Celebrating the Ovarian Cancer Community

In the past few years I’ve noticed a growing amount of energy and a stronger sense of purpose within the Canadian ovarian cancer community. Not that we haven’t always been a small but passionate group, committed to fighting this disease and the devastation that it inflicts on women and their families. However, I’ve noticed a gradual shift from when I was first treated six or seven years ago. When I was initially diagnosed with ovarian cancer in November 2011, I can remember that Ovarian Cancer Canada’s primary focus seemed to be on awareness and prevention as well as on support and better resources for women already fighting the disease. But now they have adjusted their mandate to involve more advocacy at the level of the federal government. Pushing for additional research and better treatment options for women with ovarian cancer has become their most important objective.

An estimated 2,800 Canadian women are diagnosed with ovarian cancer each year, an estimated 1,800 die from the disease. There is no question that ovarian cancer research is significantly underfunded and that more has to be done to develop better treatments. Scientific progress in the field has been agonizingly slow, more than half of women who are diagnosed with ovarian cancer still die within five years. Like many who have battled the disease, I dream that perhaps one day soon there will be a test that can detect ovarian cancer in its early stages. The majority of women are currently diagnosed after the cancer has spread beyond their reproductive system. Meanwhile, additional research in the area of immunotherapy might give renewed hope to many of us living with ovarian cancer or facing a recurrence.

 

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It was a major triumph for the Canadian ovarian cancer community when the latest federal budget allocated 10 million dollars to ovarian cancer research. Over the past four years I’ve cheered on the efforts of Ovarian Cancer Canada as they relentlessly lobbied the federal government to invest the much needed 10 million. Numerous meetings with survivors on Parliament Hill helped persuade key politicians that better funding is needed to save thousands of lives. “Today, the Government of Canada has taken steps to invest in needed research which will translate into scientific progress against this disease. This announcement makes an important commitment to women’s health and equity in health care – and it is a milestone made possible because of you,” wrote Ovarian Cancer Canada CEO, Elisabeth Baugh.

While it’s true that ovarian cancer is most often diagnosed in women in their fifties or sixties, it’s a myth to believe that it is only an “old woman’s” disease. I was 46 years old when I found out that I had ovarian cancer. I’m always shocked when I learn about women much younger than I was receiving a similar diagnosis, my heart aches as I witness a life-threatening disease try to shatter their hopes and dreams. It hurts me to see the impact that ovarian cancer can have on their relationships, careers and future ability to have children. I have deep admiration for younger ovarian cancer patients, they often possess a wisdom and maturity that seems beyond their tender years.

 

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Ashley Shandrel Luther  (Elly Mayday)
April 15, 1988 — March 1, 2019

I recently mourned when the community lost a powerful advocate and inspirational leader. The internationally renowned model Elly Mayday passed away in March. Elly Mayday’s given name was Ashley Shandrel Luther. She was born on April 15, 1988 and grew up in Aylesbury, Saskatchewan. The body positive model and activist was first diagnosed with ovarian cancer when she was just 25. Elly was diagnosed with Stage 3 ovarian cancer around the same time that she had two modelling contracts offered to her. But instead of stepping out of the light, she welcomed it. “I figured that maybe I could help someone going through something similar, while continuing on with my own dreams. I mean, I was going through it either way, why not make it as positive as possible?” she once said. Elly vigorously pursued modeling while bravely sharing intimate details about her cancer treatments with her huge number of fans and social media followers. Her legacy will continue to be an inspiration to many.

Relying on the Web: What Cancer Patients Should Know

When I was first diagnosed with cancer, I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. Numb and in shock, I would often read over my three-page pathology report, using various websites to meticulously research the strange and frightening terminology it contained.

I’m not alone in feeling this way or in turning to the Internet for help. Nearly half of all Canadian adults are asking questions about cancer, and most turn first to the web for information. The problem is that this self-research is leaving many cancer patients confused, overwhelmed and stressed out. Although we tend to use the Internet as our first resource, most of us don’t have strong faith in the information that it provides.

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According to a new survey commissioned by the Canadian Cancer Society, when it comes to getting definitive cancer information, doctors and healthcare professionals are trusted by 94 per cent of Canadians. In spite of that only eight per cent of Canadians contacted their healthcare team first with questions. Similarly, cancer organizations and charities are trusted by 87 per cent of those seeking information, but less than five per cent of Canadians searching for cancer information reached out to them. People are more skeptical of online sources with only 69 per cent trusting the information. Despite their uncertainty, 85 per cent of people with cancer questions first turned to a search engine.

