Trainee Therapeutic Radiographer and Radiotherapy UK Ambassador Emily Reed shares her experience of genetic counselling and how her mother’s breast cancer diagnosis has influenced a deep desire to help others.
Emily Reed’s life has been intertwined with cancer for as long as she can remember. The day after her first birthday, her mother, Louise, had a right breast mastectomy. Before Emily turned 10, her mother was diagnosed with primary cancer again, this time in her left breast.
Emily said: “I remember Dad taking me to visit her in hospital. A nurse came down to change mum’s bandages and they wanted him to take me out the room so I would not have to see the scars. Dad replied, ‘No, she needs to see her Mum. She needs to see that although it is scary, it is all to help her recover.’”
A vocation in cancer care
Now 22, Emily has just completed her final degree year at SHU to become a Therapeutic Radiographer, an Allied Health Profession that delivers high-quality cancer care through the treatment of radiotherapy. Her chosen career has been influenced by her mum’s diagnosis, and her grandmother’s radiotherapy treatment for cancer.
With up to 10% of breast cancers having a genetic link, Emily and her mum spoke to a nurse about options for Emily, shortly after her mother celebrated 10 years of being cancer free.
Later that same year, Emily’s mum learned she carries a change in the BRCA2 gene, which can cause a higher risk of several different cancer types: breast, ovarian, and pancreatic in women; breast, prostate, and pancreatic in men.
Genetic Counselling
Because of this increased risk, Emily and other family members were offered genetic counselling – talking with a genetics specialist to understand their options knowing that they might be affected by a hereditary genetic condition.
Emily’s appointment was in February this year, and she went with her mum and dad.
She said: “Having them there to listen was really helpful because there is a lot of information to take in.
“The genetic counsellor wanted to know what I understood, mum’s history and my own lifestyle choices like whether I smoke or drink. She explained what the BRCA gene is and what my future options could be, including mastectomy, chemotherapy, and hormone therapy such as Tamoxifen.
“The counsellor also asked if I checked my breasts and stressed its importance. My main question was how this might affect any future children I might have and I learned there is a 50% chance they would not have the mutation – even if I did.
Choosing to know
After the counselling process, Emily chose to have a DNA blood test for the BRCA2 gene, with a six to eight week wait for results.
Emily said: “I had a follow up letter and unfortunately there was a leaflet about Tamoxifen which I saw first. My heart sank because I thought that meant I had tested positive, but the letter was just covering the information and statistics for a preventative mode of treatment.
“I think we need to think carefully about what information we give to people and when we give it. That choice to include the leaflet, although well-intentioned, caused me some unnecessary stress, at an already stressful time.
Living with the results
Emily said: “In March I found out that I have unfortunately inherited the BRCA2 mutation. My lifetime risk of developing breast cancer is now between 45% and 85%, and I have a 10% to 30% lifetime risk of developing ovarian cancer. However, this does not necessarily mean that I will get cancer.
“There was a part of me that really didn’t think I would inherit the alteration, but I know I will be closely monitored and I will be accessing support such as the @brca_chat Instagram page, which is a charity supporting those in the UK affected by the BRCA+ mutation.”
Emily has had her follow-up appointment and revisited her preventative options, and what this means for her plans to have children.
She said: “I was told I can consider mastectomy from the age of 25, going on Tamoxifen from the age of 35, and if I want to have children naturally, I should aim to do this before I turn 40, and then consider having my ovaries removed. There is also a risk-reducing surgery which removes the ovaries and fallopian tubes that I can consider.
“I also put forward my interest for the EMBRACE Study (Epidemiological Study of Familial Breast Cancer) which aims to look at finding out more about the causes of breast, ovarian, prostate, and other cancers in men and women with a family history.”
More challenges ahead
Emily had a letter after her appointment which took her aback.
She said: “There was a paragraph that did surprise me, as I had already been told that I would have a yearly breast MRI/mammography from the age of 30.
“But the letter said I would be offered yearly screenings from the age of 25. Using an algorithm called CANRISK, it was found that my chance of getting breast cancer in the next ten years is 10.2%.”
Emily says the news was a jolt, and the lack of detail about how the algorithm worked left her feeling unsettled again.
She explained: “I had come to terms with my risk level, and the letter showed me things were worse than I thought. That was really hard.
“Genetic Counselling has had its ups and downs. I was at university for my final academic week when I got the text from mum saying ‘I think your letter is here,’ so we opened it on a video call.
“The only thing I regret was not waiting until I was home to find out. I saw the guilt on mum’s face and I wanted to hug her and tell her it was never her fault.
The future
Right now, Emily is concentrating on finishing her work placements, and taking great pride in caring for her patients.
She said: “I don’t know what it’s like to have cancer, but one day I might. And since I was tiny, cancer has been a huge part of my life. Despite that, or because of that, me and my family are really happy. Our time together is precious.
“It has really informed the type of professional I want to be throughout my career. Someone that is an active listener, can provide person-centred care and make care and wellbeing my top priority.”
