Stage III Bladder Cancer

Intermittent hematuria started some 3 years ago. A urologist told the referring GP that it was due to some IVC problem, nothing to worry about (even though ultrasound had registered a spot). Last Christmas I started hemorrhageing. A urologist (another one) admitted me as an emergency. At first it appeared to be transitional carcinoma, but the diagnosis was later changed to a stage III invasive tumour. A CT scan showed up no spread, so the urologist suggested cystectomy, probably leading to a Studer pouch neobladder. After much soul searching (and counsel from my family) I followed his advice. Surgery is due very soon. From what I can gather, 5-year survival estimates drop sharply during the first two years and stabilise to some 55% thereafter, 40% for 10 years. Still, its a lot better than the 2 years estimated if I just let things go (its weird for a 76-year old to look forward 10 years).

I thought I would share my (probably quite usual) story with the web cafe, in the hope of getting feedback from more experienced patients with similar histories. Following recovery I will provide update on my surgery and hospital stay. Hope to hear from you.

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Thanks for your e-mails. It’s a real comfort to know there are kindred souls out there. Surgery went quite well – radical cystectomy (3 hours +) – but the cancer had spread to an adjacent lymph node. That means an ileal conduit instead of a neo-bladder because of the need for future chemotherapy (according to one informant, it turns the neo-bladder mushy). Hospital stay was uneventful, the urologist clearly knew his job, the nurses were wonderful, instant pain relief via a self-controlled morphine button. Weight loss about 20 lbs (down from 165), it feels as if I’d aged 20 years in two weeks. The other problem area are the bowels – unique combination of diarrhea and constipation all at the same time! I am told to have patience, it will improve with time. Thanks to helpful ET nurse, I seem to have finally caught on with the handling of pouches etc. – except that they seem to fill up more or less on the hour. I suppose if I am away from a wahroom for longer than that, I’ll have to control my fluid intake. Apart from some lingering self-disgust (which I simply must overcome, there are thousands of people with bladder cancer thankful to have a stoma), I seem to be doing OK. After a few weeks, I am to see am oncologist who will decide on any future treatment. Will update when the time comes. Best regards for now.

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A short update: Following convalescence, I was assigned to the Calgary cancer clinic for chemotherapy. They invited me to participate in a clinical trial to test the effects of two drugs (Cisplatinum and Gemcitabin). I will be randomly assigned to one of two groups: 4 courses of chemotherapy now, or: 6 chemotherapy courses when .(if) the cancer recurs. I signed up, and we’ll see what happens. Best wishes to all.

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I thought I’d do another update – people like to compare notes. When I was assigned to the clinical trial, CT scans and lab tests gave me a clean bill of health. About 6 weeks later I started having pains in the pelvis-tail bone area and inability to have bowel movements. Another CT scan showed Lymphedemas, so I was put on a 6 months chemotherapy course. Morphine for pain, anti-emetic pills ($25 a shot!), cortisone and a dreadful laxative promoting either gas or diarrhea (hope you don’t read this before breakfast). Pains seem to be getting worse, pills weaker, but I’ve only had my first chemo (over 4 hours treatment – quite painless, felt ok afterwards, but turned poorly the next day).
So that’s my story for now. The doctor said he’d have to wait and see whether the therapy “takes”, ie cancer goes into remission, before giving a prognosis. Let you know how it turns out. Thanks for your words of encouragement, I reciprocate wholeheartedly.

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