Why do Canadians so frequently consult the web for information about cancer if they place more confidence in their oncologist and organizations such as the Canadian Cancer Society? According to the survey, convenience is an issue. While the web is easily accessible, more than half of respondents said it is challenging to get time to speak with their healthcare team. But ease of use comes with unexpected side effects. Two-thirds of Internet users felt overwhelmed with information, and 62 per cent felt stressed out and worried, jumping to 70 per cent among Canadians 18 to 34.

There are several alternatives to randomly searching the web that I would strongly recommend.

Use Only Reliable Internet Sites

My cancer facility, the Tom Baker Cancer Centre in Calgary, provides patients with a list of recommend websites. Here are a few of the most essential ones.

American Cancer Society
Canadian Cancer Society
National Cancer Institute
CancerNet
Oncolink

Use The Canadian Cancer Society’s Cancer Information Service

IMG_0117Since 1996, the Canadian Cancer Society has answered 1,250,000 questions through its Cancer Information Service. The Society’s toll-free bilingual Cancer Information Service can be reached at 1-888-939-3333. Assistance is available to cancer patients, caregivers, the general public and healthcare professionals. An information specialist will take all the time you need to answer your questions and provide you with information on the following topics:

  • cancer treatment and side effects
  • clinical trials
  • coping with cancer
  • emotional support services
  • prevention
  • help in the community
  • complementary therapies

The Canadian Cancer Society’s phone line is available during business hours Monday to Friday. You should also note that when you contact the Cancer Information Service for help, your privacy is protected and you will not be asked for donations or put on a mailing list.

Access Support Organizations for Your Specific Cancer Type

Instead of randomly searching the Internet try connecting with an organization that specializes in providing support to individuals with your type of cancer. For example, staff in Ovarian Cancer Canada’s regional offices are available to answer your questions and to provide support via telephone or email. Ovarian Cancer Canada hosts webinars, workshops and events that are relevant to women living with the disease. You can also listen to various educational recordings on their YouTube channel.

Finally, Ovarian Cancer Canada offers a comprehensive guide to support and inform women who have been newly diagnosed with ovarian cancer. The publication is called By Your Side and printed copies of this resource are provided free of charge across Canada. You can Order By Your Side by filling out an online form or by calling 1-877-413-7970 (toll free).

It Takes Lady Balls

As an ovarian cancer patient I’ll admit that I often feel overwhelmed by the dismal survival statistics and apparent futility of fighting such a deadly disease. Approximately 2,800 Canadian women are diagnosed with ovarian cancer each year and five women die from the disease every day. Currently, there are more than 17,000 of us in Canada living with the disease. The relative statistics are similar in the United States where 21,000 women will be diagnosed with ovarian cancer this year, and 14,000 will die from it.

Because the symptoms are usually subtle and there is no reliable screening test, ovarian cancer is frequently misdiagnosed or not discovered until it has reached an advanced stage. This makes treatment difficult, which is a key contributor to its high mortality rate. Ovarian cancer has a five-year survival rate of around 46 per cent, compared to nearly 90 per cent for breast cancer.

Each year at the Ovarian Cancer Canada Walk of Hope I’m proud to join a small but dedicated group of teal shirted survivors. Other participants in this key fundraising event wear white shirts— many in attendance at the walk are the husbands, children or grandchildren of those who have recently passed away. Unfortunately, since so many of us diagnosed with ovarian cancer die quickly after our diagnosis, the support network that typically forms around a cancer patient moves on quickly, creating what some have called a “leaky bucket” of advocates for the disease.

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I was delighted this January when Ovarian Cancer Canada launched Ladyballs, their boldest and most successful marketing campaign to date. Their marketing team knew that to be successful they would need to create a slogan that could be heard above the din of other national campaigns. So rather than focusing on sad facts to illicit sympathy, the team at Ovarian Cancer Canada chose to focus on the tremendous strength of survivors and the power we all have to do something about women’s most fatal cancer.

Marketing executive and ovarian cancer survivor, Lauren Richards, spearheaded Ladyballs. Richards is a former Cossette Media and Starcom MediaVest Group executive who has operated her own Toronto media consultancy since 2013. She enlisted Canadian broadcasters, newspapers, magazines and online publishers to donate several million dollars worth of space and time for the campaign.

