Susan – Delayed Diagnosis, Part II

One year ago today, I had a 75 gram bladder tumor resected. The diagnosis was apparently tricky and I saw terms such as sarcoma, sarcomatoid variant and carcinosarcoma on various reports.

I asked the urologist “Is it survivable.” He looked down and didn’t say a word –
Not the “no” I was dreading nor the “yes” I wanted to hear. Then he said I should go to a major cancer center for treatment and I got the impression that meant a r/c.

Since then, I have had chemotherapy with six different drugs and no objective response to any of them. [The literature I have read suggests that sarcomatoid variants  “are resistant to mainstream systemic treatment.] I also received radiation treatment (with low dose taxol) that did shrink the bladder tumor and I was accepted for an r/c.

However, when I had my pre-op imaging there were multiple mets (liver and lung) so the Surgery was cancelled. Thereafter, I received the final two drugs in the list of six (taxol and gemzar) – the first four were included in mvac.

This all sounds pretty dire, doesn’t it. The thing is that I am still feeling well –especially since I recently had another turbt and had a 1 cm mass removed (a calcified tumor).  I have enough energy to forgo naps and to exercise fairly vigorously (walks on the beach and fairly fast pedaling on my stationary bike for 20-30 minutes at a time.

Everyday I wake up, I take a deep breath and use the bathroom. So far, since going off the most recent chemo and having the turbt – the results of those “tests” (being able to breathe well  — no subjective indication of bladder or liver trouble) have been fine so say a prayer of thanks and go about my day – teaching, running a speaking center, writing, family and household matters and, everyday now, checking in on Bladder Cancer Web Café.

God knows but I do not which day will be the last day like that – but I do not want to ruin these days with anxiety about what is around the corner.

I am about to get a consultation at another major cancer center. I hope that a treatment plan can be developed to give me more of these good days than can reasonably be expected – maybe an off label drug, or a clinical trial or some use of chemoradiation (again). But for today, I feel better than I did this time last year. 

To Life — Susan (mssmr)

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