have been reading this thread with a lot of interest.
I found out a week ago about this issue and to be honest, am in a bit of a state over it. I have had alleged implants since 2012 and have recently had a lot of pain in my left breast.
whilst I did have the implants placed privately, I'm now divorced and not in a financial position to use this route.
ive actually just come from my GP, who was if I'm honest less than sympathetic. She informed me that in no way would the NHS remove any implants that were not placed my them. Whilst I tried to explain that it was a specific, rare type of lymphoma caused by the implants, she stated that it wasn't the nhs problem. I explained, repeatedly that I was not in a financial position to see a private doctor, not only that, the surgeon who I used was no longer in this country and the company had closed down. Howver she still insisted. I actually said, well so I just wait and die then? She looked at me in disbelief and said that pain was not a lo indicator of lymphoma so I was probably ok. despite trying, again, to say that this was a rare type and in fact pain was one of the first symptoms. She was very dismissive. She said that the breast clinic would see me but Would only deal with the problem and treat that. I said that the treatment, of necessary, was just that. Removal of the implants. I left shaking and distraught, with a referral to a clinic where I really don't know if I can receive help or if I'm going to get more of the same attitude.
Welcome to our forum. I am so sorry to hear of the position that you find yourself in. This must be extremely frustrating as well as worrying.
I sincerely hope that the staff at the breast clinic are more understanding than your GP and, that they can do something to help you.
There is a gentleman on this forum who is our 'oracle' on NHS matters. As an ex NHS manager, he can give us sound advice on many NHS conundrums. His name is [@davek] and I am sure that he might be able to shed more light on your position vis-à- vis further surgery on the NHS.
Do please keep in touch and let us know how you get on. We are always here for you.
Thanks so much for your reply and your kind words. I'm sorry, Ive never used a forum before so didn't really have any idea what I'm doing. Do I just include. [@davek] name to this thread or contact him some other way?
I am really sorry that you have been having a lot of pain in your breast. Hopefully you will find a more reasonable and understanding person at the breast clinic.
I was also sent to the NHS breast clinic by my GP. The suegwon told me that the NHS would remove implants but not reimplant new ones. If you want to remove them, I think it should be covered. Don’t panic with what your GP says as they are not the specialist doctors that would dealing with it.
Sorry to hear you've been going through this. I can relate first hand as I experienced the same from my GP. It was a sad realisation for me that many have absolutely no idea what they're doing and we hve to be strong self advocates. Sounds to me like you got a good outcome with your referral so well done.
On the BIA ALCL, I was diagnosed in 2017. As you're aware, it's uncommon (but emerging) so please don't worry too much yet. Do you know if your Allergan implants are textured or smooth surfaced? It's only the textured ones that are problematic as far as we are aware so far. So you have any other symptoms apart from pain? The most common symptom is swelling/fluid around the implant but not all women have that and indeed some women have had no symptoms at all.
If your implants are indeed textured, step 1 for you is to have the breast clinic perform testing to rule out BIA ALCL. There is a lot of info available here: https://biaalcl.com/ Please print out the NCCN guidelines and anything else you think useful and take it along with you. Hopefully a breast specialist has better knowledge on BIA ALCL risk but unfortunately it's not always the case.
So no need to worry too much yet. And in the worst case and you're diagnosed, it's normally very treatable and is all funded by the NHS.
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 also suffer from night sweats, am unbelievably fatigued and ache all the time but I always put that down to having young children and being worn out. 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 this 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 both for taking time to post. Apart from being most helpful, this is the first place I feel taken seriously.
My Allergan implants are textured and, whilst I haven't noticed any swelling, I've had pain and tenderness in my left breast for a while. I actually put it down to hormones until receiving information through the post about the Allergan implant. Otherwise I would be blissfully (and stupidly) unaware of this whole situation.
I really don't want anything inside my body, my life situation with my ex was very different when I took this route. So I just want checked and, if possible, everything removed for good. I've been In an advanced stage before with cervical issues - and did attempt to have a hysterectomy for that recurring. However they've put that on review. it may sound over reactionary - but I'd really rather it was all gone. Would just like to have some piece of mind and bring up my boys. xx
I am so sorry to hear what you are going through but I am very glad you have been doing your research. A lot of women have been fighting with doctors to be listened to.
In terms of testing, you should be asking for that biopsy (fluid, lymph nodes and or any lumps) but I would also ask for MRI. Unfortunately the biopsy of the capsule would only be done after explanting as it cannot be done before. Any person with textured implants should be requesting a biopsy of the capsule.
I think it would be helpful for you to join a group on Facebook called “ALCL in women with breast implants BIA-ALCL”. There are loads of women that have been diagnosed but also many others that have had the same issues you describe.
Thank you so much for your reply. I will make sure I ask for those tests this evening and take it from there. Do you know roughly how long it takes for the results to come back?