Those behind the promotion knew from the start that they were up against organizations that have become brands in and of themselves. For example, Movember is a brand for prostate cancer and Run for the Cure is an iconic brand in the fight against breast cancer. Knowing they had such low awareness and little money, it was a daunting task.

The Ladyballs campaign’s most visible component is a video spot in which women show their so-called “lady balls” by demonstrating chutzpah in the face of pressure or adversity. “Check out the lady balls on her,” one woman says to her co-worker after a female employee disagrees with a male boss’s decision during a meeting. “Look at the lady balls on her,” says a male announcer when another woman goes all-in during a televised poker tournament. In the concluding voiceover an announcer informs viewers that women have balls–their ovaries–and they’re always at risk. Viewers are then directed to donate to the cause at ladyballs.org.

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As expected, the campaign has been highly controversial. Some critics say the ad insults women by comparing a uniquely female body part–the ovaries–to men’s testicles. They say that women don’t have to stoop to that level to promote an informed discussion. However, I personally disagree with this view. I hold the same opinion as Matt Miggins, a nursing student at St. Clair College in Windsor.

“They are not mad five women a day die from this?  I find it ironic that they are mad about words. People should be mad at the fact this is happening to our mothers, sisters and wives,” said Miggins. He said he thinks people should put things into perspective. “People need to ask themselves, if the word balls saves just one life, is it then worth it?”

According to Ovarian Cancer Canada, the campaign has been instrumental in raising awareness. Ladyballs has been responsible for a significant increase in requests for By Your Side, a resource provided to women diagnosed with the disease. It’s also led to a spike in calls to offices across the country, with callers citing the campaign as their reason for reaching out. One woman who heard a Ladyballs radio commercial immediately pledged $100,000 to the organization, and the campaign has garnered approximately $60 million in earned media impressions since its January debut.

Information Please

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynaecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

I read the words endometroid adenocarcinoma for the first time, I didn’t comprehend until much later that I had learned my enemy’s name. Derived from the words “adeno” meaning pertaining to a gland and “carcinoma” meaning a cancerous tumour, the disease is a formidable adversary. One organ that is commonly affected includes the lining of the uterus, or endometrium. Adenocarcinoma is even more frequently diagnosed in the colon or the lungs. My surgical pathology report contained many confusing and ominous terms. I never thought of my reproductive organs as a possible death sentence, but that’s what the report seemed to be implicating. References to yellowish tan neoplasm and a uterine tumour measuring 11 centimetres at its greatest dimension both sickened and terrified me! At another point I started to pity my tiny right ovary. To make the personification complete, I’m sure she fought a valiant battle, but she was strangled by a separate tumour of about 7 centimetres.

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I’ve come a long way since I first read that menacing pathology report nearly a year and a half ago. My ability to deal with medical information and to collaborate with my health care team has improved since then. Today, I offer the following advice to cancer patients and their caregivers. In a broader sense these recommendations could probably apply to anyone facing a serious health crisis.

Knowledge is Power

You are the most important member of your cancer care team and it’s essential to actively participate in your care. Pay close attention throughout the process of your care and participate fully in discussions with your oncologist and other medical specialists. Don’t hesitate to raise any concerns with your oncologist or with other appropriate health care professionals on your cancer team. If something doesn’t seem right or you sense that certain issues aren’t being addressed speak up!

Find the Right Balance

Never in my life have I felt so simultaneously overwhelmed by an abundance of medial information and frustrated by a lack of it. This ambiguity of emotions is understandable in cancer patients as they undergo treatment for some of the most complex and difficult to understand diseases within the realm of medical science. Personally, I’ve discovered that tension and anxiety occur unless a balance of information about my cancer is achieved (not too much and not too little). In my opinion, this ideal equilibrium will vary. It also depends largely on an individual’s psychological makeup and is more often than not impossible to maintain constantly.

Use Only Reliable Sources

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our unique physical, emotional and psychological needs. I appreciate that the most specific and reliable information comes from my oncologist and the related medical professionals on my cancer care team. When I access printed materials or the abundance of online resources that are available, I am highly selective. I’d like to conclude this post by listing a few prominent organizations that I recommend.

The Canadian Cancer Society   http://www.cancer.ca

The American Cancer Society   http://www.cancer.org

CancerNet  http://www.cancer.net/cancer-types/uterine-cancer

 Ovarian Cancer Canada   http://www.ovariancanada.org

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