Hello,
On May 1st I was diagnosed with BIA-ALCL. I never had any problems untill April 20th 2026. No lumps, bumps, pain or discomfort that would make me think something might be amiss. I had my implants done in 2003. I have always been very proud of them and still have no regrets. To me that was the one thing I was proud of that I managed to do for myself... I haven't had an easy life and was only just, since mid January, starting to rebuild my life after suffering domestic abuse in total of a little over 30 years. After which I had a year of 4 times weekly intense therapy for it. Then this happened. As you might imagine I suffer badly from anxiety now anyway and this isn't helping. Friday May 22nd I had my PET/ CT scan. It is now Sunday, May 24th,and in 3 days on May 27th, I will have a bilateral en bloc capsulectomy. I am absolutely terrified about the mental / psychological side it will have on me.
Please don't judge me or think me shallow...my feelings are all over the place and I don't know what to do with them....
Hi again Dear_Mouse and well done navigating across from the New to Community.
There is no judgement here…. as my oldest granddaughter (13) would say “pants grandad”…. she is a wise girl.
This will have been a significant knock to you and although it’s a journey you don’t want to navigate…. It is what it is.
As you know BIA-ALCL is a type of T-Cell Non Hodgkin’s Lymphoma…..anaplastic large cell lymphoma (ALCL) and is often seen to act like a slow growing Low-grade non-Hodgkin lymphoma.
I have little knowledge of the process you are going through but from the people I have talked with it’s an important part of getting this under control and then being able to treat the ALCL.
There have been a few folks in the group over the years had this so let’s see if they are still looking in….. The fact that Lymphomas in general are very treatable means that people only stay on the community until their treatment is complete and then move on with life.
Once the bilateral en bloc capsulectomy is complete has there been an indication as to further treatment?
I am assuming that you are in the UK…… if this is correct and to help you get some support can I recommend that first thing tomorrow (allowing for the Bank Holiday) you call the Lymphoma Action helpline that is open week days from 10 till 3 on 0808 808 5555.
This is a safe place to talk things through and get support from people who can help you out.
Lymphoma Action is the UKs main Lymphoma charity, their website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have volunteered with them for about as long as I have with Macmillan……
They run various Support Platforms… I highly recommend you check these groups out as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
I know there are a number of women in our Closed FB group who have navigated BIA-ALCL and with over 6400 members there is always someone around to chat with and unfortunately you would most likely bump into me on there also ;)
Lymphoma Action also have a great Buddy Service where you can be linked up with someone who has walked the same-ish treatment journey.
Talking to people ‘face to face’ can be very helpful so do check to see if you have a local Maggie's Centre in your area as these folks are amazing.
I have given you a lot of information….. but the main thing is that this group is here to help you until you get your head round this unwanted journey.
In way of some encouragement…… I was diagnosed in 1999 age 43 with one of the rare (8 in a million) hard to treat, incurable types of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphomas when our daughters were 14 and 18……
I continued to work for 12 years in a demanding teaching job and yes had various treatments treatments over these years then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4.
So due to me having g to be treated for two types of Lymphomas at the same time I had some very intensive treatment between Oct 2013 to Oct 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters…..
I turned 70 back in Nov last year and I am coming up to 10.5 years since my last treatment. I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
((hugs))
