Hi everybody, I have triple negative primary breast cancer. Despite several mammograms, CT scans, an MRI and a PET scan, nothing at all has been found in my left breast. However I presented with a lump in my left armpit which turned out to be tnbc. I had chemo and immunotherapy, after which there was hardly any tumor left. I was then told I needed further treatment. The oncologist wanted me to have a mastectomy and the surgeon wanted me to have whole breast radiotherapy. There is nothing at all wrong with my breast but I need to prevent a local recurrence in that breast.They both wanted me to have an axillary node clearance.
I decided I would have a mastectomy but I was very unsure about the node clearance. I had read a lot about the possible side effects of this surgery, especially the one in four chance of lymphedema. I already have primary lymphedema in my legs so I didn’t want another limb affected! I did lots of research and found out that in some countries they now don’t take out so many lymph nodes because of the side effect of lymphedema. However I found that in the UK a complete node clearance is still standard, although there is a trial going on at the moment to see whether it is possible to remove less lymph nodes. Unfortunately the results of this trial will not be available until 2030, so this will not be of any benefit to any of us yet. So in the end I talked it through again with one of the lovely Breast Cancer Now Nurses who helped me to come to a decision. I agreed to the surgery. It is taking place on the 11th of April. I’m glad I have come to a decision because my head has been going around in circles for weeks! I’m not looking forward to it of course, but I am determined to do my best to do all the prescribed exercises, and hopefully all will be well. However, I know with tnbc I am more likely to get a local recurrence or a distant metastases. I am hoping at all will be well. I would hate to go through surgery only to find that shortly afterwards I have to go onto secondary treatment!
My plastic surgeon in Leeds Amer Hussain pioneers a type of plastic surgery that drains your lymph system into the vein in your upper arm to prevent oedema. I am only 3 months post-op but have no oedema yet. He did this at the same time as my mastectomy and DIEP flap reconstruction. It was a lot of procedures but got it all over at the same time. Good luck xx
Thanks! Yes, I have read about Lymphaticovenous anastomosis (LVA). You are fortunate to have had a surgeon who does this. I live in N. Wales. My surgeon is a general surgeon - not a breast surgeon or a plastic surgeon. Our health board is in “special measures” and has been for years. I asked my general surgeon about LVA. He didn’t know that it was available at one place in S. Wales, which is actually miles from where we live, as we are on the border of England. I didn’t know it was available in Leeds although I do know of a couple of other places in England where it is available. He said that this surgery was not “mainstream” - but he would refer me somewhere for it if I developed lymphoedema. I am 69 years old and small breasted. I told the surgeon I didn’t want a reconstruction, but I would like an aesthetic flat closure (AFC), and showed him a photo. He didn’t know what an (AFC) was, even though I sent him details of how to do it, and said it looked like “a normal mastectomy scar.” He has worked at our hospital for at least 20 years and I expect he has done hundreds of mastectomies (as well as operations for all sorts of other conditions) so I will just have to trust him. I just don’t feel up to going somewhere else for the surgery. On top of this, my oncologist was a locum who has now left before I managed to ask him everything I wanted to know before I made the decision to have surgery in the first place. He was a general oncologist. I asked for a second opinion from on oncologist who specialises in breast cancer in the NHS, but that wasn’t possible, so I would have had to find one privately. I decided not to do this in the end. I will see the new locum oncologist after my surgery. Sadly - it seems that BC treatment - like a lot of other things nowadays - is a post code lottery. I am glad your surgery was successful. Thank you for your good wishes for mine.
Hello, I had a left mastectomy and axillary node clearance a few weeks ago, I had a tumour in my breast and one in my lymph nodes as well. I’ve not found it too bad so far, I would say practice the exercises before you go for surgery so you know what your baseline is. If you have any questions about recovery etc let me know. Best of luck with your surgery!
Thank you 
Glad you are making a good recovery!