"My biggest frustration was my surgeon telling me that I can't have lymphoedema because they didn't do a full lymph node clearance....."
LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018
I was diagnosed with breast cancer early July 2012, hormone sensitive in the left breast. I had a lumpectomy and sentinel node biopsy in late July 2012. Around three/four weeks after this I went to my GP as I had a golf ball size lump in my left armpit. My lovely GP wasn't entirely sure, but the new practice nurse had just joined from the healthy legs and lymphoedema team, so she was called in to have a look. She could see very mild lymphoedema in my left arm and a referral was made to the lymphoedema team.
As I was still due to have radiotherapy, they were unable to offer any support other than advising about manual massage/drainage (I forget the exact terminology). An appointment was set for December for me to go back but because they hadn't booked me a series of appointments, treatment didn't start until January 2013 - which included laser treatment and kinesio tape (I loved the pink tape!).
I had another visit in the following few years and eventually had a sleeve prescribed for me.
In September 2016, I was diagnosed with DCIS in my right breast, so I opted for a double mastectomy without reconstruction. I had some challenges with swelling across my chest area and the lymphoedema team supported me with laser treatment and kinesio tape. My right arm is okay, but we are looking at preventative treatment.
My biggest frustration was my surgeon telling me that I can't have lymphoedema because they didn't do a full lymph node clearance; and then when I had revision surgery last December, I ended up arguing with the anaesthetist who didn't accept that he couldn't put the anaesthesia through either arm, again because I hadn't had full node clearance - it was only when I said that my lymphoedema nurse would disagree with him that he accepted that he would have to do it in my foot, which is very painful.
Carol
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