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Institute of Genetics and Cancer

Institute of Genetics and Cancer

A blog for our community to write about their interests and to share their stories.

Let’s talk about… being a cancer researcher affected by cancer

Image of Lesley Stark with flowers behind

At the start of Breast Cancer Awareness Month, Professor Lesley Stark talks about the challenges of being diagnosed with cancer while working in cancer research.

Lesley, a professor at the Institute of Genetics and Cancer specialising in colon cancer,  was diagnosed with breast cancer in 2023.

When she was due to attend a routine mammogram appointment in early 2023, she was snowed under at work and almost gave it a miss.

Fortunately she made time for the appointment and months later found out she had breast cancer.

I was feeling I had no time for the appointment, but I teach cancer prevention and thought I should practice what I preach. It was months later a letter arrived saying I had to go for a follow-up. I think the letter got lost as the appointment was just a few days later. I had a cyst before so I thought it was just going to be the same and went to the appointment alone. They told me that day, based on the mammogram and ultra-sound, that I had cancer. They also told me there were two tumours. I felt overwhelmed and was in total disbelief.

They did the biopsy that day and Lesley had to go back a week later to get the results before flying to the USA for the American Association for Cancer Research’s annual meeting.

I think the scariest time was between them taking the biopsy and getting the results. There are different types of breast cancer and some have a poorer prognosis than others. That was my biggest worry although I did know the most likely type for a woman of my age was the most favourable one.

She was diagnosed with ER positive, PR positive and HER2 negative breast cancer which typically responds well to treatment and has a positive prognosis.

I was told by an oncologist that’s the best kind of breast cancer you can have if you’re going to get anything.

She attended the conference in Orlando but was too preoccupied to pay much attention and ended up messaging Dr Caroline Michie, a breast oncologist she knew in Edinburgh.

At her original appointment, which had been in Dundee, she had been told to choose between getting an excision where they take the tumour out, or a mastectomy with reconstruction – which they recommended as she had two tumours.

Caroline said are you absolutely sure you need a mastectomy? I think you should get a second opinion.

Caroline phoned Mike Dixon, a professor of surgery and consultant surgeon in Edinburgh, who immediately phoned Lesley.

I was able to speak to him for a really long time and he said to come in and see him. When I got back, he got me transferred from Dundee to Edinburgh. One of the benefits of working in cancer was knowing people in the field. He was great, and following an ultrasound, confirmed that the cancer could be treated by local excision followed by fat grafting. He said it’s just a blip in your life, you won’t think about it again. He made it seem better. Our contact was quite informal. I was able to WhatsApp him which made it seem less of a big deal.

The operation to remove the cancer was done in one day.

They take the fat out of your legs and put it in your breast and take lymph nodes from under your arm. You feel you’ve been battered about but I took less than two weeks off. Unfortunately, the first op did not have clear margins so I had to go back. Then I got five rounds of radiotherapy. It made me very tired but I didn’t take a day off work. I would walk over to the hospital, get zapped and then come back to work.

As part of her diagnosis, she had been told she had ductal breast cancer, the most prevalent form which grows as a lump, and lobular breast cancer which grows flat and spreads out, making it more difficult to detect – the reason for the two operations.

For Lesley, the worse part of the whole experience was being prescribed the breast cancer drug anastrozole which blocks oestrogen production.

My big bugbear is that I have to take this medicine for ten years. It’s like going through the menopause with steroids. I have hot flushes, weight gain, panic attacks, brain fog and joint pains. Nobody sees that. You’re expected to operate as a scientist at the highest level while feeling tired and unable to think clearly. I sometimes wish people were aware – although I am not one to feel sorry for myself. The joint pain is the worst. I had arthritis anyway but it has accelerated. I’m now on the list for a knee replacement.

While there have been benefits in terms of her treatment, working in cancer research has also had its downsides.

It’s hard at work sometimes. I had to supervise a PhD student and the topic of her thesis was the mechanisms of resistance to the same drug I am on, and how in a certain percentage of women the cancer becomes resistant and comes back more aggressively. I really didn’t want to be listening to this. I have also walked out of a couple of seminars for the same reason. In my work, I have been exposed to a lot of information about breast cancer but not carried out research in this as my area of research is colon cancer. I don’t want to start to research breast cancer as I want to get on with my life.

Her recovery has been helped by the fact she doesn’t drink alcohol, eats healthily and enjoys exercise – including going to the gym four times a week to lose weight and get stronger.

I try not to think about it as there is little I can do and I don’t want it to take over my life.

 

 

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