You could ask to see your capsule test results so can you verify that CD30 testing was done. This is the only way to rule out BIA ALCL. You're fully entitled to see your own results.
The best thing you can do is to be vigilant for symptoms. No one knows your body better than you do so watch for any changes and seek help if you notice anything out of the ordinary. You've informed yourself well so you're already ahead of many other women out there who haven't been told about the risk of BIA ALCL with textured implants and so don't know whatgot look for. I wasn't even aware it existed until I was diagnosed with it. xxxx
after not being well over I'd say the last 8wks I'm shocked to discover today bia-Alcl
I had pip implants removed 2012 and replaced with textured implants , my breast is very misshaped , rock hard with what I can only explain as a visible lump of fluid on the side , i can't lie on it due to the hardness and it's very uncomfortable
I had bloods taken 3wks ago and had a visit with gp 2wks ago as I've got a lot of other issues going on at the moment my abdomen swollen I look 7mths preg , pain/aching in my legs , headaches and dizziness which I've never at the age of 47 ever suffered with and itching which I've literally left cuts on my body through scratching , Saturday whilst itching I found lump under my jaw which is quite rubbery , my mom as proper stressed all weekend over lymphoma as my dad passed with nhl , well today I've spoken on phone with a gp after reading up about via-alcl he didn't have a clue and as booked me into visit a female gp Thursday , I'm worried sick , did any of you ladies have visible fluid lumps x
Sorry you are going through this. I was diagnosed with BIA-ALCL in January 2020.
My symptoms were severe itching and a rash and my right breast swelled up almost double in size. Bloods showed up nothing. The breast surgeon didn't think it was anything to worry about but suggested she'd do an explant. MRI showed up a lot of fluid between the implant and scar tissue/capsule. Again, she wasn't worried about that but by now I'd done my research and there was a big red flag stopping me having surgery before having a needle aspiration and sent off to immunohistologically in Cambridge.
The test came back positive for CD30 but even then, it didn't mean I had lymphoma. I was however, given surgery (oncological en-bloc) as though I did and this was again sent off to Cambridge and this did confirm I have BIA-ALCL.
What I know now that I didn't know then is, as soon as they had a CD30 positive, the likelihood was, I had lymphoma and I should of recieved a Pet/CT scan prior to surgery to ensure it hadn't metastised. I'm lucky, it hadn't. The lymphoma was only found in the breast fluid and although my haematologist keeps a close eye on me, I've been cancer free since surgery.
So ignore your bloods. They will likely show nothing, they rarely do. Make sure your breast doctor knows what he's testing you for and do your homework and find out where best to send these tests because not all hospitals have the facilities to test for this lymphoma.
As for dizziness, a swollen abdomen (I remember that well) and constant heavy legs. I had this for a few years prior to my lymphoma diagnosis so it certainly wasn't lymphoma symptoms for me. My haematologist thinks I had a silent infection going on in the breast capsule and this is what was making me ill. The question I have is, did that infection eventually go on to become anaplastic large cell lymphoma? I believe it did.
You need an MRI so they can see if there is any fluid. You always have a small amount of fluid in the breast capsule but if there's a lot more in one breast than there is in the other, then that needs to be aspirated and tested.
Keep in touch and let us know how you get on. What part of the UK are you?
thank you for your reply , I'm in the West Midlands , I've gathered as much info today and a friend as printed it of ready for gp Thursday as I said he didn't have a clue he was more concerned about the lump under my jaw .
Last nite I was so stressed and worried with all this today I feel so much more relaxed does that sound silly , I had biopsy's for endometrial cancer 2yrs ago which have only recently found out the performed biopsy was blind so awaiting abdomen scan on the 7th April for that .
there is definatly something going on in my body I've always been very active type of can't sit down person but last few weeks I'm drained completely everything is such an effort .
As I said I think there is a definate capsular contracture my ? Is can you still have this fluid in such a hard breast if I'm making any sense x
My breast surgeon thought I had capsular contraction. It turned out I didn't, I just had a lot of fluid and yes, my breast was very hard. GP's unfortunately don't have much of a clue about which way to turn so, at this stage you need to be your own advocate. By the second time I saw my breast surgeon, I was so well read on everything BIA-ALCL. Please understand that breast surgeons generally aren't well read on this. They are used to dealing with breast cancer and this is not breast cancer. They also don't seem keen on the idea that implants can cause this. My surgeon told me it was impossible! They aren't all like this but many are. If you go along to the breast clinic with a full understanding of what you are talking about and then lay your suspicions on the table, they can't argue with that. Just don't let them try and convince you that they can just take the implants out without doing a biopsy first. I cross my fingers and toes that you don't have this lymphoma but if you do, the outcome, even at stage 4 is usually a good one. There is a clinicians group on FB where you can ask people in the know questions. Also lots of links to decent reading material. I'll be thinking of you.
just a little update went to see gp yesterday I really thought after how good she was last week with ordering bloods and ultrasound on my swollen stomach she would of listened but it was like she was a total diff gp , she refused to point blank look at the info I'd printed out sayin she's never heard of such a thing and would research it later
she did an examination saying she didn't no much about implants but obviously one is definatly swollen and very hard then asked if I was concerned with the fluid lump that stands out on the side of my implant , she as referee me to breast clinic but also said don't expect anything quick as covid as pushed appoints back
I asked if she was examining the swollen gland under my jaw but she was very much oh no you need a seperate app for that I did argue it as was told it was breast and neck to be examined so she quickly felt and said oh maybe a cyst but will refer for ultrasound but again not sure when ,
tried to tell her how I'm really not feeling well at all the itching , the head is getting worse , severe lower backpain and tiredness but no apparently I need a new appointment for new symptoms I tried to explain these symptoms are not new I visited her last week , at this point felt like crying I then said oh my bloods were ok then she said I was they so obviously she asnt even looked so I angrily said oh it's fine lymphoma doesn't show in bloods does it to which she replied unfortunate not always ,
she then said oh I remember something about implants vaguely last year , then asked do you have those I tried to explain no but I had pip implants and the ones I now have had for the past 8yrs are textured implants but again her reply was very much I havnt got time for this as she held the door open for me to leave so now it's a waiting game on appoints to come through x
I woke up last week and both my breasts on either side near my ribs hurt like I'd done a big chest workout at the gym. I went to the Dr a few days later as both sides were swollen, there is no redness or itching and they arnt hot so I don't think it's an infection. They arnt rock hard but they are noticeably bigger.
I called my surgeon and he said my implants (2015) are textured and that there is a risk of this type of cancer which I hadn't heard of. I have health anxiety and now I'm in major panic mode. My Dr has been good and referred me to the breast clinic and I had full blood tests done today.
A few questions- can blood test pick up abnormalities with this type of cancer?
Is it common for this to suddenly appear and in both breasts at the same time?
I guess I'm looking for reassurance. I have also requested to join the fb group.
This post is really useful, I've request to join the fb group but had no response yet. I wonder if you're able to answer any of the questions I post above this one?
I am sorry to hear of your concerns. You have done the right thing by getting this investigated. I am afraid that I cannot answer any of your questions, as although I have 2 bouts of breast cancer, I have never had reconstruction.
This thread has not been active for quite some time, but I hope that someone with experience of BIA-ALCL will come along soon and be able to help you further. In the meantime, you might find it helpful to talk to one of our nurses. They are available Mon-Fri from 9.00am-5.00pm and their number is 0808 800 4040.
I sincerely hope that all turns out well for you. Please keep in touch and let us know. We are always here for you.
