I was diagnosed with DCIS in 2023, in my left breast. I was told I needed a mastectomy because it was a large area. I went flat for practical reasons. I had some issues with seepage from the wound. There was no further treatment. I was warned that there was a 5% chance I would develop lymphoedema, but the nurse told me it was unlikely to happen. I know something was wrong just a few weeks after my surgery. It took months to convince the nurses and physios and eventually I was referred to the Lymph nurse and diagnosed with lymphoedema, two years ago this month.
Lat year, after a huge amount of thought and deliberating, I had a contralateral mastectomy for risk reduction and symmetry. I developed a nasty infection in the third week, if I remember rightly, my surgery was in the summer and there were several heatwaves and I think that didn't help matters. I was told it was only mild, but fluid was pouring out and I had to wear dressings for awhile and I had antibiotics.
I also had issues with my skin becoming very red and peeling after both surgeries and I have no idea what triggered that. I never thought much of all this, but now with hindsight, I think the infection, the red skin and the seepage after my first surgery were all more significant than I was led to believe.
I started noticing similar symptoms with my right arm after my surgery. I was still under the lymph nurse and as I am neurodiverse, she kept putting it down to that but I knew something was wrong, like I did the first time. Long story short, she has now said that it does sound like Lymphoedema and I am now wearing compression sleeves on both arms.
I've been trying to find out how common it is to have lymphoedema in both arms and I have drawn a blank: there seems to be a lack of resources out there too, and I am a member of the LSN before anyone mentions it. I just wondered is anyone out there with a similar story to mine?
