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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

  • Offline in reply to CMW

    Thanks for that information, it's so helpful to have people like you who have been through it all! I went to my GP and will have a breast clinic appt within 2 weeks to get this lump checked out. I will bring along the NCCN documents - is it mainly the flow chart I need? I think that's what worries me, because they know so little about it I'm scared they'll miss something! 

    Regarding the implants, I think I need these textured ones out now just for peace of mind sadly! I'll deal with the lump first, but if that's all clear I'm hoping to find a surgeon to get rid of implant and capsule and swap it for a smooth implant (no huge rush of course) 

    Does this just carry the normal risks of surgery?

     

    I hope you're well and recovered 

    xx

     

     

     

  • Offline in reply to CMW

    Hi all 

    I'm new here. I was wondering if you could share with me what your symptoms were for ALCL? And what your swelling looked like. 
     

    I have textured nagor implants. For a week or do I've have pain in my right chest and back. My implant is also looking strange... it's very soft snd squishy and when pushed down itcramsins depressed for about 10 seconds. I'm going for an ultrasound but I can't get I've got a week snd I'm very nervous about it being ALCL. I'm barely sleeping at all  

     

    I've had ruptured implants in the past and already have silicone in my lymph nodes. 
     

    thank you got your help 

    sarah 

  • Offline in reply to Maisym00

    Hi Maisym00,

    Yes, the flowchart is one of the key documents. 

    On your questoin on whether explant carries just the normal risk of surgery, research varies and there a few different sets of findings. Some research suggests that having surgery increases the risk of disturbing the area e.g. by potentially problematic cells being released from the capsule. The general consensus seems to be that until a woman is symptomatic, the preferred approach is to leave the iplants in and monior closely for any changes. 

    Where expant is needed, some doctors advocate that symptomatic patients should have a total capsulectomy at the time of implant, i.e. removing the whole capsule with the implant still inside, all at once, to prevent any of the fluid leaking into the body. This is a much riskier and invasive surgery and requires a skilled oncological surgeon because the capsule can get stuck to the ribs and the surgeon potentially needs to operate very close to the lungs. The increased risk of this type of procedure requires careful consideration of the pros and cons. Other research suggests that removing the capsule, even if in pieces i.e. bit by bit, is suffieicient to mitigate the risk of developing (or treating) BIA ALCL.  

    Until you know what this lump is, you don't know if you're symptomatic or not so it's impossible for you to weigh up the pros and cons or whether to have an explant right now, or how the explant would be done. Also, I'm not a doctor and my understanding is limited. Every patient has their own set of circumastances that need to be discussed and agreed with medical professionals. 

    Good luck at your appointment. Do as much reading as you can in advance so that you're informed. The Facebook group "ALCL in women with breast implants BIA-ALCL" has an absolute welath of experience and is a great place to start. You're doing everything right by going prepared to your breast clinic appointment with all these questions. You've got this!
     

     

     

  • Offline in reply to CMW

    Hi 

    I've been reading these posts with interest after googling ALCL which I must admit I never knew about until recently. 

    I've had my textured implants since 2003 and last year experienced tenderness and hardening around my left breast. I immediately thought my implant was rupturing and after contacting my GP was told I needed to go private as this wasn't something the NHS would cover! 

    Anyway after a private consultation a mammogram and ultra sound the specialist said the implant was intact and any hardness and lumpiness was due to capsular contraction and unless it was bothering me it wasn't a problem. 

    About 3 weeks later I noticed a visible rubbery lump about size if pea on the side of the breast.  thought anything sinister would have shown up on the scans but booked an appointment to see a surgeon to talk about replacements. He advised to wait and see how I felt at the end of the year as he didn't feel the implant was that bad to warrant surgery, he wasn't concerned about the lump given I'd had a scan in the past couple of months. 

    Moving forward the capsulation is worse and the lump is more visible (not sure if the tightness is making it more noticeable)  I get pain around the side of breast where the breast is more hardened so went back to see the surgeon who confirmed it was worse and went through the procedure for replacements with me saying he'd probably use textured as he thinks that's what was probably used previously and is better for replacements. He explained the slightly more risk of certain cancers but he thought that it was acceptable since I have had the original ones in for 20 years without problems. 

    This is where Google comes in  after hearing the word Cancer, I convinced myself that I  have all the symptoms of ALCL except the swelling. 

    I emailed the surgeon my concern about replacing with textured implants  and said I was concerned about the lump. At the same time I confirmed the make and size of the original implants. (Silimed  - made in Germany) He's now advised me to book in with another specialist to get a re-evaluation (although he said he was sure it was nothing) 

    So today I managed to see a lady GP who has requested a 2 week referral after assessing me ( she couldn't say what it was but there was a lump and hardeness ( which I knew already) I go on holiday for 2 weeks tomorrow ( been waiting for this Caribbean cruise for 2 years and now I'm going to be worrying the whole time but I suppose rather worry in the sun than here in the cold. I've also booked a private appointment for when I get back in 2 weeks just in case the appointment comes before I get back. 

    Sorry for the long story but it helps to tell someone that knows what I'm going through. I'm just worried that something was missed in the first scan and I've had a problem for over 8 months without knowing 

  • Offline in reply to CMW

    Hi All,

    I woke up last week and both my breasts on either side near my ribs hurt like I'd done a big chest workout at the gym. I went to the Dr a few days later as both sides were swollen, there is no redness or itching and they arnt hot so I don't think it's an infection. They arnt rock hard but they are noticeably bigger. 

    I called my surgeon and he said my implants (2015) are textured and that there is a risk of this type of cancer which I hadn't heard of. I have health anxiety and now I'm in major panic mode. My Dr has been good and referred me to the breast clinic and I had full blood tests done today. 

    A few questions- can blood test pick up abnormalities with this type of cancer?

    Is it common for this to suddenly appear and in both breasts at the same time? 

    I guess I'm looking for reassurance. I have also requested to join the fb group.

    Thanks

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