Results of CT scan don't sound good; cystoscope exam TH

Julie -- The person I have in mind is in Houston at M. D. Anderson, Arlene Siefker-Radtke. That's about an 8 hour drive or less than two hours by air. (I live 30 minutes from a good-sized airport.) I have supplementary insurance that pays for travel and lodging for cancer treatment, so it should be feasible -- if I continue to feel well and strong long enough to schedule/do the consultation as a "well"
traveler.

Of course, I'm open to other suggestions -- more than just "open" I'd welcome them.

Yes, the support is invaluable, I'm almost a "full member" already --

my best toall -- Susan (mssmr)

What a quick course we are getting in the direction bladder cancer can take. Rational Therapeutics sounds promising from what I looked at. I didn't know anything about the sarcomatoid variant until after I joined this list. I hope each of our experiences can be of use to others. The support is invaluable.

Will you have to travel far to consult with the rare cancer specialist?

Thank you, Ginger. I will post a update toward the end of the week.
Re Happy times around the corner: Tomorrow is Mardi Gras day and the parade goes right by my house. I hope I can keep up my focus on the present day and feeling well
as long as that lasts. When I am teaching, I do forget my illness. When I get objective test results and research sarcomatoid tcc I am terrified though.

Appreciatively -- Susan (mssmr)

Susan,

Still you remain optomistic, I admire your strength. Your very well connected with what you need to address, I hope for you it keeps you around with us for a very long time. You seem to be focused, teaching etc., even with this road of bladder cancer in the wings. It sounds like the wedding was wonderful, happy times are still around the corner for you. Take care Susan and keep us informed!!
Ginger

Thank you all for your helpful perspectives and questions. It turns out that the urologist did, indeed, "see something". The CT scan mentioned calcification and the
cycstoscope turned out to be a turbt -- a 1 cm calcified tumor was removed. The urologist said it would have functioned like a bladder stone and would have grown to be a big bladder stone. The pathology report is consistent with that of my primary tumor from about a year ago.

I'll see my medical oncologist this Thursday morning. I believe my husband will go with me this time. I did get a copy of the CT scan report and it appears to me that
my most recent chemotherapy did not prevent additional growth of existing lesions/nodules and that lesions/nodules are more numerous than before (Nov. 15).
The literature I've read suggests that tcc with the sarcomatoid varient doesn't respond well to many tcc chemotherapy combinations and, so far, that's been true in my case. However, radiation significantly shrunk my primary tumor and I think I
should ask about radiation for at least some of my mets. Also, I might be a good
candidate for the "Rational Therapeutics" testing since I have at least two
"pathological" (biopsy-sized) mets. In any case, I'm feeling physically well but
terrified that my cancer continues to grow and spread. And I believe I'll seek a consultation with a "rare bladder cancer" specialist who is doing some clinical trials related to rare cancers.

-- Susan (mssmr)

Holly...I reread my last post and it didn't seem to sound how I meant it which was jokingly. How are you and how were your results? Susan, I hope all is well with you also.