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She was diagnosed with cancer at age 42, just after giving birth to twin boys.
“They were healthy, and the birth went well, and I was healthy and strong, and the last thing ever on my mind would be that I would have a diagnosis of a life-threatening cancer,” recalls Amy Kavanagh-Penney.
It was diagnosed as an unknown primary, and was found in the lymph nodes just above her collar bone.
Kavanagh-Penney would endure a year of treatment that involved surgery, chemotherapy and radiation. After that, she was cancer-free. It seemed everything had returned to normal.
It happened seven years later in 2016.
“I had just started dragon boating with a community team, and during warm-ups with the Avalon Dragons, I happened to look across the circle of women warming up.
“I thought to myself, ‘Wow, that woman has only one breast, and that woman doesn’t have any.’
“It really struck me how they were out there so strong, and healthy, and happy, and paddling and enjoying themselves, and it just sort of stuck with me. That was in about June of 2016, and later on in July of 2016, I discovered a lump myself in my left breast.”
She had just turned 50.
“My surgeon knew that I had had a previous cancer, and I guess she – well, she told me over the phone. So, I guess she thought I was strong enough, I had heard this information before, and thought that I probably knew myself anyways.
“It was quite devastating standing all alone on the phone, with no support, to hear that news. I mean, I can understand, I think the doctor was feeling like, ‘You already know what I’m going to say, and if I just tell you that you need to come in right now, you’re going to know anyway, so I’ll just tell you.’ So, I sympathize with her, too. It’s not easy news to give anybody.”
Research to improve patient care
Kavanagh-Penney’s experience is one of 18 that was documented through video stories in research conducted by Kathleen Sitter, social work associate professor at the University of Calgary and adjunct professor in community health and humanities at Memorial University’s Faculty of Medicine.
Sitter said the goal of the research was to identify ways to improve breast cancer care.
The patient videos were analyzed for key themes, and shown to health practitioner focus groups who discussed how patient recommendations could be implemented at Eastern Health.
Sitter noted the following five key findings:
An understanding of determinants influencing patient treatment decisions.
Accessible and consistent information delivery can mitigate emotional distress while also supporting patient well-being during breast cancer treatment.
The patient navigator plays a critical role in ensuring continuity of care.
A whole person care approach during and after treatment can make a critical difference in the lives of patients.
The importance of sharing patient stories to educate, empower, and influence patient care.
By the end of November, the website patientstories.ca will be online with a report on the findings and recommendations. The report will also be presented to Eastern Health, who Sitter says was supportive of the research.
Today Kavanagh-Penney is 53. August marked three years since she had surgery for breast cancer.
She did the digital storytelling with Sitter while she was still in the first few months of radiation treatment.
“It was an incredible experience. It really helped me to release all of my grief, all of my anger, all of my frustration to know that I was telling my story, and these stories were going to go to the medical school for medical students. It was going to go to professional doctors, and lab technicians and nurses for professional development.
“I could give my story, and know that it was going to these professionals to help them see the perspective of the patient.”
Shortly after the focus groups, Kavanagh-Penney said she was at a check-up with her doctor, who said he saw her video.
“That meant a lot to me for him to realize that there was more to me, and the impact of this diagnosis was more than just what he knew on a clinical basis.”
‘The Cut Of It’
A play based on the research and the women’s stories will be on stage at the LSPU Hall from Nov. 7-10.
‘The Cut Of It’ was written by Meghan Greeley and stars a nine-person cast, including three people with lived experience with breast cancer – notably, Kavanagh-Penney.
She said the play portrays the wide range of experiences people have with breast cancer.
“I think it’s really important for people to see that breast cancer isn’t just all about pink ribbons and ra-ra-ra, let’s save the girls. It’s a much broader experience, and everyone’s experience is different,” said Kavanagh-Penney.
Greeley said she believes there can be instances of gender bias in healthcare, and she hopes research-based performance such as this can help to change perspectives.
Artistic director and actor Ruth Lawrence said the aim is to bring the production across the province.
As well, the script is being offered royalty-free to anyone who would like to perform it across the country. The only condition is that donations be taken at the door for breast cancer support organizations.
Next week’s shows have free admission, but reservations are recommended as the first two nights are already booked. To reserve a ticket, visit lspuhall.ca/event/the-cut-of-it/.
The play will be followed by an audience feedback forum led by Maureen Anonsen. Private supportive counseling will be available on site.