Kadi - recently diagnosed with DCIS. Not sure if I want my lymph nodes removed if it's not necessary

Hi, I’ve recently been diagnosed with DCIS and have chosen to have a single mastectomy. The surgeon is also going to remove a few lymph nodes from my armpit in order to check for invasive cancer.  Since my appointment, I have been reading about lymph node removal and the potential problems this can cause such as lymphoedema, infection etc. 

I’ve been informed that I can refuse to have the lymph nodes removed but may then need a further operation if the cells are not contained within the ducts.

I don’t want to have the lymph nodes removed if it’s not necessary but wonder if, apart from having a second operation, there’s a reason for agreeing to their removal?

Has anyone had any experience of this please?

It’s so difficult as I don’t want to make the wrong choice.

Thank you.

  • Offline in reply to Kadi

    Hi Kadi,

    I had one (out of 3) sentinel lymph nodes removed...my surgeon - rather confusingly - informed me he did not think full Axillary Lymph Node necessary - but that he had been 'over-ruled in a team meeting" - so I [very reluctantly] agreed to to Axillary Lymph Node Clearance. I had 26 removed. Not ONE of them was cancerous. I have had very bad pain and discomfort in my Axilla ever since. That was over four years ago.This is my experience.

    From research I have discovered that Axillary Node Clearance is not carried out anymore in the USA if there are no more than at least TWO lymph nodes with cancel from initial Sentinel Lymph Node biopsy. This, it seems, is due to the fact that the Benefits of 'Axillary Lymph Node Clearance' do not outweigh the risks.

    Get a second opinion before agreeing to anything.

    All the best,

    Kate