Because They Said YES

Mickhala was called for breast screening at 52. She made sure that she went promptly for the screening after watching a colleague go through breast cancer treatment. She was diagnosed with breast cancer in the spring.

A mother of two, Mickhala was trying to process the diagnosis while thinking about her children—one at university and the other still in primary school.

She learned in April 2022 that she had invasive lobular carcinoma Grade 2, 170mm invasive lobular carcinoma with 9mm of invasive ductal carcinoma of no special type in her right breast. She had additional tests on her left breast which fortunately were negative — but this delayed treatment.

She went on to have a right mastectomy, sentinel lymph node biopsy, and immediate breast construction. She had wonderful care from a Consultant Breast and Oncoplastic Surgeon and her hospital Breast Care team.

“I had a few days feeling sorry for myself,” she says. “Then I took some time to clear my head and decided I had to get on with it with the encouragement of my husband.”

Mickhala was preparing herself for the possibility of chemotherapy when she met with her oncology team in August 2022. They told her about the OPTIMA trial and asked whether she would consider taking part.

The trial used a genomic test to help guide treatment decisions. For Mickhala, participating offered a way to make a difficult decision: rather than trying to decide about chemotherapy on her own or with her family, she chose to follow the test result.

“I thought it would be easier to let science decide for me,” she says. “I was prepared for the worst, died my hair pink, and thought I would come back from holiday and start chemotherapy.”

When Mickhala returned from holiday, she learned that the test indicated chemotherapy was unlikely to provide meaningful benefit in her case, and went on to have a course of radiotherapy.

“I felt a major sense of relief,” she says.

She had been concerned that chemotherapy could affect her ability to work, her income and her colleagues – and most importantly, the impact it would have on her family. She had also experienced first-hand from family members how physically and emotionally draining chemotherapy could be.

Mickhala hopes her experience will encourage other patients to learn about their options and consider taking part in research.

“Follow the science,” she says. “Do whatever is in your capabilities to be here.”

At 47, Bora was balancing an office-based role as a local elected politician when she received a breast cancer diagnosis that came as a complete shock.

She had experienced lumpy breasts for 10 to 15 years, with changes that often became more noticeable during her menstrual cycle. When one lump did not go away, she arranged to have it checked. An ultrasound and biopsy confirmed breast cancer.

“I cried,” she says. “It was a total shock.”

Bora approached the diagnosis in a practical way, drawing on her previous experience as a journalist to research the disease and understand the available information. But the process was still difficult.

Referrals, appointments and decisions about surgery meant that roughly two weeks could pass between each step. She was referred to two surgeons while considering how to move forward with treatment as quickly as possible.

She chose to be open about her diagnosis and found that talking with friends and loved ones was an important source of support. Living alone, she particularly valued having people around her who could help her process what was happening.

After her second surgery, her care team needed to determine whether she required additional chemotherapy. The team told her about the OPTIMA trial, which was investigating whether genomic testing could help guide treatment decisions.

Bora had a positive view of clinical research and had already taken part in other studies. She discussed the trial information with friends who were oncologists and decided to participate.

Her main concern was whether she might get her hopes up, as she expected that chemotherapy would probably be recommended.

“To be honest, I kind of forgot I was involved in it,” she says. Participation involved completing a questionnaire about every three months, focused on lifestyle and how she was feeling.

For Bora, the experience reinforced the value of clear, personalized information.

“Data and information can be empowering when they are explained properly,” she says. “There are different types of breast cancer, treatment options and decisions. When testing is available alongside appropriate medical advice, it can help patients feel more empowered.”

Kathryn lives in the UK with her husband, Rick. The couple have been married for 28 years and have two grown-up daughters.

At 50, Kathryn was diagnosed with breast cancer after attending her first routine NHS mammogram. She underwent a mastectomy and had some lymph nodes removed before being referred to a specialist cancer center to discuss her next steps.

During her meeting with her doctors, Kathryn learned about the OPTIMA trial and the possibility that she might not need chemotherapy.

“I was really surprised, as I’d just assumed I’d have to have chemo,” she says. “When I found out that I didn’t, I was over the moon.”

Instead of chemotherapy, Kathryn received other recommended treatments, including a targeted cancer drug, which she took for two years. Avoiding chemotherapy meant she was able to continue working as a teacher and maintain a routine close to her life before her diagnosis.

“I was able to keep doing the job I loved—teaching—and just got on with a life that was pretty close to how it was pre-diagnosis,” she says.

Following this experience, Kathryn says she has discovered a renewed enthusiasm for life. One of her daughters, a personal trainer and strength coach, encouraged her to start going to the gym. She also enjoys spending time in London visiting her other daughter.

“It’s given me a new zest for life,” Kathryn says. “Life is good.”

Kathryn says she had complete confidence in her clinical team and the trial and never had reservations about taking part.

“I know that without patients taking part in research, there won’t be any advances in treatment,” she says. “I was really happy to take part and would encourage other patients to say ‘yes’ too.”

When Aileen was diagnosed with stage three breast cancer, one of her biggest concerns was how treatment would affect her livelihood and her family.

Aileen, now 65, lives in the UK with her husband, Kevin. Together, they run a dry-cleaning business where they work six days a week. They are also parents to three daughters.

Aileen took part in the OPTIMA clinical trial so that she and her doctor could better understand her breast cancer.

Since Aileen’s cancer had spread to a lymph node under her arm, she was eligible for the trial and was randomly assigned to the group receiving a genomic test. Her results showed a low score, indicating that chemotherapy was unlikely to benefit her.

Aileen was able to avoid chemotherapy, and instead had a mastectomy followed by hormone therapy.

This was an enormous relief for her, as she explained: “If I had to have chemotherapy, I probably would have had to stop working and we might have lost our livelihood, which would have been disastrous.”

Avoiding chemotherapy meant Aileen could continue working alongside Kevin throughout her treatment, while maintaining the activities she enjoyed and spending time with her family. “

Being able to live the best life possible during cancer treatment is so important for both your physical and mental health,” she says. “I was able to do all the things I love, like going swimming three to four times a week and getting away for the weekend with Kevin.”

Looking back, Aileen says she had no reservations about joining the trial.

“Science and medicine can’t advance without research, so I was glad to play my part in helping people like me in the future.”