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Fear of recurrence runs high for triple negative breast cancer patient

Montreal resident Kelina feels like a “sitting duck” because although researchers are working hard to find treatments for triple negative breast cancer, there are no targeted therapies available to this cancer, which was diagnosed in December 2015. 

She had a mastectomy and chemotherapy, but there are no further treatments for her cancer, which is a more aggressive and has a greater possibility of recurrence in the first five years than other forms of the disease.

" I am focusing on the things within my control like eating healthier, exercising regularly, participating in clinical trials when possible, using mindfulness meditation to help me cope, and having regular medical follow-up with my cancer specialists and periodic tests."

Kelina, 51, is a two-time breast cancer survivor.  Her first diagnosis was in December 2011 and her second in December 2015.  The first cancer was judged 8 percent estrogen receptor positive, and she was treated with chemotherapy, lumpectomy, and radiation.  She also took part in a clinical trial to see whether Herceptin would help.

Both times her cancer was Stage II A. The first tumor measured 4.2 cm and the second measured 2.1 cm.  Both were in her right breast.

Before cancer, Kelina was a hospital social worker for about 20 years, a job she loved.  Now she is on long-term disability leave because of the lingering cognitive difficulties caused by chemotherapy.

“I don’t have as much stamina,” she says.  “Everything takes more time.  I can’t multitask or retain information.  I can only process one instruction at a time.  I forget to turn the stove off.  I have a checklist at the front door to make sure I don’t forget anything when I go out.  I have difficulty thinking of words I want to say.  I mistake one object for another.  I regularly lose my bus pass, keys, and papers and sometimes get disoriented when I’m out walking or in the metro. i also have limited energy and get fatigued more easily than before.”

Kelina says working with her occupational therapist to learn stategies to cope with the cognitive deficits "has been my saving grace."

She is also grateful for the support that she received from family, friends, and neighbours.  During her treatments, her sisters called daily, and her brother sent her a treasured gift:  a stuffed animal that she had given him 30 years before.  Her husband supported her, took care of running the household, and drove her to appointments.

Kelina says having to leave her job is one of the most difficult parts of being diagnosed with this second breast cancer.  “Who am I now and what is my role if I’m not working?” she asks.  “It’s hard to see colleagues at the hospital where I go for treatment and where I used to work.”

Another difficulty was caring for her mother-in-law with Alzheimer’s disease at the time of her first cancer diagnosis.  It was impossible, so Kelina’s mother-in-law was placed in a long-term care facility.

Kelina says she didn’t have a great body image before her cancer, but a mastectomy has intensified those feelings. "It is a great adjustment, an ongoing process of adaptation. Although I have experienced a lot of losses along the way, I am so grateful all the specialists, having access to the latest treatments and having a private insurance that supports me and my family.

“It is often hard for me to feel beautiful.  My hair didn’t grow back totally after the second cancer,” she says.

In the end she says, "I focus on being thankful for this body that has supported me twice through cancer treatments."

Depression is another issue for Kelina.  “Both bodily and mentally, it makes me feel less able,” she says.  To cope, she had support from the psychosocial oncology team, and she works on mindfulness and living in the moment, rather than dwelling on the past or fearing the future.  She also tries to structure her life to keep her motivated. She takes on projects such as knitting and exercise, and she volunteers at a community library and long-term care facility.  “Volunteering makes me feel like I have something to contribute,” she says.

She is also doing all she can to learn to advocate for herself so she can be not just a patient, but a partner with her doctors in her cancer care.

 Kelina notes that each person who lives with triple negative breast cancer will have their own specific challenges and each will have their own ways of coping.

Overall, Kelina shares that "Although this second cancer had has been unpredictable and continues to have many unexpected consequences, I remain hopeful knowing that so much research is ongoing in the field of triple negative breast cancer."

Photo by Mihail Macri on Unsplash