Thank you so much for all the information. I have joined the group and I definitely feel more confident to ask questions to the doctors. I never heard about BIA-ALCL until Friday last qeek and I have been in shock since then. Seeing I am not alone helps massively. Thanks a lot again

Hi. I'm brand new here. I'd hadn't even heard of BIA ALCL until Saturday but I feel like I've done nothing but read about it and think about it since then!

I had Allergan textured implants put in 13 years ago and have had swelling and pain in 1 breast for 6 weeks. 

I had a lot of fluid aspirated on Saturday and am waiting for results. The hospital didn't tell me how/when I'd get these results and I think I was just a bit in shock to ask  I'm hoping it won't take too long!

Hi Emma,

Did you do your tests in the NHS? They may call you once they are available. If they haven’t called you by mid next week, I would chase it up. 

The first thing is, don’t panic! I didn’t know about BIA ALCL until my breast got swollen and painful. It is shocking but it does not mean you have it. I have been researching since, one can’t help but looking into it. My ultrasound and lab results came back negative and they requested MRI with contrast. I would push for that if I was you. NHS would remove your implants if you wanted to but not replace them unless you had yours placed by them but hopefully you don’t have to get to that point!  

Hi Emma,

Sorry to hear you're going through this.ot remains an uncommon (yet emerging) disease so hopefully your results are negative and you can put this behind you soon. 
 

I was diagnosed myself in 2017. Please ensure that the correct CD30 testing was ordered from the path lab. Unless that specific testing is performed, it's not possible to rule out BIA ALCL. I recommend requesting a copy for yourself and double checking. We've seen many women who were told they were tested but upon further inspection, they were not. Unfortunately it's a symptom of how few doctors and surgeons are up-to-speed with the correct BIA ALCL protocols (which are very specific). 
 

I'm part of a group of women on Facebook who were diagnosed and we support each other to ensure we're as up to date as possible with latest medical research. Advocating for yourself is so important. Ask questions, be informed and push where you need to. I've mentioned the Facebook group and a related website in previous comments which are full of information. 

Here if you would like to talk,

Carla 
 

Thanks for the reply. I had tests at a private hospital but through the nhs. I'm hopeful it's not a long wait!

im having them removed either way and was told by the consultant that he would put me on his list for the surgery. 

I'm sorry to hear you were diagnosed. I hope your treatment went well. 
 

The consultant told me he was testing for cd30 and wrote this on the path lab forms so I'm pleased that he has done this. X

That's great. Good luck and you're not alone xx 

Hi Emma,

I am having an MRI tomorrow as have capsular contracture in my left Allergan implant and lumps in my neck lymph nodes.  Then I'm having an ultrasound with FNA next Monday on the lumps in my neck.

can I ask when you say you had fluid aspirated where was that from? Hope you don't mind me asking!

thanks x

They aspirated my breast.  They used ultrasound to see exactly where the fluid was. I wish I'd asked so many more questions but I suppose they wouldn't have any answers without the test results. 
 

good luck. Make sure you ask when to expect the results. X

Thanks Emma, the hospital I'm attending seem to be more concerned with the lumps in my neck at the moment but I'll keep on at them!

good luck to you too .. it's all so worrying xxx