Content note: this interview contains experience of cancer diagnosis, treatment and late effects.
Dee, 64, lives in the South-West with her husband and two dogs. Just before Christmas in 2021, she was diagnosed with Stage 3 breast cancer. This is her story, as told to Radiotherapy UK.
Talk us through your cancer diagnosis
“In November 2021 I went for a routine mammogram and was then sent for scans, biopsies, ultrasound, and a 3D mammogram which was quite funky.
“Just before Christmas I got a phone call to say I had Stage 3 HER2-positive micropapillary breast cancer, which meant it was leaching into the blood vessels around it. I think I swore, then apologised, and the consultant told me not to worry, and that most people just cry.
“My husband and I had already talked it through and said we wouldn’t tell anyone until after Christmas.
“I went back to the consultant on December 28 and had a lumpectomy scheduled for January 4. I think I was still in shock and hadn’t processed the diagnosis. They also took out three lymph nodes. Thankfully it had not spread.”
What was your experience of radiotherapy?
“I had seroma (a mass or lump caused by a buildup of clear fluid) where they took out the lymph nodes and that delayed radiotherapy by two weeks.
“When I went for a planning visit I had to go in alone, which was intimidating because my husband had come to my other appointments. I asked if I could record the conversation but they didn’t want me to. I walked out in a complete haze – a fog of information.
“For my first session they struggled to line me up and it took much longer than they expected. The second session they just could not get me lined up, so we started from scratch and they found my tattoo was 1.5cm in the wrong direction. They redid everything and were so apologetic and nice. They took me for a coffee and a biscuit and seemed gutted there had been a mistake.
“I did get leaflets on the side effects, and a phone call after two weeks. But a lot was glossed over. I heard quite a lot that it would be very rare or unlucky to get a side effect but when I researched into it, it was actually quite common.
“I ended up with quite a large lump where I had the lumpectomy and lymphoedema as a result of the radiotherapy and for five months I hated looking in the mirror at myself. I had one boob that drooped and the other was solid and painful, when I just wanted two pert ones! I’m having treatment for the lymphodema now and I have to wear a compression vest which I call ‘the passion killer’.
What helped you cope with cancer?
“I needed to take charge and take ownership of my body. There was so much I couldn’t control so I looked at the things that I could, such as fitness and diet. I tried to keep doing what I enjoyed: walking the dogs, exercise classes, lighter weights – just doing what I could.
“I had two very supportive friends. Without them I would have gone off the rails. One is my personal trainer and she had cancer nine years ago so when I was down I could let it all out and know that she understood. My sister-in-law was great too. She understood the emotions and what I was going through.
“I did have counselling through a local charity called We Hear You over the phone for six sessions, just talking through the emotions. I felt quite angry. I thought ‘why me?’ and ‘will it happen again?’ My counsellor was eight years post breast cancer and she told me she still had those feelings but they’d become easier to bear. We talked about using yoga and breathing to calm me down.”
What did you find hard?
“People would say quite often that they understood and I’d ask if they’d had cancer and then they’d say ‘No’ and I’d think actually they didn’t understand at all. It was such a rollercoaster of emotions. I would wake in the night and wonder if it would come back or worry that I’d passed it to my daughter.
“It sometimes feels really irrational. You’ll be washing the floor and think ‘what if this is the last time I do this’. You don’t really know what triggers it.
“I think either the late effects weren’t explained in enough detail or I was in too much shock to process what was said. Reading things in a leaflet doesn’t do it for me. Words on a piece of paper are cold. If you sit with someone you can gauge the depth and impact of the information and one question can lead to another.
“It was too late for me, but my local hospital has done some videos about side effects and the processes involved.
“When I had the letter about my radiotherapy treatment some of the language was different, and scarier. I think it would have helped if it had been the same. My breast cancer nurse referred to the cancer as ‘micropapillary’, but the letter said something about ‘invasion into blood vessels’. I was told I’d have six sessions and I ended up having ten.
“Covid made everything extremely strange physically and emotionally. There were people diagnosed earlier than me that had no support at all: but I wish there was more signposting for support. I was told early on not to look at American websites because the treatment is so different but not everyone would know that.
“I would do radiotherapy again though. I had to put my trust in the hands of the people who know best as I knew it might be saving my life.”
How are you now?
“Generally it was all fine and big picture I wake up every day living and breathing. My mammogram this year was clear and I count myself as one of the lucky ones.
“The girls I train with wanted to support me and signed up for the Macmillan Mighty Hike along the Jurassic coast so I thought I better do it too. Five months after my radiotherapy we did 26 miles in 12 hours and in four weeks time we’re doing the Gower peninsula in South Wales.
“I retired early in the September before I was diagnosed but I’ve just started doing two days a week as deputy manager in our local hospice shop. The hospice is doing my lymphoedema treatment and that has been brilliant.”
Any advice for others?
“I’m still very careful with sunscreen and covering up. I was told I’d be fine after six months but I still burn more easily.
“A sense of humour and exercise got me through it. The day after the operation staying in the house was driving me mad, so me and my husband went for a walk and each day after went further and further.
“I am a huge advocate for any screening. My treatment all happened so quickly and the lump was so small I couldn’t feel it, so I feel privileged I could have a mammogram and they had the skills to find it. So if you are offered screening, take it!”