Breast Cancer - LWO Community Members Story

Following my breast cancer diagnosis in 2007, I developed very mild lymphoedema in my right arm, non-cancerous side. This was due to an incorrectly inserted PICC line for chemo administration. It didn't cause me much distress and I didn't wear a sleeve. However, in the summer of 2013, which was a warm one, my right arm swelled very quickly one day. I went to clinic and started to wear a sleeve. Unfortunately, two months later I was stung by a wasp on my left hand and my arm started to swell. As I had a spare sleeve, I was able to control it very quickly.

Eight years on, and my arms were stable. I'd worn a right-hand glove which had really helped with the swelling. I didn't have any issues with my left hand until early last year. I had my Covid vaccinations in my left thigh. Soon after the first, I had pain in my shoulder area, and last summer I was diagnosed with frozen shoulder. Since then, my left hand is considerably more swollen. It's difficult to know if the frozen shoulder (FS) has caused this. Reading the FS forums on Facebook makes me think it may have. Generally, my lymphatics haven't been as good since my two AZ vaccinations.

I'm fortunate in that my arms are still relatively slender. My trunk region is also impacted by lymphoedema. I've had a double mastectomy and last year after my FS, I decided to stop wearing my soft bras and have chosen to go bra free. I think that's helped a little. I haven't attended clinic for a lot of years, as they signed me off quickly when my sleeves were prescribed.

I religiously wear sleeves every day. I find a nice warm bath very pleasant early evening, and in the mornings, I have a quick wash then the sleeves go on. I used to moisturise my arms every night, but I haven't found that, for me, to be very beneficial, as the sleeves deteriorated more quickly. I have an oily skin also.

Recently I've paid for fortnightly MLD sessions on my arms. That's helping my left hand and I now wear a glove on that side. I clear my groin nodes regularly to help my trunk. I don't find my trunk that bothersome, although if I look in the mirror it's clearly larger than it should be.

In 2013 I cried for a month knowing I would have to wear sleeves forever but now they are part of my life! I don't really think about them.

In summer 2019 I went for a private consultation to Oxford to see if some new surgeries into lymphatic improvements would help me. It was very useful, but I've decided against it as my arms are still relatively slim. The surgeon agreed that the surgery may not bring me great benefit due to my mild lymphoedema. It's also a costly procedure"

Liz Johnson has been a member of L-W-O Support Group since April 2015 this story is part of our initiative to give our members a voice.

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