked if afterteh chemo, ,if we could just monito the bladder, to see if any cancer remained, or came back, such as cat scans, blood, urine tests, BEFORE we removed the bladder..she said "NO" and that the only ay to know if any cancer remained was to look at the reoved bladder !!..Has anyone heard of the BTA urine test, or other tests?
Since she had not even talked with the URO yet, she finally said she would talk to him about his reommendation, and see me in another 2 weeks .
5) Any other suggestions re the treatments recommended, etc would be helpful also