There’s an article in the Guardian describing the US treatment of a woman who had DCIS diagnosed at screening, in one breast.
She went on to have bilateral mastectomy, with flap reconstruction, an autologous blood transfusion, and a stay in ITU. The author writes
” It is so confusing. What was that all about? Cancer? Really? But it was so tiny. Why was the operation so huge? Why has my body been what my plastic surgeon likes to call “completely remodeled”, at a cost of $250,000 to my insurance company, just because of what my radiologist described as “a handful of atypical cells”?”
“My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable. I wish both had been less. But given my options, I am comfortable with my choice.I wish there had been another option, though. I wish there was a way of eliminating these cells without taking out so much of my body. I wonder how long it’ll be till that option exists?”
These are good questions, but are not addressed in the article. There’s a massive problem in terms of what ‘normal’ is (the article is entitled “My 40 day breast cancer” and I think we can be safe to assume that the DCIS was not present for only 40 days.) Most of us will have something not ‘normal’ if we are put into a scanner – the very real problem medicine now faces is working out which is likely to be damaging and which should be ignored.
What do we know about DCIS? We know that ever since we started screening for it, rates of diagnosis have increased. We know that many surgeons have been very concerned about overtreatment – there has been a large movement away from mastectomy since trials showed that lumpectomy and radiation therapy was as good for localised DCIS . We should also remember that survival after DCIS is close to 100%. It’s also clear that the oncology community are concerned as to whether DCIS really is cancer or a possible pre cancer. In other words: lots and lots and lots of doubts.
Is the best response to remove both breasts – both the affected breast and the unaffected one? I’d be surprised if this would be offered on the NHS. It begs the question about how far we should go with trying to prevent disease using surgery – should we remove our ovaries and wombs too, ‘just in case’, even when the organs are healthy and we are at normal genetic risk of developing disease?
There’s an problem in that doctors may be asked to perform procedures which are unnecessary, but where a ‘customer’s’ rights holds trump. This may be fine as long as there are no wound infections, post operative deaths, or mental health sequelae. But of course there are, and the history of medicine doing harm is long and humbling. The other massive threat is to medical professionalism; the need to do what is based on evidence rather than balance sheets. This excellent article from Boston, by Arnold Relman, says it clearly; ” The vast amount of money in the US medical care system and the manifold opportunities for physicians to earn high incomes have made it almost impossible for many to function as true fiduciaries for patients.”
As the NHS begins to be fractured, and people are encouraged to shop around for what they consider best, I’m concerned that the guidance from NICE is going to be usurped by offers of overtreatment. It’s easy to think that more treatment must be better and to blame NICE for rationing, rather than deliverers of the evidence. For who are patients to believe? The bottom line is that patients should be able to believe professional doctors. But, as Relman asks, do doctors whose bottom line is an accountancy balance sheet merit that trust?