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 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