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Should I be seeing an oncologist
I April I had a baseball size T1 tumor removed with no follow-up treatment. In September I had 20 T0 tumors removed followed by six weeks of BCG. In December I was scheduled for a cystoscopy and biopsy where five more T0 tumors were found and removed. I am about to start another six week cycle of BCG. Through all of this, my urologist is the only doctor I have seen. He has never referred me to an oncologist. Is this odd and should I have seen an oncologist by now? Any and all feedback is much appreciated.
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5 Replies
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I go to John Hopkins, they are very good there. You don’t have to have an invasive bladder cancer to be seen by them. It was not a hard decision for me to go to the best place I could. I just wasn.t going to mess around with my life. Good luck, Rocky
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Baseball sized and then a bunch more? You should seek a 2nd opinion at a major bladder cancer center. The best places (e.g. Memorial Sloan Kettering, MD Anderson, etc.) have Urologic Oncology departments. They work as a team with doctors who specialize in bladder cancer.
Did your doctor happen to mention the grade of the cancer? Usually either 1 through 3 or High grade/Low Grade.
In either case, you should really get to the doctors at a top place. The two I mentioned are preferences if travel is not an issue at all. If it is, let us know where you are located and we can see if we can point you to a place and doctor closer to you.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I’ll agree that a 2nd opinion with a bladder cancer specialist may be in order. Oncologist usually don’t get involved until a tumor has invaded the muscle (ie. T2 or deeper). A lot of specialists will do a 2nd TURBT 4-6 weeks after the 1st with any high grade/T1 diagnosis to be sure they got good margins. It’s important to get the stage/grade correct so that you get the correct treatment plan in place. If I read your post correctly you got a diagnosis of T1 with no aditional treatments until you had a reocurrence. It’s time for a 2nd opinion with a doctor that specalizes in treatment of bladder cancer.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.
You only need to ask yourself, what do you have to lose by seeing
an expert in the field of bladder cancer, and what do you have to lose by not seeing one? Another reason to see one is peace of mind.
Wishing you the best!
Duke
You are discovering one of the bad things about bladder cancer…it comes back!! And BCG is not always the most effective for low grade tumors.
Usually, bladder cancer that is still localized in the bladder is treated by urologists, not oncologists. So there is nothing unusual about your not being referred to an oncologist. However, because they keep returning, it would probably be a very good idea for you to seek a consultation/second opinion at a place that treats LOTS of bladder cancer. They very well might have some better ideas as to treatment for you.
Where are you located? Perhaps some of the people on this Forum can suggest places/urologists for you to consider. Unfortunately, many urologists are NOT experts in the treatment of bladder cancer, and you really need to seek out someone who is.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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