I would say if you have textured implants, they should be doing more to rule out BIA ALCL. While fluid around the implant is the most common symptom, not all diagnosed women have it. In fact, some have had no symptoms at all. It is possible to do a biopsy of the capsule (it doesn't hurt that much, I had 3 done!). Whilst that's not conclusive either (because it won't necessarily be throughout the capsule so it's a bit pot luck), it might give more comfort.
A PET scan is another option. Any areas that light up may reveal potential for BIA ALCL. Perhaps enough so to warrant an explant and further testing of the capsule once removed.
of course I'm not a doctor and I don't know much about breast cancer. Just sharing what I've learnt from my experience of having BIA ALCL.
I massively appreciate your input and the time every person on here has taken to reply xx I feel far less alone and I'm going back to the gp to discuss more options - thanks so much
Also I wonder if anyone can confirm whether with bi alcl they had any issues with white blood count or thyroid both of mine are very low. Would a complete blood count give alcl insight & did anyone have pain numbness or heaviness in the arm on that side? I have read so much and never read about inflamed muscles from capsular contracture? Like nowhere .. Ever .. And why nearly 8 years in would I have constant painand a capsular contracture if no rupture (according to ultra sound) surely that's grounds to investigate further?
Sorry to read about what you're going through. It's great you've done your research. You're already a step ahead of many women. BIA ALCL is often overlooked, even by doctors. I was diagnosed in 2017 and I'd never heard of it before. neither had my doctors!
Please don't worry too much at this stage. The odds are definitely on your side. Do you have any other symptoms? Swelling? Itching? A rash? Let's see what the doctor says. Hopefully it's nothing. Please keep us up to date and I'm here if you want to discuss after your appointment.
I would recommend printing out the NCCN guidelines on BIA ALCL and any other relevant info for your doctor, just in case they've never heard of it. Lots of info available at www.biaalcl.com.
