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BIA ALCL

HJK
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Hello,

I'm new to this forum but would appreciate any help and/or advice on this subject matter if possible. 

BIA ALCL has only very recently been brought to my attention as early as just two weeks ago. Since then I feel I have read and digested every bit of information I can find on this strain of non Hodgkin's Lymphoma.

 

My reasons for doing this are so; in 2007 I had my first breast augmentation surgery, these were round textured Allergan BIOCELL implants. My left implant ruptured badly so I had replacement surgery in early 2012. These implants were replaced with Allergan BIOCELL textured implants. Within six months I had capsular contraction in my right breast so in late 2012 I had my third breast operation to replace the implants again like for like - Allergan BIOCELL textured implants were used again. So three sets of Allergan textured implants to date. Ever since my rupture years ago I have had very prominent and enlarged lymph nodes in my left armpit and in my left breast. I developed pain and discomfort down my arm and in my left breast in 2016 along with new lumps. I paid to see a private breast consultant immediately who examined me with concern and performed an ultrasound on the affected area. He told me that the lymph's in my armpit and breast were full of silicone and and that some of the lumps were part of the capsule. He felt happy that he could not detect anything sinister and so we were sent away reassured that I had nothing to worry about. Since then the pain and discomfort has continued and so I just persevered with it. A house move and a third child later I am only now getting round to relieving my body of the discomfort I have been experiencing for the past three years! I now have enlarged lymph nodes in my right armpit as well as my left and suffer pain and discomfort every day. I saw a cosmetic breast surgeon two weeks ago, who after hearing my history informed me of BIA-ALCL. I was horrified to learn about this and how many cases have gone undetected and undiagnosed due to the wrong tests being undertaken or no tests being taken. This year I have been to my doctors a few times due to dramatic weight loss, as I have lost almost a stone in weight over the period of a couple of months when I really can't afford to. I'm also unbelievably fatigued and ache all the time but I always put that down to having young children. Since reading the symptoms of BIA ALCL it's hard not to make them fit like a glove to what I've been experiencing and how I feel.

 

I have since contacted the breast consultant that I saw back in 2016. I have an appointment with him tomorrow evening. I am going to ask that another ultrasound be carried out and a biopsy of any fluid (if found) and a needle biopsy of my lymph nodes to be taken and tested for CD30 and ALK. 
 

Please can you advise me if there are any other testing methods I should also be asking for when I see him? I did read from the most recent FDA report that they now recommend biopsies of the capsule be taken to be tested also. Did anybody have this done too?

Any help and advice would be very much appreciated. I apologise for my long post. 
 

Thank you in advance.

HJK x

  • No need to apologise for the length of your post Hjk, as that is what the forum is for :)

    How did you get on with your breast consultant yesterday? I hope you were able to get them to carry out your requests but if it didn't quite go as planned then do be sure to get in touch with our cancer nurses as they may be able to help. You can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph

    Hi Steph,

    Thank you for your message. The consultant listened to me and went on to tell me how rare this is and how back in 2016 he didn't feel it was a concern and still doesn't feel it to be a concern for me now.

    Regardless of this I had another ultrasound carried out which didn't show any seroma around the implant but did show silicone outside of the implant and many swollen lymph nodes which appeared to be also full of silicone. As there was no seroma present he said he couldn't do a biopsy. I'm aware that seroma hasn't been present in every case diagnosed and informed him of this but he seemed disinterested in that. So I was left with little options after that.

    Im more sore than ever with the pain going up into my neck in the left side and all the way down my left arm as well as the constant ache in my left breast. 
     

    I've just booked in with a different surgeon for mid November to have my implants, capsules and lymph's in my armpit removed. I'll meet him on Monday and will request they be sent for testing, then only will I have peace of mind either way. It will be my 4th breast operation in 12 years so I'm quite anxious to say the least. I know the capsules can be quite stubborn to remove from behind the muscle wall. 
     

    Thank you so much for the telephone number you provided.

    HJK xx

  • Offline in reply to HJK

    Hi, I've just found this thread on a google search of BIA ALCL - my story is similar to yours to start...I am waiting for an MRI after pushing for it with the breast care consultant. 
    im sorry to hear you have been going thru this! 
    Have you any update on yours? 

  • Offline in reply to cjh83

    Hi, I'm new to the forum and looking for any advice on BIA ALCL. I am awaiting tests this week in the breast clinic. I went back to see my surgeon recently who said I have a grade 4 capsular contracture and I have been having pain, swelling and night sweats. I found it difficult to get my GP to take me seriously and make me a referral as I feel she was very condescending about the fact that I'd had cosmetic surgery. Looking for any advice on what to expect or what to insist they test for. I'm extremely nervous as I lost my sister very recently to Cancer that had spread throughout most of her body silently and she passed away within a few days of having her first scans. I'd never heard of ALCL and I'm extremely anxious given my recent family history. 

    I have also been having other long term neurological symptoms ( migraines, facial palsy on both sides, trigeminal neuralgia and pains in legs and feet ) that I've yet to have a proper diagnosis for and my surgeon suggested they could be down to BII. After reading what I can find on ALCL it's hard not to attribute them to it. 

