Sorry to hear. I was diagnosed with BIA ALCL in 2017 and again in 2018.
Do you know if your implants are textured or smooth? So far there have been no cases in patients with a history of smooth only implants/devices. If they're smooth, you can be much less concerned about BIA ALCL.
If they are indeed textured, the breast specialist will need to rule out BIA ALCL because swelling is a common symptom. If you have fluid, this should be through an ultrasound guided aspiration where at least 50mls of fluid is needed in order to perform the very specific BIA ALCL tests (connected to CD30 cells). This test needs to be communicated clearly to the pathologist.
A swollen breast and/or lymphnodes is certainly NOT always BIA ALCL. There are lots of other reasons this might be be happening. BIA ALCL is very uncommon but if you have textured implants, it's sensible to rule it out.
Please go to biaalcl.com for access to a lot more info, included the NCCN Guielines which sets the protocol to follow for testing and treatment. Perhaps you can print this out and take it along with you to your appointment? Hoipefully the breast specialist is up-to-date but unfortunately, I've seen in many cases that the patient needs to be prepared to eductae the doctors on BIA ALCL.
Hope you're well! I hope you don't mind, but I just wanted to correct a little piece of your message. I'm not a doctor either but where you say, "I understand that not all cases of BIA ALCL turn out to be cancer.", I don't think this is quite right. If a person is diagnosed with BIA ALCL (breast implant associated anaplastic large cell lymphoma), they absolutely do have cancer. BIA ALCL is a cancer diagnosis.
Perhaps what you mean is that not all people who have BIA ALCL symptoms end up being diagnosed with BIA ALCL?
Many thanks for correcting me. I certainly meant that not all people with BIA ALlCL symptoms end up being diagnosed with BIA ALCL. What I meant to insinuate is what you said - 'A swollen breast and/or lymphnodes is certainly NOT always BIA ALCL'. There are lots of other reasons this might be be happening'. I am glad that you picked up on this, as I certainly don't want to give any incorrect information.
Thank you for getting back to me and I am sorry to here you had to go twice through this. I trust youIyou areware ok now. I went to the breast clinic today. The doctor checked my breasts, then ultrasound was done. They couldn't find any abnormality just a tiny cyst. So the doctor didn't do any test! I explained him I were on antibiotics for one week 500mg 4 times a day, so I might have had a series and it just disappeared after antibiotics as breast returned to the normal size now. But as they haven't found anything the doctor refused to do any further checks. They said there is even no capsular contracture. So on the one hand I am feeling relieved, on another hand the question about bai accl is still unanswered. I am planning to take the implants out as soon as possible, hopefully in July and then I will ask a surgeon to check for this.. if it comes back positive- is there anything else I need to do? Any blood test? Do I need to be referred to the breast specialist to check if everything is ok on the regular basis?
May I also ask how did you find out that baiaccl came back second time? Did you take them out without the capsule first time?
I am really feeling lots of ladies could be misdiagnosed. I felt generally unwell, one breast was bigger than another , limf nodes were enlarged as well so of course I was prescribed antibiotics. But by the time I had an appointment everything went back to normal..I believe it should be the same day referral before a person starts taking antibiotics... Or usually the ladies don't take antibiotics when one breast got swollen? X
I can understand that, but remember that you may yet find that you don't have BIA ALCL.I am sorry about how you were treated at the breast clinic today, but I do still hope that they are right and that there is nothing to worry about.
It would certainly be wise to get your surgeon to check again in July, if for nothing else, just for peace of mind.
The first step is to understand if you have textured or smooth implants. This is a key piece of information as if they're smooth, you don't need to be worried about BIA ALCL (if you've had more than one set, you'd need to check previous implants weren't textured either).
If they are textured, please don't be in a rush to remove them as there are specific steps that need to be taken beforehand to help guide the surgeon e.g. a PET scan to determine if there is unusual cellualar activity detected in certain areas of the capsule. AGain, only if your impants are textured, an oncological surgeon should perform the capsulectomy that accompanies the explant, and not a standard cosmetic surgeon.
Really, before you even need to think about all this, please find out what type of implants you have. All this worry might be for nothing.
If they are indeed textured, I will help you get the message through to your breast surgeon.
