Thank you so much for your reply. So pleased for you that’s it’s not ALCL. I do have fluid around my implant so I really hope they can test the fluid and get back to me as soon as possible, I can’t do anything but focus on the worse!!! I completely agree, I just want them out regaldess of the outcome too! Mine are textured implants! ... I can’t beleive we were not sent letters advising us, our type of implants had been withdrawn from production and had been linked to cancer, I feel maybe we should have been told?
tefardless really happy to hear your in your way to record. Thanks again for your reply
Firstly thank you for your amazing, well informed reply. Secondly congratulations on your remission. I am beyond grateful for your advice. My plastic surgeon wrote a referral letter stating the CD30 protein is to be checked, because when I first was seen by my local breast clinic, the scan showed a lot of fluid around my textured implant and they assumed contracture of the capsule and a rupture. They did not have any knowledge of BIA-ALCL. So I really will self advocate. Thank you again I’m really grateful for the advice.
Glad to hear you’re on top of it! :-) There’s stuff on the website you can print out and take with you. I always find that helpful. Things like ensuring that at least 50ml (and ideally 100mls) of fluid is aspirated for testing. And send all of it if there’s more. I had to stop my radiographer pouring half of mine down the sink! Hopefully you don’t have it but if you do, please feel free to reach out to me and I’ll private message you. Our doctors in the UK are mostly still catching up. I consulted with a specialist in the US and his experience helped guide my UK doctors when they were unsure what to do treatment wise. I’d like to hope that over the past 2 years things have come along in the UK as awareness has increased but I still see a lot of women struggling. Another tip, when you get your pathology results, ask for a copy to confirm the CD30 testing was actually done. We’ve seen a lot of women who were told it was done but it actually wasn’t. I’ve got my fingers crossed for you!! Here if you need me xx
Im sorry they've found fluid. I really do hope they see you soon and all this is sorted. Im so dissappinted we was not told about the allagan textured implants causing alcl. Ive spoke with my docs today and they shall be referring me to plastics to get an appt and get these removed hopefully! Cant wait till they are gone. Good luck and sending you love. XxxX jamie
So sorry. Just saw your message now. How are you doing? Did you get to the bottom of your symptoms yet?
My symptoms were severe swelling of one breast. It was also very itchy but from inside and there was a rash. Looking back, I was also extremely fatigued. Like falling to sleep on a phone call. I didn’t realise at the time that this was probably a symptom too. The same for night sweats.
Swelling is the most common symptom but some women have been diagnosed who have had no symptoms at all. Everyone is different.
I’m quite an unusual case because after my initial diagnosis, I had a bilateral explant and capsulectomy, I went into remission with it came back 12 months later. The second time round, none of my doctors really knew how to treat me. There were lots of opinions ranging from another capsulectomy right through to radiotherapy and chemo. I chose the former and have been in remission for over a year again. So far so good :-)
I really encourage any ladies who are reading this and are worried about BIA ALCL to go and take a look at biaalcl.com/.../ and the Facebook group “ALCL in women with breast implants BIA-ALCL”. It’s a closed group so it’s a safe environment. There are 100+ women who are BIA ALCL diagnosed on there from all over the world and it’s a great place for info or for support if you’re diagnosed.
Wow, I’m so grateful for this advice. I’ll take it all on board! I’m just awaiting the urgent breast clinic referral so I truly hope all is well too. Thanks for your help x
Hi I went to see my surgeon on monday who did my breast implants 8 years ago. They were the textured ones . I paid there and then to have am ultrasound scan to find the one that's not swollen has ruptured and can see particles of silicone and the one that has swollen is not ruptured but is surrounded by fluid and particles. He wrote me a letter to take toy doctor to get an urgent appointment for a biopsy to hopefully rule out BIA ALCL . I am so scared as the symptoms I have seem to match. I just wondered if anyone else had any other symptoms like tiredness and body aching and feeling sick.? These may all just be my worry but it would be nice to know if not.
Have you had any diagnosis so far? I hope you are all well and had a good outcome!
I have fluid around my implant and the doctor is suspicious of ALCL as well. I have Allergan TSF which were the ones recalled apparently. I have had two ultrasounds with aspiration so far. Both were sent to the lab and I am waiting for results. I also have an MRI next week. Has any of your doctors mentioned about removing implant only for testing purposes? I have been reading about doing a biopsy of the capsule but my doctor has not said anything so far.
I am so devastated that nobody told us this before surgery. I knew about other risks but not this one. If I knew I would have never done it.
For those that had implants removed, did you have others put in or have you gone free implants?
Hi, sorry to hear you’re going through this. I was diagnosed in 2017 and I know how frustrating it can be thing to get access to good information.
When it comes to testing, diagnosis and treatment, there are very specific protocols that need to be followed which have been defined by the NCCN (national comprehensive cancer network). These are accepted as what good looks like. It’s essential these are followed but unfortunately most doctors don’t know this so you will have to advocate for yourself and educate your doctors.
Please join the FB group I refer to above in my other comments. You will find the NCCN guidelines on there along with a wealth of other info. You can print things out and take them along to your appointments. It’s a members only group to maintain a safe environment for the women there. You’ll be asked a couple of questions and then your request to join will be approved. Feel free to mention I referred you
One comment, explant should not be done without first waiting for fluid test results. If they’re positive, a PET scan should be done prior to explant nd full en bloc capsulectomy. If fluid test results are negative, explant with a full en bloc capsulectomy is required (probably with further testing of the removed capsule). You can get much more info on the Facebook group. It’s full of diagnosed women and women like yourself who need support.
It’s too soon to worry (I’ll keep my fingers crossed for you) but it’s so important you’re as informed as you can be. You’re not alone! Carla xx
