Absolutely not a doctor so my understanding is limited but an MRI looks at what's happening inside your body at a tissue and organs level. The PET scan looks at a cellular level to detect any strange cellular activity that might be indicative of cancer. BIA ALCL can be just at a cellular level without the presence of tumours for example.
Women who have been diagnosed have had intermittent swelling so even it it goes down and swells up again, it's still potentially a symptom. Did the breast specialist say if there was any fluid in your breast when she did the ultrasound? Not all diagnosed women have that symptom but it's a common one. Of course if there was no fluid, there was noting to aspirate and test.
It might be easier for us to chat on the phone. I'll add you as a friend on here and if you want to, you can share your number with me. xx
I know you asked that question to breast86 but I just wanted to say that infammation or swelling of the breast could be for lots of different reasons. It's a common BIA ALCL symptom but it could be due to a whole host of other reasons, including much less serious ones! :-)
Firstly, apologies I went quiet, I decided that until I had my appointment that going on the lowdown and ignoring the issue was the best way to deal with it rather than scaring the life out of myself.
I had my appointment yesterday with the breast clinic and they immediately sent me for a scan of my breast, the areas of swelling and the implant as well as under my arm. After a very long 3 hours wait they were content that the images showed no fluid of any concern if any at all and the swelling is actually developing tissue. So at the right old age of 37 and a lifetime of no natural breasts it seems lefty has decided to appear. The specialist has said this is likely down the hormones after childbirth and my age kicking in. I also asked how I could go about seeing a NHS plastic surgeon to discuss my options as I'm at the point where my bras don't fit on one side any more. I've been put on a 4 month waiting list but it's a result all round. I've never cried so much in my life over the last two weeks waiting for the appointment and did revisit your comments a lot so thank you all. I have been told to be vigilant though and keep an eye on everything regardless.
This is really fantastic news. After all the worry of the past couple of weeks, you must be so relieved. It is always heartening to get good news here. I am delighted for you.
My head is spinning, hopefully you could help me- I have textured implants ( 10 years old), one of the breast became swollen and limfanodes in the armits were swollen as well. I was put on antibiotics, the swelling went down, along with the limfanodes. I also had an appointment with breast clinic and they found nothing but my concern is I was on antibiotics at that time which my have cleared any fluid. I am still experiencing pain around my breast, under breast, limfanodes are not inflamed but the area under armits is still painful to touch plus it's very difficult to breath!!!! A bit of fast walking and I am suffocating:( I am 39. I want to explant them ASAP as I believe all problems are from implants.
What is the best and quickest way to arrange a surgery? Private surgeons are not operating at the moment, NHS will not do this as they haven't found any problems or maybe they will put me in the long waiting list. What shall I do??? Any advise would be appreciated
At the moment, it sounds as if all you can do is to keep an eye on your breasts and lymph nodes, now that you have stopped taking antibiotics. the pain that you are still experiencing may be due to the handling you've had of your breasts and armpits. I'm sure that you will be examining yourself frequently too, so your tissue is not getting a chance to settle down.
Try not to over examine these area. Maybe just examine yourself gently once a week when you are well soaped up? This shouldn't leave the area so tender afterwards. If the swelling increases, go back to see your GP. Did you mention the problem that you're having with your breathing when you were at the clinic? It might be worth mentioning this to your GP again.
It is impossible to advise you of the best way forward, as appointment times will vary throughout the country. You might find it helpful to ask your GP about the difference in waitng times between private and NHS surgery. Phone up your nearest private hospital and ask when they might be able to carry out this surgery. I do hope that you can get this sorted soon.
this site here has really helped to get some more information.
I was so shocked to (confidentially) find out about Allergan textured implants being taken off the market a few days ago and definitely want to get mine removed!
A few of you have had biopsies and I wanted to get your take on checking for BIA ALCL - I have no symptoms apart from a small soft lump that has been unchanged for 6 weeks now. I went to see my GP at the time and he said it is just a benign cyst, I went again to a gynaecologist who took an ultrasound scan and said he thinks it's lipoma so nothing serious but might be worth getting a biopsy. This was all before I knew about BIA ALCL and so I never mentioned this to them.. I want to go back to my GP and get a biopsy from my lymph/lump in the armpit. Do they just need to check for Norma cancer cells or anything specific like the fluid tests?
i have had a small soft lump in my armpit for around 6 weeks (no pain or swelling around breast) and at the time I didn't know that the textured implants (which I have) can cause BIA ALCL. My GP at the time said it was a benign cyst and I went to a gynaecologist a few weeks ago just to get a second opinion. He took an ultrasound scan, saw nothing around the implant and thinks the lump is just lipoma, a benign fatty restoral in the armpit but advised I could get a biopsy done to be 100% sure.
i now want to go back to my GP to get a biopsy from my lump in my armpit. I am conscious that there is a certain chemical that needs to be checked for fluid, is this also the case for a lymph biopsy or would this just be a normal biopsy to check for cancer cells?
Sorry to hear you're having these issues but glad to see you're keeping yourself well-informed.
I'm not a doctor but I recommend you read up on the NCCN Guidelines on the correct protocol to follow for BIA ALCL diagnosis and take a print out along to your appointment. It goes through what to do if there's a mass and exactly how it should be tested in order to rule out BIA ALCL. There's a flow chart so it's really easy to follow, even for me! This document is available on the NCCN website but it might be easier to find either on the Facebook group "ALCL in women with breast implants BIA-ALCL" or on the website www.biaalcl.com where that document plus a lot of other useful reading have been put all in one place.
Fingers crossed it's nothing to worry about but as you know you have textured implants, ruling it out is absolutely the right thing to be doing. Many doctors are not as knowledgeable about this as we'd hope so be prepared to have to explain the risk to them! These print outs will help. I certainly found them and the Facebook group unbelievably useful. I was diagnosed in 2017 and am in remission now.
