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The Voice of People With Breast Cancer

Education

Our Voices Blog


Contributor : CBCN Team

Remembering Laurie Kingston

It seems impossible to try to capture the essence of who someone is, was, through just words. Because there are no words that really do justice to honour a person like Laurie Kingston and how her life touched so many people, people she didn’t even know. It is with great sadness that we mourn the loss of Laurie, one of CBCN’s board members, who passed away on January 8, 2018.

What made a difference when managing my treatment side effects

I was not prepared for the number of decisions regarding treatment that needed to be made from cancer diagnosis to treatment options.  It was both exhausting and overwhelming – how does one make sound life-changing decisions when there are so many options and choices? I learned to trust myself and be my own advocate as I navigated through the many decision points.

6 ways to manage joint pain

Joint pain is often a side effect of breast cancer medications, especially tamoxifen and aromatase inhibitors, which people are often prescribed for years. If you happen to be someone who experiences this, you know that it can range from being mildly annoying to having a debilitating effect on your daily life.

Adjusting to life after treatment ends

Your surgery, chemotherapy, and radiation treatments are finished.  You think you should be celebrating your return to normal.  But you don’t feel the same as you did before your cancer diagnosis.  Breast cancer has changed you in many ways:  physically, emotionally, spiritually.

What’s important for patients to know from the 2017 San Antonio Breast Cancer Symposium?

Every year clinicians, researchers, patient advocates and industry members head to Texas to share the latest breakthroughs in breast cancer research. It’s a key conference to learn about new treatments or new standards of care for breast cancer patients. Here’s some of the highlights that have the most impact on patient care today:

Putting patients first - Moving research into the real world

This year I was honoured to participate as a patient representative on the steering committee of the Canadian Cancer Research Conference hosted by the Canadian Cancer Research Alliance at the beginning of November. 

Wanna know where your money goes?

This holiday season consider adding CBCN to your list for charitable giving! Here’s what you’ll be supporting.

Ask an expert: febrile neutropenia explained

Febrile neutropenia, or FN, is a common and potentially serious side effect of chemotherapy treatment.

Improving your body image after your mastectomy

Struggling with body image is an age-old tradition for women. We can be so critical in how we see ourselves. Too fat, too skinny, bad skin, bad hair…every woman has one aspect of their bodies that they do not like or wish they could change. Add getting breast cancer to the mix and all those insecurities get amplified.

Metastatic patient faces a roller coaster of emotions

For Naomi Pickersgill, living with metastatic breast cancer and being confronted with her own mortality has been a “roller coaster of emotions.”

9 self-care tips for getting through radiation

If you are receiving radiation, you’ll know that there are often side effects that range from mildly annoying to severely debilitating. The self-care plan outlined by your medical team can help reduce the redness, pain, and irritation that come with radiation dermatitis.

Shades of Grey - Patient Advocacy with Integrity

Increasingly the not-for-profit advocacy world has been clouded with criticism of industry funding. Many critics believe that any organization that receives funding from the pharmaceutical industry is automatically biased, but this ignores the great pains that health charities often go through to remain unbiased, ethical and credible. And it certainly does not reflect the patient-centric approach that CBCN takes.

The Who, What, Why of Mindfulness Exercises for Women with Advanced Breast Cancer (ABC)

Many women are living longer with ABC.  Finding ways to cope with cancer’s various stresses becomes critical to leading satisfying longer lives. 

Living with mbc and learning to celebrate each day

Adriana Capozzi of Bradford, Ontario, was diagnosed in October 2014 with HER2-positive, Stage III breast cancer.  She received four months of chemotherapy and one year of Herceptin, along with a bilateral mastectomy and 25 rounds of radiation.

Patients are having their say in research priorities for metastatic breast cancer

The Canadian Metastatic Breast Cancer Priority Setting Partnership is a group of physicians, patients, and patient family members with the goal of identifying priorities in research by the people most affected by the disease. 

If I Could Save Time in a Bottle

I have never been a fan of roller coasters, too much up and down, made me feel sick.  Ironically, my life seems to have become a gigantic roller coaster ride! 

Metastatic breast cancer’s silver lining

For Shelley Scott of Winnipeg, a metastatic breast cancer diagnosis in November 2016 had a silver lining.

“It helped me appreciate the moments of my life rather than worrying about what might be, which is kind of a gift,” she says.

She tells the story of two coworkers she knew who planned a big trip for the time when they both were retired.  They never made the trip because one of them died.

Metastatic breast cancer has made her a fighter

In August 2016, Erin Richard of Sydney, Nova Scotia was diagnosed with triple negative metastatic breast cancer.  She was only 39 years old.

In search of timely and equitable access to drugs

I learned about “timely and equitable access” to oncology drugs at the Canadian Breast Cancer Network's metastatic breast cancer advocacy training in 2013. I was the first in Canada prescribed Perjeta, days after Health Canada approved the drug. My oncologist shared exciting trial results about dual blockade (using two drugs simultaneously against breast cancer). The trastuzumab emtansine (TDM-1) trial had closed days earlier. Another combo was available but it was “back pocket.” The caveat was that it wasn’t funded but my extended health insurance benefits agreed to pay. On route to my first infusion, I penned a sign: BELIEVE. We did. I had dozens of liver and lymph mets and my liver was failing. After two rounds, I had normal liver enzymes and after three, normal tumour markers.

Fighting for life-saving metastatic drug access

I was born and raised in Southern Alberta and moved to Calgary to attend university and eventually raise my family here.  I am an active senior who enjoys singing with a Calgary performing group, travelling with my husband, watching sports and movies on TV, spending time with my two daughters, who both live in Calgary, keeping in touch with my granddaughter, who now lives in Victoria, and watching my grandson grow up and enjoy his activities.