Anyone have any advice or experience of obtaining genomic sequencing for triple negative breast cancer to fine tune post operation treatment? Any advice greatly appreciated.
For me, i was told too old for the BRAC tests if it is that you are referring to?
it was implied if I had the gene I would have had the bc earlier in my life, I am 61.
I was advised my treatment would be lumpectomy, node removal (to be checked for cancer), followed by chemo then radiotherapy.
Not sure if this answers your question, maybe you are of an age, family history, where they will test, I find reading on here every plan is so different as we are all so different even though we have tnbc
I wasn’t happy to think of having chemo but I followed the docs advice and am mid way through my treatment.
Best wishes for your treatment plan, maybe also ask your breast care team and doctor for advice re the tests available.
Hello Northernwoman many thanks for your reply. I'm 57. Why too old at 61? You many wish to inform other relatives and I have read the BRAC may have some baring on the triple negative breast cancer as it is less understood? I guess there is an algorithm for all of this!
I went to my GP in Sept after a pea sized lump changed into a 'Worthers original' shape. I had a mammogram in Feb 2019 & the nurse thought the small lump was a crinkle in my breast implant. Yes I know I am an Essex girl, what can I say!?
I was fast tracked through the cancer pathway for a mammogram, saw the consultant there and then who said it looked "nasty", ultrasound and offered biopsy there or then or come back if unsure. Hell yeah! I'll have it here and now, I thought. Very caring team, lights were dimmed and another nurse asked me about work and family to take my mind off the biopsy. Couldn't fault the service I have received They asked if I was with anyone and my husband was wandering about in the concourse as not able to wait with me. The nurse went & found him & brought him to me and the consultant spoke to us. A week later we went back for results and confirmed as triple negative. We had a holiday booked for Nov that had been postponed twice already, she was happy for us to go ahead and booked me in for surgery on 2 Dec.
I had lumpectomy and 3 nodes removed. Pathology results 10 days later by phone (due to covid) Nodes all clear but not satisfied the healthy tissue has clear enough margins so back for more surgery on 22 Dec to scoop out the remaining micro cells of cancer. Consultant said this happens in 20% of cases. I'm Ok with this. Its a nuisance but in the great scheme of things, what a wonderful service.
Top tip: a small soft pillow or soft cuddly toy to stick under your arm for after the operation, hubby picked me one up in a camping shop. I have an incision under my arm for the nodes removal which has been more tender than the one on my breast. Follow their instructions to the letter. Rest as much as possible. I still have a nap most afternoons. It's all so exhausting and I'm done with being superwoman!
With cancer being such an umbrella term and triple negative label just saying it is not responsive to hormone inhibitors that have been successful in reducing recurrence for 80% of breast cancer people, I have been researching to see what would be the best treatment after an operation.
Well thats my story so far....I'm feeling very positive and think attitude will help me through.
Thank you for your reply and for sharing your journey so far.
I had my operation prior to chemotherapy, and as you suggest I followed the instructions to the letter, did all the exercises and have had no issues, but know others may have problems despite doing all exercises as recommended. I did pop a pillow under my arm for sleeping. Sleeping when needed is a must, throughout this journey.
I’m sure a positive attitude will help, and retaining a sense of humour, which I can see you have.
If you go down the Chemotherapy route, it is doable, I’ve done the EC x 3 every 3 weeks, and I am currently on Paclitaxel weekly for 9 weeks. I’ve also got radiotherapy to do. If you have the gene test I think it goes off scores as to if you will need chemotherapy. I’ve asked twice about the test both times being told it is not something they would offer me, they did say my daughter might get earlier mammograms but she would need to talk to her doctor about that and complete a questionnaire to assess her risk.
All my best wishes for your surgery on the 22nd Dec, it is an amazing NHS that we have.
Hello NorthernWoman Thanks for your reply. It's very encouraging to read your message. Like you I will go ahead with the chemo, want to be as confident as possible it has gone for my body. Take care xx
