Side effects you really don’t want to think about (Radiotherapy Part 3)

I know it’s seven weeks since I finished my course of radiotherapy but I really feel I need to get this off my chest. The potential long-term side effects of breast cancer radiotherapy are something else. There, I’ve said it.

At my first appointment with her, the consultant oncologist in charge of my radiotherapy explained why this treatment was being recommended for me. She talked me through the proposed treatment plan, the practicalities involved in planning treatment and the treatment itself, and, of course, the potential short- and long-term side effects. She then offered me a consent form for signing… or not. I did ask if people refused treatment. Yes, the consultant replied, but not in cases such as yours where radiotherapy has such a clear benefit in terms of reducing the risk of recurrence and improving overall prognosis. There was never any doubt that I would sign.

As with other breast cancer treatments I’ve had – chemo, surgery – or am continuing to have – hormone therapy – radiotherapy has lots of potential nasty side effects. Some are immediate, and some are more long-term and can occur months or years after treatment. If you’re familiar with this blog, you’ll be aware of some of the short-term ones: skin redness, tiredness, swelling and tenderness of the reconstructed breast, swelling from fluid build-up in the treated area, etc. The potential longer-term side effects are much scarier. That said, they’re less likely – in some cases much less likely – to occur than the short-term ones. They include shrinkage and firmness of the reconstructed breast, increased risk of second malignancy, rib fracture, lung scarring and a 10-15% risk of lymphoedema.

Let’s go through them. Around one in ten women who have radiotherapy following reconstruction experience shrinkage and hardening months or years after treatment. What a nightmare that must be. I agonised over whether to have a reconstruction or not and in the end decided to go ahead with one that involved transplanting abdominal fat and required major surgery. It was a massive deal. Nearly four months on, there are some “issues”, but it looks like the result will be good in the end. You really don’t want to wake up one day in five years’ time to find it’s shrunk and feels like concrete. The plastic surgeons, too, must hate seeing what radiotherapy does to their lovely artwork. It’s no wonder then that “with a view to improving cosmetic outcomes“, clinical trials are under way to determine whether it’s safe to do things the other way round, ie to give radiotherapy before surgery.

As for the other potential long-term side effects, well everyone knows radiation can cause cancer as well as treat it, so the warning about a “minimal risk of second malignancy” was no surprise. But rib fracture? And lung scarring? Well it seems a rare potential late side effect of radiotherapy to the breast is “weakening of the underlying ribs on the treated side“, which may “increase the risk of a fracture in later years”. I’d better be extra careful when I go skiing.

An equally rare or even rarer side effect than rib fracture is lung scarring, aka pulmonary fibrosis, which can result in serious breathing problems (guess there wouldn’t be much skiing at all then). If you’re having radiotherapy to the breast and chest wall, it’s impossible to avoid the lung. The reason I had to hold my breath during treatment was to lift the treatment area away from the lung and so minimise exposure.

Finally, with regard to lymphoedema, well I was already at risk of that anyway as a result of having had the axillary lymph nodes removed during surgery. And yes, I have developed it, in and around the breast area, but I’m hoping it can be resolved, to some extent at least.

So what else do I need to look out for now that I’ve had radiotherapy? Well, swelling caused by treatment can persist for months or even years. Also, irradiated skin may burn more easily from sun exposure and be prone to infection and breakdown, so you need to be extra careful in the sun. And here’s a nice one to finish. Breasts that have been irradiated may not grow or shrink in size as much as untreated breasts, or indeed at all. Radiotherapy seemingly freezes own-tissue reconstructions at the size they were before radiation treatment. Again, this is pretty annoying as one of the benefits of this type of reconstruction over an implant is that the new boob changes with you as you gain or lose weight. One of the main causes of asymmetry between the “treated” and “untreated” breast is, apparently, weight gain. While that’s a clear incentive to keep to a steady weight, it’s not much consolation to those women who put on weight as a result of the hormone treatment they may end up taking for as long as ten years after they’ve had chemo, surgery and radiation (or combination thereof) in an effort to guard against the cancer coming back.

I’m aware I’m not doing a very good job here of “selling” radiotherapy. Radiation treatment reduces the risk of recurrence and that is, of course, the main concern. But it doesn’t half add to the baggage that comes with having or having had breast cancer.

 

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