    TIA 

  • Offline in reply to anniemac

    Hi there, 

    my story is really similar and I am currently waiting for ultra sound results, the sonographer said I had enlarged lymph nodes and so I am so scared this could mean I have BIA ALCL and that it has spread from the capsule to my lymph nodes. Can you shed any light or give any advice? I'm shaking writing this, never been so scared in my life.

    I hope your results and outcome were good and that your ok 

  • Offline in reply to DKOE

    I'm so sorry to hear you're going through this. ️

    It can be a really scary and lonely place to be in, especially given the rarity and I feel the stigma around this patrticular illness. I hope your results come back clear I had my scans last week and no fluid was present to test I was told ( swelling had gone down by the time I got seen  ... it comes and goes. Typical for anything I've found, that by the time you get to see a doctor your symptoms are fading ) I joined a group on Facebook -ALCL in women with breast implants - it's got really helpful members and lots of informative data. I'd really recommend it ! 

    For me personally I'll not have peace of mind till I get an explant and have my capsules sent for testing. I'm on the surgery waiting list ( privately - it would be 6/7 years given covid etc on the NHS I was told ) for surgery in the coming weeks Though I'll likely have to leave part of the capsules in I was told, so IHC testing of the capsules will be the only thing that gives me true peace of mind. 

    I truly feel for what you're going through at the moment ️ and will keep you in my thoughts hoping for a positive outcome  Xx 

  • Offline in reply to anniemac

    Thank you so much for your reply. It is such a scary and lonely place, it feels like once they know you have implants their perception of you changes. 
    That's good there was no fluid on your scans, hopefully that is a good sign, the sonographer didn't mention there was any fluid, just the enlarged lymph nodes in my left armpit, since the scan I have now found one in my right breast, do you think it is likely that I have it if I don't have fluid around the implant but do have enlarged lymph nodes? It's so confusing. Are they doing any further tests on you? 
    Thank you for your advice on the fb group, I have requested to join it. 
    I want mine taken out too, ASAP, so if I'm lucky and my scans are clear I will be going privately too, do you know how much it costs roughly to have them out? And do they remove the capsule aswell? Also what is the IHC testing that you mentioned? 
    sorry for all the questions, Ian's thank you again for your response xxx

  • Offline in reply to DKOE

    I couldn't tell you anything to be sure ... from what I've read of the stories of the women on the FB group, there are many ways that this can present. Scans can show no fluid or enlarged lymph nodes and yet capsules themselves can still test positive. And women with lots of symptoms have also tested negative.  IHC is immunohistochemistry where they test the capsule tissue or any fluids present for a thing called CD30 and that's the main way of determining wether or not you have it. 

    As I said I'm grateful my scan didn't show any obvious abnormalities but true peace of mind won't be until I've had my capsules tested, especially as I've been warned that the capsule on the right will likely only be able to be partially removed. Did you have a biopsy taken of the lymph node in your armpit? If so I would assume that IHC would be done on it.  Ask at your next appointment. It's such a worrying time I totally understand and am glad to be of a little help .. I'm no expert but I found that just knowing someone else knew what I was feeling took the edge off my own nerves. 

    Im not sure about a price for surgery. My surgeon couldn't  give me a price as it doesn't fit into the normal surgery packages, it'll depend on what he finds when he operates and how much aftercare I'll need. I was told to expect a 3/4 night stay this time round and that I'll have drains from my breasts as it's a more complicated surgery than a regular explant. And the laboratory costs to have my capsules tested also ... but your healths your wealth as they say ! 

    Youll find much more knowledgeable people than me on the FB group and I hope you get some answers soon. I'm happy to try and answer anything I can for you also .. ️ Xx 

  • Offline in reply to anniemac

    Thank you again for replying. Your right it does help a little to speak to someone else who knows what your going through. 
    When is your op booked for? And how come they only be able to remove part of the capsule in the right? I bet it will be such a relief to get them out and have the capsule tested so you know for sure. I think I will be going down the same route as you if I get told by the consultant that I don't have it (dependent on results of these lymph nodes) it's best to know for sure isn't it. 
    I had an ultra sound but no biopsy, I should hear tomorrow how things will proceed once consultant has viewed my scans, and so it's possible they may do a biopsy, I hope they do but I'm also really nervous that if they do it's because they have a reason to be concerned. 
    And I will ask about ihc and CD30 aswell, thank you for the advise on that. 
    thanks again so much xxx
     

  • Offline in reply to DKOE

    Do you have a capsular contracture also? How long have you had your implants? Mines is a grade 4 capsule so it's a possibility part of it may be too well adhered to my ribs and lung to risk fully removing. If it can be all taken out he will do so. Partly also why I haven't a set price for surgery yet. It's a case of depending on what they find and how long or complicated the surgery will be. 

    I hope you get good news tomo ... it's a very unsettling time for sure. I'll keep you in my thoughts tomo

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