Dear Dan,

I was diagnosed with bladder cancer in August 2005, grade 2 stage 3 – multifocal but MRI showed no visible metasteses. My urologist suggested cystectomy but gave me a couple of websites to look at  – knowing I would trawl the net anyway he wanted me to see the best sites available. When we met again I said that I did not want to sign up for a cystectomy (with all of the possible consequences that he made clear were risks that he could not exclude) and wanted to know more about the alternatives. He said that an oncologist from Scotland’s major cancer hospital and research laboratory made a weekly visit to his clinic and that he would show her my file. He rang next day to say she thought I was " a suitable case for treatment" and gave me an appointment to see her.

We talked at length and she said that it was worth commencing a course of chemotherapy and radiation which would spare my bladder. When I mentioned that American practice recommended cystectomy she said that in Europe the statistics showed no clear cut ‘gold standard’ as the disease was complicated by primarily being a disease of older men who would react badly to either major surgery or chemotherapy, and so they made the figures unreliable either way. As I was relatively young, 59, and in otherwise good health then chemo and radiation offered a ‘cure’ (I later discovered this meant survival to five years – but it still sounds good).

Six weeks after the initial diagnosis I started treatment. I was booked for four three week sessions of chemo, cisplatin and gemcitabine, one 12 hour session followed the following week by gemcitabine alone (one hour) and then one week off. After two weeks I was scheduled for a cystoscopy and was told that the tumours had gone but that my bladder lining was red and inflamed (?) where they had been.

I finished the chemo and then started radiotherapy, twenty sessions over four weeks. I was enrolled in a trial where for the first and last weeks of the radiotherapy I also received a constant dose of a different chemo, injected by a pump and a line into my chest.

I didn’t find the chemo a big problem – the steroids made me so high that I found myself ravenous and keen to work – either in the office or the garden. The day after the 12 hour shot I felt a bit rough – like the hangovers of forty years ago – and food and drink tasted unpleasant. Different folks have different reactions. Radiotherapy made me very tired – particualrly about six months after the course finished.

My first scope after the end of this treatment showed no sign of the tumours – a few tender patches but no lumps or CIS. A tendency to bleed regularly and profusely meant that my scopes have been every three months or more often since. The bleeding has now been traced to BPH and I am on finasteride etc to control that. My bladder and the whole of my urinary tract – urethra to renal pelvis is free from tumour and my doctors seem very pleased.

The more I read about BC the more I think that treatment depends entirely where you live. In the States, the surgeons seem to control the treatment and their insistence that cystectomy is the only cure holds sway. the cynic in me wonders whether this has anything to do with the economics (i.e. salaries) of the US system. Reading the various blogs here show that cystectomy does not automatically eradicate BC but its consequences are a whole lot more insidious than bladder-sparing treatments.

In Europe, where medicine is less directly connected to medics’ incomes, there seems to be a more open-minded attitude to the alternative therapies – and I don’t meant coffee enemas but chemo and radiation.

I feel fine on the whole. I take things a little slower, I enjoy more holidays and time with my wife, I’m a little bit cranky about odd twinges and do on, but my surgeon, who is the only guy to have seen the five or so cabbages in my bladder, seems to think I’m fine too. I know BC often comes back, but the regime of regular cystoscopies here should catch it in the bud (or at least at CIS level).

So my advice is talk to an oncologist as well as your surgeon. Talk to several of them if it helps. I’m not sure that getting a second or third surgical opinion will solve your dilemma – you’ll just get a different take on the type of solution available under the knife. Oncologists deal with cancer every day. They know what is possible and what is hopeless. I see lots of guys at my clinics who have had either surgery or chemo – the chemo ones are happier with their lot.

{Dan Bjorkman Comments below}

Dear Toshy,

Thanks for sharing with me your history and struggles with the disease, this is kind and thoughtful comments and helps in reconciliation of the unfortunate choices we BC patients have to suffer with. 

You may be right about the American medical systems motivations behind the dollars.  After several months of meetings, 3 courses a chemo and dialogue with more BC patients, I have to say that I think that the Mayo, is steadfast in the belief that RC is the only cure that they know of.  My Oncologist, and Urologist both believe that without the surgery I have less than 5 year life expectance and according to Mayo and John Hopkins (20 year stats) it more like 24 to 36 month, the one thing they are certain of is it will return it just a matter of time. They also do not ever recommend radiation because of damage to the bladder and loss of elasticity, the also have mentioned a high probability of getting rheumatoid arthritis as a side effect, which a cousin of mine just got that did a similar process as you with chemo and radiation.

When they did another CT scan with Iodine last week, they found some new hot spots in my lungs, and prostate and pancreas.  But all sign of tumors in my bladder are gone.  They have said they really need to biopsy some of my nymph nodes and lung spots to confirm of deny the cancer and how aggressively it may be spreading, I am not sure at this point if surgery is even still on if it spread to my lungs and other organs. 

As you can tell from the flavor of this email, I am still leaning to RC surgery, but very cautiously and not too optimistically.  I have not found another MD here in the US to state the Mayo is on the wrong path here. 

In any event, thanks and let’s keep in touch from time to time.  I’ve always wanted to play golf over there.