I had Mastectomy in 2016 I had a 5cmt lump in my left breast I refused chemo and Radiation and just before my June operation in June my brother died of Prostrate and Stomach Cancer also my other brother is a 7 year survivor both had chemo and Radiation

Good morning.....you have had a rough time. I didn't have a mastectomy so no advice on that decision but I felt you just needed a cyber hug and to know we are all here to listen to you.

Take care. Hope the lymphodema continues to improve.

Love Karen

Hello Meggin,

Your story rings bells with me. I refused chemo back in 2010 after mastectomy though I did have radiotherapy and 5 years of tamoxifen at a very low dosage owing to the effects it had on my joints. I've had 10 amazing years and am so grateful for that.

During the Covid dominated year of 2020 I too developed lymphedema and struggled to get help through the NHS, I paid for private treatment which helped enormously. However the pain that I was experiencing was unbearable and eventually after paying for private MRIs and ultrasound I was diagnosed with recurrent metastatic cance , now triple negative and incurable.:-).

The lymphedema got really bad and by the time I was treated in the cancer unit it was 97% larger than the normal arm!!!

My oncologist who is the same person as last time told me the recurrence is nothing to do with the fact that I refused chemo last time around so I am glad I had those amazing years. 

I have purchased a lymphflow machine which some people can get grants towards the cost, the lymph team can apply for you. I use it every day at home (and take it away with me when I can visit family).It has helped keep my swelling under control and made life much more bearable. 

I really hope you find a solution I know how debilitating Lymphedema can be. Happy to chat more if it will help.

Sending big hugs

Julie x