I'm so glad you got referred. That's brilliant. They should be well informed at the breast clinic but there's a document you could take along with you with the NCCN guidelines which lists out the protocol for diagnosis, staging and treatment.
It's not been formally adopted by the MHRA/NHS (they've been very silent all around) but it's the closest thing we have to a global standard.
You're right and I see you've done your homework! At least 50mls is needed during the ultrasound guided aspiration for accurate testing. 100mls is better but if there's more, it should all be sent for CD30 testing to a pathologist who knows what they're doing
I'm not a doctor but I do believe there are other ways to test including biopsies or doing a PET scan to see if any areas of your body light up. If your fluid is positive then the next step would also be a PET scan. Exactly what order things are done in is particularly important for this kind of cancer so the protocol is crucial.
Other symptoms apart from fluid/swelling women experience range from nothing at all through to pain, itching, rashes, nighsweats, extreme exhaustion and numbness and lots more. It's always hard to know if things like this are an ALCL symptom or for some other reason. You're doing everything right at the moment so try not to worry too much.
And to answer your question, my fourth surgery was a repeat capsulectomy. I didn't have an implant in at that point so they just took a wider margin from the original scar tissue/capsule - much more invasive than the previous surgeries. I did not have chemo or radiation. It was on the table as a possibility at one point but I consulted with the leading experts around the world and in my specific case and with my circumstances, it wasn't the best approach.
I really recommend joining the Facebook group. There are almost 200 diagnosed women on there and the collective knowledge and experience in there is incredible. You have to request to be a member to maintain a safe environment for the women on there (we keep our lawyers and journalist for example) but mention we've been speaking on here when you answer the questions. I'm one of the admins.
Fingers crossed for your appointment. You really are doing everything right. It's a horrible wait and not knowing either way is the worst. Best case you've not got it (it's still very uncommon) and worst case you do but it's very treatable when diagnised and caught early and the Facebook group I mentioned will guide you through every step of the way. I don't think I'd be here today if it weren't for their support and advice.
Thank you so much CMW! I will request to be a member of the FB group now. It's a very lonely place to be right now so connecting with other women who are or have been on a similar journey would be so helpful.
You are so brave for speaking out in the papers and I think we all need to come together and push for change. I first contacted the clinic where I had it done and they were very vague and played clueless until I said that I don't expect anything from them in terms of compensation etc. They then opened up and said that several women are experience the same problems and that they have been fighting the manufacturer, in this case Allegan, for years without any progress. They also said that I need to get the implants out as soon as possible since I have symptoms. It seems like so many manufacturers and clinics are hiding the true number of victims to protect their own interests.
I will print the document in the link and take along to my appointment. I hope that they are aware of the procedure. I'm going to xxxx hospital and I saw that they are doing some research into BIA-ALCL. I wonder how rare it really is since there are 200 women on the FB page alone. The research papers are claiming that only 518 cases have been reported through 25 countries. It sounds like that number can be a lot higher.
Anyway, I hope you will have a wonderful evening. Thank you for answering all my questions. I will let you know how it goes. I might "see" you on FB too!
Hi sorry to hear this. I have just had an ultrasound scan , mri scan of my breast as I had implants Allergan comming up to 10 years and I have noticed a rash on my left breast and very itchy. I then was told alot of fluid around my implant but know gone. I have just noticed swelling 2 times bigger than my right breast in which again looks like fluid , in which is a rupture I am awaiting on my results from my fluid aspiration. I was not aware these implants was recalled. I will update you . I work on the breast unit as a receptionist and my consultant is fully aware of the bialc apparently fingers crossed I get sorted and hope you all do . Such a worry and come to think of it I have been so tired and drained.
That's a flipping lie, nhs will be taking mine out as I'm experiencing pain. My doctor was same so I argued with him saying, look I have a NHS surgeon who's said he's happy to do them on nhs for me if you refere me to him. He was like "I can't do that Maria, laughing" then said what you want me to do? Give you £4K Hahahha I said no you can refer me. Anyways got an urgent appointment at breast clinic, omg nurse consultant was amazing they took me so seriously and were shocked at how my doctor went on, she said we will remove on nhs but won't replace. They found a swollen node in armpit and referred me for ultrasound on wed 11th. They will take them out on grounds they give you discomfort hun. Lay it on with her as if you know a surgeon x
just wondering how you got on with your appointment as I have the exact same symptoms. I am booked in with a breast specialist tomorrow and feeling so anxious
sorry to hear you're having symptoms. I was diagnosed with BIA ALCL in 2017 and again in 2018. There's a great Facebook group with a wealth of information to read up on and take along to your appointment. I recommend you request to join. You can finding it by searching ALCL in women with breast implants. You have to answer a few questions because it's a private group to keep a safe environment for women looking for information.
Do you know if your implants are textured? What symptoms do you have?
Firstly, apologies I have no idea if I'm posting to the right place/forum etc- bit of a novice and I’m hoping I’ve not crashed someone’s post?!
I have previously had tests done for BIA-ALCL in August last year. I went in to get a small lump checked out but the breast doctor was more concerned about the fluid on my breast and the fact it was larger than the other after having had a baby 12 months before. I had lots of tests but was in such as a spin on the day as I hadn't heard of the condition and went straight into panic mode.
I got the results back on the same day and they came back as negative. I do not know the extent of the testing they did as I was in such a panic I literally sprinted out of there to get my baby. The doctor at the time did give me a leaflet about the condition and told me to be aware of it. I am hoping that all the correct testing was done. Nearly 12 months on and I still experience swelling in one breast, it is noticeably cyclical to a point - pain only in the weeks leading up to my monthly cycle and swelling of which the pain disappears the week after for a couple of weeks until we reach that point in my cycle again. However the swelling, whilst up and down, is never fully gone and I know I am retaining fluid as you can feel it by comparison to the other breast. I have also experience night sweats on and off which I read is a symptom but also they are only at a certain time in the month?!
I guess my question is about trying to go back again now that I am more informed to get tested again or if indeed testing should be carried out regularly?? Is this something that should be tested for regularly?
Im a nutshell, I'm scared that something hasn't been picked up. There is clearly something amiss given the fact that one breast is quite large compared to the other. I seem to vaguely remember the doc saying that it was just one of those things that happens after childbirth and if so then that's all well and good but I just feel incredibly nervous about it to a point where I keep having anxiety attacks.
Also, I have no idea what sort of implants I have - I was never given this information at the time (2015)
