October is Breast Cancer Awareness Month.
As told to Marnie Goodfriend
My only wish was to become a doctor. My father was a surgeon and my mother was a nurse. I did my PhD on the genetics of cancer and trained as a breast surgeon in my 30s. I loved the human body and I loved surgery. It was my life. But I have never examined my own breasts. I thought, “I’m a doctor. I’m not going to get breast cancer.” I was healthy, had no history of breast cancer in my family, and felt invincible. I had recently gotten engaged and had just signed up for my first triathlon when I saw a bump. In the end it was just a cyst and I still haven’t examined my breasts.
Two and a half years later, a month after driving up the Stelvio Pass, an important mountain pass in Italy, I discovered another lump. My mammogram was normal, but when I did my ultrasound, I looked at the screen and saw cancer. The surgeon was my friend and mentor who trained me. She saw what I saw and asked me, “Who do you want to treat because I don’t think I can?”
I had to wait a week for the official results, but as a doctor I knew too much. I said to my parents, “In a week I will tell you that I have breast cancer.” It’s like I’ve distanced myself from myself. The results were positive for stage 3b breast cancer and I started chemotherapy to control the disease. Suddenly, I was about to undergo every treatment I gave my patients and I realized how little I knew, how afraid I was, and how monumental the decisions women with breast cancer have to make in a very short period of time.
The chemotherapy – every three weeks for five months – was terrible. You lose everything – your fertility, your dignity, your strength, your hair, your nails, your pride. I didn’t know how to deal with intimacy with my husband: do you touch the breast or not? How do I function in the world? Chemotherapy caused immediate menopause, leaving me with brain fog, hot flashes and night sweats so severe I thought I had wet myself in bed. You’re dealing with these instantaneous changes to your body and your life while you’re really sick.
(Photo/Liz O’Riordan)
The week before Christmas in December 2015 I had a mastectomy with implant reconstruction where a few lymph nodes were removed. But unfortunately there was still 13 centimeters of cancer in my breast that had spread to my lymph nodes. So the following month I had another operation to remove all my lymph nodes and in April 2016 I had radiotherapy (that’s what we call radiation in the UK) and was prescribed medication to stop the cancer coming back. I was unable to work during this time, and it took about eight months after treatment was completed for my energy levels and immune system to return to normal.
When I returned, I accompanied another doctor to ensure I could practice safely. As a cancer patient, it was extremely difficult to tell patients that they had cancer. It felt like I was reliving my own diagnosis, and knowing how much they would hurt after surgery was mentally challenging. Everyone asked me how I felt after having cancer, but I just wanted to be Liz.
When you have cancer, your identity suddenly changes. People didn’t recognize me because I used to have long hair and now it was short and gray. I went to a local hospital where I had worked as a resident and saw the woman who had trained me. The only way she could deal with me was to stop being friends with me and try to reduce the emotional toll of having the surgery on someone you know. It was really difficult to be operated on and treated by my colleagues and my husband, who is also a surgeon.
(Photo/Liz O’Riordan)
I was home alone and couldn’t have children. I lived in a small village and didn’t have many friends. I had lost my job, my purpose, my identity and my financial security. I started blogging weekly about my experiences and decided to “come out” on Twitter the day after I received my diagnosis. I always tweeted about triathlons and baking. Now I have been inundated with information and support from people all over the world. They told me, a breast cancer surgeon, how to cope with chemotherapy, what toothpaste is best for when your mouth is sore, and recommended cookbooks. Overnight, I immediately had a network of women who supported me. My aim in writing was to express a sensible, non-reactionary opinion – and doctors and nurses thanked me for it. I realized I could help people in other ways.
I began explaining breast cancer through videos, texts and social media posts, using my dual experiences as a surgeon and patient to reach people around the world and help them cope with cancer. In some ways it was more fulfilling than being a doctor. I could connect with patients on an intimate level and encourage healthcare providers to talk about sex, menopause, and how to help people continue to live after surgery, not just be alive. The growing community also shared key resources like CoppaFeel!, a UK-based organization that teaches you how to properly examine yourself and sends you a text message reminder on the first day of every month to examine your breasts.
In the spring of 2018, I noticed a lump on my breast below my left armpit. There was a recurrence on my chest wall and that meant I had to have my implant removed and further surgery and radiotherapy. In September 2018, I had my ovaries removed and was given another hormone blocker tablet to prevent the cancer from coming back. I received a lot of therapy and treatment for my left arm because I couldn’t lift it very high and you have to contort yourself into difficult positions for reconstruction. Psychologically I was a mess. I was so afraid of the cancer coming back that I couldn’t be around women who had recurrences, so I retired at 43.
This led to a collaboration with another local doctor who had been diagnosed with breast cancer around the same time as me. We had bought 20 books together about life as a breast cancer patient and read questions online like: “Is sex safe during chemotherapy?” “Will my husband lose his hair too?” “Should I do a detox?” You want to connect and be hugged, but there are men who sleep in separate bedrooms because they are afraid of getting cancer. We wanted to tell younger women to take preventive measures now and the importance of breast exams if you’re already having a mammogram.
Liz will receive the 2024 Humanitarian Award
To dispel misinformation online and support patients, we decided to write a sensible book about breast cancer that answers all of patients’ questions from diagnosis to death. I am deeply concerned about the rise of false information and people pushing alternative therapies and scams to make money. People believe them, and women in their 30s and 40s are dying because of something they do on TikTok instead of believing healthcare providers. Our book covers sex, exercise and mental health. We now know that exercise can reduce the physical and mental side effects of cancer and the risk of recurrence. It also helps against fatigue. Before I had cancer, I was all about the data, my heart rate and the ideal heart rate zones. Now I go to runs at the local park and ride bikes with people because I’ve made lasting friendships and that brings me joy. I am also into wild swimming and swim in rivers in winter.
In 2022, six months after my mother died of metastatic cancer in her right arm, my breast cancer recurred in the skin near my mastectomy scar. I’ve had more surgeries, and now I’m getting monthly injections and taking low-dose chemotherapy, which I’ll take for the rest of my life, but the fact that I was able to use this terrible experience for good has changed me. Sharing my writing online paved the way for me to become a published author and be asked to give a TEDx talk to help and protect breast cancer patients and the people who love them. I talk about how I never thought I would feel like a woman again – I just looked like an alien. Then I remembered that all I could see of people during the operation were their eyes, which made me realize that I didn’t need external features to define me. A different relationship with ourselves and our bodies begins from within.
Today I speak at events and conferences around the world, have a large following on social media, and in 2024 I received a Humanitarian Award presented to me by Elizabeth Hurley. My new book, The Cancer Roadmap, will be released this November, and I’m working on another book about food and heading into season four of my podcasts. But I also have to realize that I have breast cancer, which means I have to take more time for myself. More swimming in the river, more dog walks, more peaceful moments in the garden.
resources
The Brem Foundation
The Get in Touch Foundation
Susan G. Komen Foundation
Breast Cancer Research Foundation
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Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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