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

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

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 

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 

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 

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

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 

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
 

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

I'm not 100% sure if I have capsular contracture, the consultant didn't mention it but I think I may have it slightly in one breast as the shape has changed and it's quite hard across the top. I've had my implants since 2011, how did you find find out they had been recalled, I just so happened to have googled something and it came up.the company I had them Done with didn't contact me.

 
thank you so much xxx

Lots of great info here from DKOE. 
 

If you're still looking for info, I second the recommendation from DKOE and encourage anyone on here looking for more info to search for the NCCN Guidelines on BIA ALCL. If you can't find it, there is a link to it on www.BIAALCL.com. There is also a lot of other helpful info on the website. It's full of great material. If you'd like more info, there's also a great Facebook group called "ALCL in Women with Breast Implant BIA ALCL". There are over 200 women diagnosed with BIA ALCL and it's a great resource to learn more about it.

Hi CMW

I wonder if you could please offer me some advice as you are very knowledgable on BIA ALCL.  I had an urgent referral this week after my right breast swelled significantly.  My lymph nodes were checked and clear, mammogram was fine and no implant rupture seen (this is what the emergency doctor initially thought was the cause).  At the ultrasound a lot of fluid was found.  The sonographer doing the ultrasound dashed out of the room and got her colleague in who confirmed whatever she was looking at (im so glad id already researched on here what could be wrong as otherwise id have been more terrified at their urgency of it all!) she then immediately started to aspirate the fluid off and got 60mls to send off for testing.  The consultant has given me a weeks course of antibiotics incase it is infection but i dont think it is.  I am beside myself with worry.  I cant seem to find any statistics re. suspected ALCL that turn out to be benign (is there ever such a thing?)  I have had no other symptoms apart from occasional night sweats which i put down to menopause symptoms.  Any advice you can offer would be much appreciated x

Hi CMW

I wonder if you could please offer me some advice as you are very knowledgable on BIA ALCL.  I had an urgent referral this week after my right breast swelled significantly.  My lymph nodes were checked and clear, mammogram was fine and no implant rupture seen (this is what the emergency doctor initially thought was the cause).  At the ultrasound a lot of fluid was found.  The sonographer doing the ultrasound dashed out of the room and got her colleague in who confirmed whatever she was looking at (im so glad id already researched on here what could be wrong as otherwise id have been more terrified at their urgency of it all!) she then immediately started to aspirate the fluid off and got 60mls to send off for testing.  The consultant has given me a weeks course of antibiotics incase it is infection but i dont think it is.  I am beside myself with worry.  I cant seem to find any statistics re. suspected ALCL that turn out to be benign (is there ever such a thing?)  I have had no other symptoms apart from occasional night sweats which i put down to menopause symptoms.  Any advice you can offer would be much appreciated x

Hi Cyprussun,

Sorry to hear you're going through this and I'm so glad you're informed on BIA ALCL. You're already a step ahead. I was diagnosed in 2017 and had not even heard of it until the doctor told me.

It's important you confirm what the aspirated fluid is being tested for. Testing for BIA ALCL is very specific and it won't be picked up otherwise. The fluid should be tested for CD30. All the information needed on that is here: biaalcl.com/.../NCCN-Guidelines-January-2020.pdf.  It's a great document to have printed out at your appointments because unfortunately many doctors are not yet familiar with the correct protocols around diagnisis and treatment of BIA ALCL. www.biaalcl.com has lots of other great resources too.

A little bit of fluid in the capsule is normal. Larger amounts of fluid can mean many different things. It is a symptom of BIA ALCL but it could also due to something else so please do not worry too much yet. BIA ALCL is uncommon so the odds are definitely on your side that it is is NOT that.

Do you know if you implants you have in have a textured surface or a smooth surface? So far there have only been BIA ALCL cases associated with textured implants. If you're are smooth, you have even less reason to worry.

You're right to be asking all these questions. The right testing is absolutely essential for your to rule our BIA ALCL so you can move on. Please be as assertive as you need to be with the doctors involved to ensure the CD30 testing is being done. Ask to see the report afterwards so you can verify it yourself (I've seen examples where women were told CD30 testing was done but it was not). 

And if you're unlucky enough to get diagnosed, in most cases it is fully treatable by removing the implants and the capsule that surrounds them. Please reach out if you need support. I also recommend joining the Facebook group "ALCL In Women With Breast Implants BIA-ALCL". There's a wealth of information available from ladies looking for more info and also over 200 diagnosed ladies who have first hand knowledge and experience to share.  

