I cannot help you, as I am afraid that I know nothing about this condition.
It might be worth phoning the nurses on this site, who are very helpful and much more knowledgeable than me. It is free to call them and they are very helpful.
Hi, I was diagnosed with BIA-ALCL on Saturday. I have more tests being done on Monday but I don't really know much yet. Scans and so forth. I imagine something similar to what you mentioned above. How did it all go? It's so rare, I'm surprised to find someone else with the same diagnosis on here. C x
I am glad that you now know what your diagnosis is, although sorry to hear that it is positive, You are lucky to find Johnlilley so quickly with the same problem,
I have a rare strain of breast cancer and it took me a few years to find someone else with the same strain. It can be a lonely place when nobody seems to know about your particular strain,
I hope that the CT scans for both of you go well and that you both feel better as you start your treatments,
Hello , I'm currently undergoing results for this I've had a fine needle biopsy, my lymph nodes are visibly enlarged so biopsies taken there too but I'm getting worried now.
I went to casualty via ambulance with chest swelling and pain and had chest X-Ray's which confirmed pneumonia and the lymph nodes .
My biopsies came back initially as reactive only , since then they've shown inflammatory cells and have been sent to kings college , so I am nearly at result time , it's been nearly five weeks now and I've seen two surgeons but no diagnosis although the letter to my GP said 'current working diagnosis' ALCL but I keep being told not to worry even though my white count is out ???
Bit stressed now , v tired and avoiding the sun ( due to swelling) so I'm bored too :)
I really just wondered if anyone else experienced a long wait for results , thanks in advance x
i hope you don't mind me contacting you about your diagnosis? May I ask how you are doing? I've just had a biopsy, last Tuesday, and awaiting results of a nodular mass outside my implant. I've had silicone in my lymph nodes for several years (following previous removal of capsular contracture) and i'm worried that I may have BIA-ALCL? May i ask what symptoms you experienced?
May i ask how you got on with your scans? I have alllagan implants, almost 7 years ago now, i have hospital friday to see what is happening. I was wondering what your symtoms were? My Right breast is swollen and very painful and itchy as hell.
i had allagan implants 7 years ago also, I ALSO have a swollen right breast which is tender & hard. I sore a plastic surgeon who told me he was concerned over BIA-ALCL and has refered me to the breast clinic for prompt tests. I’m utterly terrified as I have a 7 month old baby.
Have you had any results back? Any advice would be very appreciated.
I had my scan and turns out to be capsular contracture. The main thing they look for in bia alcl is fluid on the breast and i had non. Spent 4 weeks thinking i had it and in tears. I was supposed to be referred to a plastic surgeon to discuss removal. But not had any letter yet. My symptoms were. Extreme swelling, pain to touch and lay on. Strange thing is the pain isnt as bad, but as i have testured implants by allagan i want them out regardless! 33 years old now and have a 9 year old, it really is not worth the stress :(. I really hope all works out for you and your experiencing perhaps more capsular then anything else. Here if you need me x
I was diagnosed with BIA ALCL 2 years ago and am now in complete remission with no trace of the disease. It’s very uncommon so please don’t worry yet but even if you have it, it is very treatable if caught early and the disease is still contained inside the breast capsule. Do you know if your implants were textured or smooth? So far there hasn’t been a case with only smooth implants (women have always had textured implants at some point, even if the most recent set of implants is smooth)
There’s lots of info available at biaalcl.com/.../ There’s also a great network on Facebook to go for info or for support if you’re diagnised. It’s called “ALCL in women with breast implants BIA-ALCL”. There are 100+ diagnised women in there as members from all over the world. They guided me through everything when I was diagnosed and I’m not sure I’d be here today if it weren’t for those amazing women who shared their experience and the most up to date knowledge and learnings. Unfortunately most doctors are not as informed as they should be so it’s important you’re self advocating. Please make sure the testing is done properly. The tests for BIA ALCL are very specific. The doctor needs to request the pathologist do immunohistochemistry staining for CD30 cells. They won’t be able to detect the disease unless they’re looking for those cells. All the info is in the link I mentioned above.
