My GP sent me home 3 times and made me feel judged for having had implants in the first place. I was later diagnosed with BIA ALCL only after taking a loan to fund the surgery and tests myself. I'm glad awareness is slowly increasing and hopefully less women are being treated this way. It's so important to get word out. This is still an emerging disease.
This is so frightening. I'm glad you didn't give up as the alternative doesn't bear thinking about! That is how I felt, judged...and stupid. I'd even explained that my choices were due to an abusive marriage - so her dismissal of this was absolutely devastating. It doesn't matter what choices people make for what reasons, surely circumstances constantly change and everyone has the right to care and positive regard? I doubt I would currently be able to get a loan but in all honesty have already considered how I would be able to raise the money on my own, should the need arise.
I'm fine now thank you. Been a tough ride though! :-) I'm almost certain you don't need to worry about loans. You're armed with the info you need to at least rule out BIA ALCL (best case) or get the right treatment should you need it. NHS have come a long way with their awareness over the past couple of years.
Panorama and Dispatches both did programmes dedicated to this and there is a lot of advocacy work being done behind the scenes with both the FDA in the US and the MHRA in the UK. These regulators can't ignore the risk anymore and we're seeing a definite shift change.
There was also a dedicated conference a few weeks ago in Rome and the leading experts from all over the world attended. It was recorded (all 12 hours of it!) and can be viewed here: m.youtube.com/watch
I recommend forwarding to the presentations from Suzanne Tuner and Mark Clemens. They're world authorities on BIA ALCL.
It seems I've a lot more reading and research to do. Thanks for all of the valuable information. I think even if things are ok at the moment, I just want everything gone. From what I've looked at it could still develop so it seems the very best option and My health and the care of my boys is all that really matters..:.
Just please don't forget this is very uncommon. The vast majority of women with textured implants won't have any issues. Removing them is very much your choice but in my opinion, being knowledgeable, understanding what signs to look for and understanding your body is the most important part :-) xx
Hoping it's OK to post here... Never ever used a forum before and have posted somewhere else lol
So..
I've had pain intermittently and swelling in my right breast for 6-7 2+weeks (allergan textured implants in 2012-to replace allergan smooth implants in 2000)... Been referred to breast clinic (appt Monday 4th Nov) the pain is getting too much, the swelling is my breast under arm and up to clavicle & my lymph nodes in area are swollen.
In 2000 months after first implants I was diagnosed with under active thyroid, 180 mcg levothyroxine until 2013 they said it was dead.... Did not function.... Roll on 2012/13 I had an overactive thyroid and saw an immune system Dr who said that can't happen !? I have taken no levothyroxine since 2012 and thyroid is stable
My blood work has always (2-3 years shown neutropenia intermittently and raised esonophils!?
I'm seeing breast clinic but I want to see haematology... Something is going on xx
So sorry to hear you're going through this. As I mention a be, I was diagnosed in 2017. With your history of textured Allergan implants, the breast clinic will want to rule out BIA ALCL. That will more than likely be with an ultrasound ro see id there is any fluid around the implant, inside the capsule formed around your implant. If there is, the likely course will be a fine needle aspiration so the fluid can be tested. There are very specific protocols around how this is done e.g at least 50mls is needed (ideally 100mls) in order to successfully test for CD30 cells (the cells that cause BIA ALCL). In fact all fluid should be sent for analysis. Keep your eye on the doctor as I had to stop mine pouring half away. They aren't all familiar with these protocols. I recommend you read through the material available on BIAALCL.com. In particular, the NCCN guidelines that you can print out and take along. These are the closest we have to a global standard and are the product of the world leading experts on BIA ALCL.
I sincerely hope you do not have it. It's very uncommon so please try not to worry too much. In the worst case scenario and you're diagnosed, the prognosis is normally very very good often it's treatable through surgery alone. You're not nt yourself! Let me know if you want to chat. tjeres also a lot of info in the "ALCL in women with breast implants" group on Facebook. They were all a godsend to me. Carla x
Thanks so much for your reply. Been back to gp today and asked for a complete blood count. Is anything likely to show on there do you think? I was up from 5am pacing the floor in agony, nothing eases it at all and I'm feeling fed up. Monday can't come quick enough and hopefully soon I will have some answers.
Thanks so much again and so sorry for what you have been through too x x
Hello everyone, I've posted in here due to chronic constant swelling and pain in right breast, chest and armpit... Today I saw my local NHS breast unit and an NHS surgeon (query BI Alcl or breast cancer) ultra sound normal (no fluid no rupture & no abnormalities seen).I not satisfied though as a lot of info I've read states that not all bialcl cases have seroma? I've also read all implants have fluid collection, even if minor... Mine states none!?
I'm in constant pain
Surgeon stated right breast to collar bone is thicker due to muscle inflammation. Says right breast is harder and is likely capsular contracture causing the inflammation of muscle where the implant and capsule touches muscle?
States def no evidence of breast cancer or BIALCL
My question is can I rest assured there is no BIALCL??? How would I know if there was if no fluid to test and does the inflamed muscle story ring true?
Also notably my inflammatory markers are normal in blood but today I was told I am borderline TSH deficient (under active thyroid) and borderline low white blood cells... Being retested in 8 weeks.... Any thoughts please?
