62210members
327489posts
cancel
Showing results for 
Search instead for 
Did you mean: 

BIA ALCL

8 REPLIES 8
Member

Re: BIA ALCL

Omg.....all of this makes me sick to my stomach.  I was diagnosed stage 3 breast cancer in dec.2015.  Had chemo, rads and all lymph nodes removed along with bilateral mastectomy.  I had reconstruction done in June.2017 with Allergan Textured implants   I have been researching non-stop since all this BIA-ALCL came out and my head is spinning.  I'm terrified!! I see my surgeon on Jan.17th to see what she says but I want these things out!!  When I spoke to a Allergan representative they told me there was no need to panic and have them removed!!!!

I'm sorry for any of you who have already been diagnosed with this!! My heart breaks for you!!!

Anyone else have textured implants and struggling with what the next steps are?

Member

Re: BIA ALCL

Omg.....all of this makes me sick to my stomach.  I was diagnosed stage 3 breast cancer in dec.2015.  Had chemo, rads and all lymph nodes removed along with bilateral mastectomy.  I had reconstruction done in June.2017 with Allergan Textured implants 😭  I have been researching non-stop since all this BIA-ALCL came out and my head is spinning.  I'm terrified!! I see my surgeon on Jan.17th to see what she says but I want these things out!!  When I spoke to a Allergan representative they told me there was no need to panic and have them removed!!!!🤬

I'm sorry for any of you who have already been diagnosed with this!! My heart breaks for you!!!

Anyone else have textured implants and struggling with what the next steps are?

Member

Re: BIA ALCL

Hi Chick, yes, I’ve already been in touch with them and they have emailed me to ask if it would be possible to have a chat with them today. Bring it on! X
Community Champion

Re: BIA ALCL

Hello Rach, 

 

Glad you now have had a response from someone who knows more about it.  I see BCC were recently asking if anyone affected with BIA-ALCL wanted to help with a media opportunity - see further down the thread, posted on 16th Oct. 

 

Wishing you all the best and many 🤗 🤗, 

 

Chick 🐣 X

 

 

Member

Re: BIA ALCL

Thanks Chick. I’m getting there, had my reconstruction all removed. Would never risk keeping implants to get another cancer. Thank you so much for your kind words.
Member

Re: BIA ALCL

Hi Pammie, sorry to hear you also suffered this. How have you been since? I would love to know as I’m living in fear. Have had all my reconstruction removed.
Member

Re: BIA ALCL

Hi Rach
I am so very sorry to hear of your diagnosis of ALCL, I was diagnosed of same October 2014, if you would like to talk to someone feel free to message me anytime, kindest regards. Pam x
Community Champion

Re: BIA ALCL

Hello Rach,

 

What a shock and how absolutely awful for you after being through your treatment, surgery and reconstruction. I do not know much about it and hope someone else will come along soon but I just wanted to acknowledge your post.

 

  I do recall reading about Breast implant asscociated ALCL when I was considering reconstruction. I think I was first alerted to it by an article in the Daily Mail Online of all places!  Regarding the rarity of occurence - my understanding that it was very rare as compared to the "regular" (for want of a better term) ALCL.I read that it occurence was in textured type implants rather than smooth.   Even hearing about this apparent rare disorder is enough to put you off.  We have enough to think about and put up with afterwards - it just never seems to end does it?

 

I am assuming that you will be getting treated soon and this will involve removal of the implant.  I do hope any other treatement is relatively straightforward.  The outlook seems to be excellent if caught and treated early.  I think surgeons are now advised to inform women about this prior to surgery as I just saw an update on GOV.UK site from July 2018.

 

I can only try and imagine how this must all feel for you.  I really wish you well Rach,

 

Chick X

 

 

 

 

 

Highlighted
Member

BIA ALCL

Yes, unfortunately after my mastectomy and breast reconstruction, I have now developed ALCL. Absolutely diabolical that none of these issues were discussed at agreements to have reconstruction. 100% went with the advice of professionals. Wish I had never put myself through all those operations to end up at stage 1 again and inherit another cancer. Our NHS are clearly failing us. I’m ashamed to say, but I’m thinking money is becoming moe important than health. Where are the guidelines from FDA and implant companies? Any fool can tell that this has been seriously covered up. My Plastic Surgeon called me to give me this diagnosis and even had written it down for me to Google and do my own research, claiming that I’m the only person in his career who has contracted this. Beggars belief, when I entered my lingerie store two weeks later to be told by the assistant that a woman was in last week with the exact same as me. It is totally not rare like is being made out and I’m afraid to say that my thoughts are because of being afraid of being sued!