ALCL – how do I know if I may have it? What does it look like? What should I do?

I wanted to write a blog to talk about BIA-ALCL – breast implant associated anaplastic large cell lymphoma.  There is a lot written about it in the media at them moment (and rightly so) but unfortunately I see a lot of inaccurate reporting and understandably lots of worry is created.

BIA-ALCL is a rare form of lymphoma (cancer of the immune system) associated with textured breast implant surface. To date, no causal relationship has been found – i.e. we do not know if textured breast implants cause ALCL, but we do know that in all cases of BIA-ALCL so far, the patient either has or has had a textured implant in place.

Not all texturing is the same – it seems that the rougher the texture, the greater the association. In my practice for many years I have predominantly used Mentor (Johnson & Jonhson) breast implants, which have microtexturing, in other words, fine texturing. The best estimate for the development of BIA-ALCL with Mentor textured breast implant is around 1:86,000, so fortunately, very unlikely. Furthermore over 90% of cases are cured by removal of the breast implant and surrounding capsule (scar tissue).

So…how would you know if you were developing BIA-ALCL?

The most common symptom is spontaneous breast swelling (usually one but can be two) normally at around 8-years after the implants were put in. Therefore if you notice one of your breasts starting to swell, please seek medical attention straight away. There are benign causes of breast swelling too, so just because your breast starts to swell, it does not necessarily mean you have developed ALC. In fact, the last 3 patients I have seen with this symptom all proved to have benign underlying causes.

Sometimes patients present with a lump they have found, so it is important that you regularly check your breasts for lumps once a month, as normal.

What happens if I have a swollen breast?

The first thing, as I mentioned above, is to seek medical attention – either come back to see me or see your GP. After a careful medical history and clinical examination, an ultrasound scan may be organised. This is useful for two reasons – the first is to identify whether there is fluid around the implant causing the swelling; the second is to enable a needle to be introduced to take a sample of the fluid to be sent off for testing.

There are very specific tests for BIA-ALCL that can be done on any fluid that collects around an implant.

What happens if the fluid comes back diagnosing BIA-ALCL?

If you were to be diagnosed with BIA-ALCL there would be some more tests that would need to be done, and your situation would be discussed in a breast cancer MDT (multi-disciplinary team meeting). If the tests suggest that the ALCL is confined to the capsule (which it normally is) then surgery to remove the breast implant and capsule would be planned.

If there is more advanced ALCL (which is much less common) then other treatment options as well as surgery might be suggested, such as chemotherapy and radiotherapy.

It is important to state again that this is a rare entity and by far the majority of cases are completely curable with surgery, which I hope is reassuring.