10 June, 2021

“Everyone has a stereotypical view of the journey, don’t they?” comments Charly McNelis. “There’s an expectation that after treatment, you move on with your life. In my case, that’s not so; this isn’t going away.”

Charly was diagnosed with breast cancer in early March 2020, when lockdowns were starting. She had a left mastectomy and full lymph node clearance surgery later that month. Followed by 18 weeks of chemotherapy from May until September and then five radiotherapy sessions in October.

“The combination of chemotherapy and surgery has put me in early menopause,” she comments. “I’ve discussed taking HRT to alleviate the symptoms and reduce the risk of osteoporosis. I didn’t understand the longer-term impact of menopause.

The symptoms are more extreme because I’m younger, and there’s a huge risk of osteoporosis. I’ve got to learn how to live and manage symptoms that women find hard in their forties and fifties. It’s a real knock-on that I did not anticipate. And then there’s the ripple effect of that gene diagnosis.”

Gene results

Gene test results in October 2020 showed Charly carries a BRCA1 mutation, and it was this that led to her having a preventative mastectomy on the right side, together with the removal of her ovaries and Fallopian tubes in April 2021.

Charly’s daughters (ages 5 and 6) have a 50% chance of inheriting the BRCA1 gene mutation. She also has 11 siblings,  4 of whom so far have tested positive for the faulty gene.

She comments that one of her brothers was waiting on his blood test for prostate cancer, which is also increased with BRCA1 mutations: “While his risk may be small, he has a daughter. She has a 50% chance of having the faulty gene. And my sisters are younger than me – I’m 38 – and they are yet to have children.”

She adds that in addition to the normal big life decisions made in a person’s 20s and 30s, three of her sisters and one brother now have to take into account the impact of the gene diagnosis and tough life decisions about having a family.

And then there are her parents: “One of my parents is the carrier, and you have to tell these two people in their 60s that they’ve potentially given this gene to all their children. The sense of guilt and emotional impacts are huge.”

“Trying to understand what it all means is so difficult,” she says. “Maybe it takes something as extreme as the gene test result for people to realize that they need to look at their diet, lifestyle, and environmental stresses; and learn how to take away those risks.”

Why Breast Cancer UK?

“Research is so important,” she adds. “It’s too late for me and those siblings who have got the mutated gene, but people are going to keep having children, people are going to keep having cancer. So how can we eliminate that risk? We need to do as much as we can on the prevention side and education side.”

That passion for knowledge and giving back are Charly’s trademarks – along with a positive, life-affirming attitude. She entered an extremely difficult physical endurance event to raise money for UK charities. The 105-mile, two-day, multi-discipline Charly’s Angels Rat Race Adventure Challenge endurance event in Scotland is in September.

“I’m cutting it a little bit fine now, as I’m still recovering from surgery,” she comments. “But it doesn’t matter how long it takes me to do the event. It’s just about having a goal and knowing I can still do things. My body can still function.

That’s been one of the hardest things for me over the last year, just that inability to take the dog for a walk or just put my trainers on and go for a run. I’ve really struggled with that. I wanted something that will celebrate my body being this amazing feat of everything that it’s gone through, that it can still go and do the challenge.”

She adds that, at the end of the day, when she finds herself in Scotland with the rain and the cold, that it could be worse: “If I could get through 2020, then this challenge will be easy in comparison.”

The future after treatment

Charly notes that she wants to help cancer charities in more ways than raising much-needed funds: “I want to share my story; be an ambassador for the continued education of awareness and prevention.”

She got involved with BCUK after her younger brother did a charity fundraiser. “He was shocked by my diagnosis,” she explains.

“I am passionate about supporting this charity as I missed a symptom – breast cancer is more than just a lump. And I didn’t fully know how to check my breasts and didn’t do so regularly enough.

I want to help educate other people to avoid them falling into a similar situation. I also want to show my daughters how their health and lifestyle factors are even more important now, due to the BRCA1 gene mutation.”

Charly was a Captain in the Army and then ran a physical training business. She didn’t have an unhealthy lifestyle. She is passionate about helping other people understand they have a lot of control over how to reduce their risk of breast cancer: “I want to help move forward with the research and help understand this gene for my siblings, my daughters, and for other women in the future.”

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