Hang in there. Let's hope you can rule this out and put it all behind you very soon xx

Hi CMW

Thank you so much for the quick response.  I told the consultant i was worried it was ALCL and he said it was being sent off for testing of this and also to test for infection.  I will ensure though that i ask to see the report and check for myself that the relevant testing has been done.  I have slight swelling and pain in my breast today from where the aspiration was (is this normal as the sonographer did not say anything to me afterwards re. aftercare).   Now that the fluid has been removed my breast is pretty much normal size apart from swelling where the needle was.  How soon would it fill again if it was ALCL ?

My implants were textured low profile in 2003 and i have had no trouble whatsoever with them in all this time.  I did not even know about BIA ALCL until i googled my symptoms after getting the rapid onset swelling, hence never feeling the need to get them replaced prior to this.   The emergency surgeon i saw over the weekend thought it may have been a rupture but according to the mammogram they are both fine and intact. 

I cant help but think it is ALCL as i cant find any cases where there was a lot of fluid and it turned out to be something else.    I have googled constantly which on one hand is good as it makes me more informed but on the other its not! Have you heard of any cases similar to mine?  Im sorry that your diagnosis was this, you sound like you have remained very strong and positive though throughout it all.

I have applied to join the facebook group and my request is currently pending.

Thank you again for your help and advice, X

Hi Cyrussun,

No problem! I still think it's worth confriming with the consukltant that the testing includes CD3o testing. He/she may not be familiar with this very specialised testing if he/she hasn't had direct experience with BIA ALCL. 

Aspirations are not pleasant! It will probably be sore for a couple if days. There's no hard and fast rule that if it's BIA ALCL, the breast will fill up again. Symptoms are different in every person. Some women don't get any fluid or swelling, some do. Sometimes there are no symptoms whatsoever. Sometimes it's a rash or itching.

Also, I have seen many examples of women who had fluid/swelling and who did NOT have BIA ALCL. Fluid/swelling is the most common symptom of BIA ALCL but remeber that overall, your chances of getting BIA ALCL are low. It's far more likely to be something else. I don't want to take away from the importance of everything you're doing to rule it out. It really does matter! It's your health and peace of mind at stake and catching it early increases your chances of remission if you are unlucky enough to be diagnosed. Well done for being on top of this and seeking the info you need! :-) You've got this!

I'm also a part-time admin of the FB group so I'll go and take a look and approve your request now. 

xx

Hi CMW

I Will definitely be checking for this at my appointment, your advice on what to ask is invaluable!

and you're right, aspirations are not nice at all..I think I had that much adrenaline running through me yesterday that I didn't really notice pain at the time. Today though I feel so bruised :( 

That's reassured me a little too to know that there are instances of swelling/fluid that turned out to be something else, it helps so much to hear of other experiences when it's something I had never heard of a week ago. 
thank u also for the fbook approval...I'll take a look now! x

Hi all,

I was wondering if you could give me some advice. I had textured implants back in 2017. Yesterday I found a lump on my breast, and following some google, found out about the risks of BIA ALCL and I'm horrified!

I want to get this lump tested, but even if it's all clear I also want to get these damned textured implants out and replaced with smooth implants as I hate the idea of having unknowingly increased my risk of cancer. Going implant free isn't really an option for me as I have so little breast tissue (not even aa cup) that it's a huge insecurity of mine (hence the implants in the first place). Does anyone know if this will reduce future risk? Do I need to get the capsule removed too? 
 

I'm only 23 and this whole thing is really scary, very frightened about this lump and I'm scared the doctors will just dismiss me because I'm so young 

Also, when you ask for CD30 testing will they also test for normal signs of breast cancer? I don't know if this lump is beningn, or if it's BIA ALCL or just regular breast cancer. Feeling very overwhelmed about next steps 

Hi Maisym00,

Sorry to hear you're going through this but please try not to worry. I would suggest booking in to discuss these conerns with your GP. They should refer you to a breat clinic for further testing, if required. It's great you're informing yourself on the risks of BIA ALCL with textured implants. It may be helpful to print out some of the key material on BIA ALCL in case your GP is unfamilar with it (it still happens a lot unfortunately). The NCCN Guidelines is a good doc (available at www.biaalcl.com). If you're referred to a breast clinic, you can also discuss BIA ALCL with them to see if any testing if required. 

Take one thing at a time. First address the lump. Once that's resolved think about what you'd like to do next. There are risks involved in removing/exchanging implants too so there's a lot to weigh up. Many women with textured implants choose or are advised to keep them in but be alert to any changes so that they can be investigated. 

Bit by bit! You can go it. Let us know how yu get on. Sending lots of positive energy xx

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

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 

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!