Why gamble with breast cancer?

http://www.guardian.co.uk/commentisfree/2012/oct/30/why-gamble-with-breast-cancer

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In April last year I had a mammogram in New York that was not normal. There had been "some changes" I was told, nothing more specific than that. I was asked to come back in December for another mammogram "just to be ultra-cautious".

That "ultra-cautiousness" led to a second mammogram, two biopsies, and a bilateral mastectomy which I subsequently wrote about for the Guardian.

It was a brutal ordeal, full of complications and setbacks. Almost nine months later I'm still recovering. Before my surgery my American doctors gave me as much time as I needed, and as many explanations as I asked for, but they still didn't give me the full picture. I was never told about fluid buildup, or weird lumps, or infections – all of which I suffered. They never described the enormity of the scars or how devastating the whole experience could be. They didn't talk about months of overwhelming fatigue. Instead, they painted a rosy picture of a brand new set of beautiful breasts that would be cancer-free for ever.

It's the "cancer-free" that fills me with comfort now. I knew the statistics at the time. I knew that 50% of DCIS (ducal carcinoma in situ or non-invasive cancer of the milk ducts) didn't grow, or grew so slowly that the chances of it killing a patient were minimal.

But 50% of it does grow, it does become invasive. Do you want to play those odds? I didn't. Treatment at the DCIS stage – when caught as early as mine – requires surgery only. My surgery was extremely rough, but it was not followed by radiation or chemotherapy. When they removed my breast tissue, they didn't just remove the few atypical cells they had found, they removed my need for further screening and further treatment. And far more importantly than that, they removed my fear.

Today's report, jointly published in the Lancet by the government and the charity Cancer Research UK, on the possible harm done by over diagnosis in early screening, mentions "cancers detected at screening that would not have otherwise become clinically apparent in the woman's lifetime". To me this is the report's crucial phrase. How can doctors possibly know those cancers won't become clinically apparent? What are the odds? I ask you again, would you like to play them?

The report says: "The major harm of screening considered by the panel was that of over-diagnosis … The period between detection of a cancer at screening and when it would have presented clinically is the lead time and is an inevitable part of screening."

Is this over diagnosis? Or is it early diagnosis? By the time breast cancer presents clinically, it's the lump in the shower kind. It's invasive, probably in the lymph nodes and far more dangerous.

I will never know whether or not my handful of cells would have grown into invasive breast cancer, but nor does any doctor. We are still far from that kind of prognosis. In the interim, screening doesn't just save lives, it saves money. A mammogram isn't cheap, but is far cheaper than weeks of chemotherapy or radiation, multiple surgeries, and continued screenings that invasive breast cancer requires.

In its conclusion, the report says it "believes that over diagnosis occurs". It goes on to address my kind of breast cancer specifically.

"Although ductal carcinoma in situ can be associated with invasive cancer, and therefore can be a marker of malignancy, it can also relapse. For example, in the UK, Australia, and New Zealand trial, after wide local excision of screen-detected ductal carcinoma in situ, without any further treatment, relapse in the breast occurred in about 19% of cases, and was invasive in half of these cases."

After my mastectomy the breast tissue was analysed to see if the cancer was invasive or not. I was told there was less than a 10% chance of that being the case. I was still in hospital at that point. The analysis took five days, which were the worst five days of my life. Less than 10% was still way too high for me. I felt insane from fear. Invasive meant chemotherapy, it meant telling my two daughters something very frightening, it meant the odds would be different again.

No doctor "knows" what any cancerous outcome can be. My doctors couldn't predict the problems I suffered post surgery, but they made sure to tell me beforehand that 98% of women sailed through mastectomies with no complications at all.

I was one of the 2%.