Russell's story - Chromophobic renal cell carcinoma

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Russell's story - Chromophobic renal cell carcinoma

Postby russjones » Sat May 28, 2011 9:37 am

Hi everybody,

I'm Russell, 40 years old (formerly) healthy non-smoker from Manchester, England. I was recently diagnosed with chromophobic renal cell carcinoma, a rare cancer of the kidney. In my case the tumour was in my right kidney, and showed absolutely no symptoms until 14 April 2011.

I woke that morning and found blood in my urine. I called my GP (family physician, for those unfamiliar with British medical terminology), who saw me later that day, and referred me to the urology dept of my local hospital. At this stage I experienced no pain and felt perfectly healthy. But 20 minutes after leaving my GP I began to experience severe abdominal pain, so bad I couldn't walk or speak. I was rushed to hospital, given morphine, and a catheter which relieved the pain. I later discovered the blood in my urine had clotted in my bladder, causing severe spasms - that's what caused the pain.

At this stage doctors seemed sure I had a kidney stone which had cut my ureata, causing bleeding. But a scan, to find the stone, instead found a large mass. Very large indeed. I was scheduled for surgery on 15 May, but my bleeding didn't stop, so the surgeons brought forward my operation to 27 April.

All went well, although the size of the tumour necessitated a huge incision - 36cm (13 inches), almost 1/2 of my circumference. And the tumour weighed 7kg (15lbs). I'm still struggling to move around much, as the wound is still very tender.

I was sent home 4 days later, having had extraordinary care from the good old NHS. I'm sure people on this forum will have their own tales to tell, but my experience was amazing. I cannot fault the NHS at all - 11 days from diagnosis to cure.

I say "cure", although that's not certain. But the histology showed I have chromophobic renal cell carcinoma, a rare kidney cancer. Only 0.8% of kidney tumours are chromophobic. It's only been a recognised cancer since (I think) 2003, and statistics for prognosis are scant. I had either stage 2 or 3, it's currently unclear. My surgeon (fortunately for me one of the best in Europe) was confident it hadn't breached the kidney, which means I'm likely to be stage 2. And the indications are that radical section (cutting out the kidney) of stage 2 is "curative" - good news if it's true, but the research isn't yet strong enough to offer any degree of certainty.

I'd love to hear more from anybody with a similar diagnosis, and am more than happy to talk to anybody who I can help. I'm not prone to being gloomy or introspective, and I tend to be a bit of a geek - I find knowledge more appealing than emotion (but that's just me - I'm not here to tell you how to respond to your own circumstances). So I'm sure I'll be sympathetic and supportive, and generally as positive and philosophical as I can be. But be warned that I'm the polar opposite of Oprah or Lady Di - I don't do hugging or crying, and definitely don't do "feeling sorry for myself". It's just not who I am. Much more interested in the science and practicalities - I think that's the best way to get things done (just my opinion).

That said, I welcome all comers!

Posts: 1
Joined: Fri May 27, 2011 5:49 pm
Cancer Diagnosis: Chromophobic renal cell carcinoma
Relationship To Patient: Self

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