Rethinking Breast Cancer: Taking a Stand with the Big Dawg from Prostate Cancer Canada

Just a few days ago, I sat down with Rocco Rossi – the CEO of Prostate Cancer Canada. It was a friendly “get to know you” over coffee, which I’d had to postpone when my mum was hospitalized for one of the cascading issues that are accompanying her into her 90s. Rocco had offered kind words when I postponed our 1st meeting at the last minute. He’s from a big Italian family where mums carry considerable clout, and I was touched by his gesture.

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Sitting down with him in person, I got to meet the Rocco Rossi that once glared down like a hit man from the 2010 campaign posters that covered Toronto when he ran for Mayor. Mr. Rossi is known as a Big Dawg in many high stakes arenas – including federal, provincial and municipal politics – carrying the banner of first the Liberals and then the PCs. I had read his blogs about the lifelong support of his big, hard-working, Italian family, and how with their encouragement and his own perseverance he earned an elite education at Princeton and made a name in the world of the big league beer wars. When his mentor and friend dried suddenly and far too early from a heart attack, he heard the Cri du Coeur and moved his corporate fundraising and strategic talents to Heart and Stroke and the nonprofit sector.  Then Prostate Cancer Canada stepped up their game and picked him as CEO a few years back.

Rossi’s a commanding, articulate advocate and I was more than a bit surprised with the shift in tone from the formerly conservative prostate cancer group. He was briefing me on a complex, gender equity/evidential research/health policy problem that could be solved in a $40 heartbeat – if you accept his case for support.

DOING THE RIGHT THING FOR THE RIGHTEOUS REASON

In a nutshell, Rocco and the newly emerging, more radicalized (finally!) goodfellas at Prostate Cancer Canada are lobbying the provincial government to cover the $40 cost for a PSA in Ontario – just as other provinces are doing. To be clear – PCC isn’t demanding that the province start a new prostate cancer screening program – they (sort of) agree the evidence doesn’t’ yet support a PSA screening program for every guy in the province. They just want the province to pay for a PSA if and when a doctor orders the test. It’s a small ask. And, in my opinion, it’s the right thing to do, even though the scientific evidence for PSA screening is sparse.

Most of the time, I agree with Andre Picard, the G&M’s Health Policy reporter extraordinaire – about what values should drive publicly funded health policy. Canadians and their doctors, as well as health care decision-makers should be able to rely on accurate data to understand cancer screening benefits and risks. Recent studies have highlighted the problem of over-diagnosis as a potential harm of cancer screening.  “Over-diagnosed” cancer cases are actual cancer cases which never would have caused a problem and would never have been detected in a patient’s lifetime without screening. That’s the good news – there are harmless cancers.

But politicians and governments are not ready to pull the plug on provincial mammography screening programs for women aged between 50 and 69 – and they shouldn’t be. It’s hard to separate the harmful cancers from the harmless ones, so we settle for the “shotgun” approach to screening with a flawed tool until something better comes along. There is a role for screening mammography while we invest in the research that will identify the genetic marker(s) that will distinguish cancer cells from normal cells, long before any high-tech image can find lumps.

PITTING SCIENCE AGAINST EMOTION

But the powerful narrative among breast cancer groups – that “Screening saves lives” prostelizes that all mammography screening is good and it pits science against emotion. I don’t want to see men with prostate cancer, like women with breast cancer before them, bravely recounting how they narrowly escaped death because their cancer was detected early.  It’s wishful thinking.

The guys advocating on behalf of Prostate Cancer Canada can kick it up a notch and improve their messages about PSA and the reasons why the province should pay for the test. The province should pay not because the test works so well, or because men deserve equity with women who have access to flawed cancer screening.  PSA tests should be covered because paying for a test when a man and his doctor have had a conversation and decided its useful, and a man does something with that information, represents a tectonic shift in men’s’ health behaviours.  Getting men to talk to their doctors about cancer and take action is a breakthrough that can change the culture for cancer screening. And not just for men’s cancer.

If you look at the cost of population-based cancer screening programs and compare it to what we get back in terms of reducing deaths, it’s clear that for every dollar spent on screening, the return is much better for cervical cancer screening and even better for colorectal cancer screening than it is for breast cancer screening and prostate cancer screening.  Imagine what might happen if men and women started talking about their risks and benefits for all kinds of screening?

Which brings me to why I think the province should pay for (another) questionable cancer test.

LESSONS LEARNED FROM BREAST CANCER

The most important lesson from the past 25 years in the breast cancer movement is that women survivors changed everything about the way the disease was talked about, treated, funded, and researched. We didn’t change the outcomes as much as we changed the culture.  Women – both feminist and not – rose up and raised awareness, expectations, money and respect about the disease. Because of that uprising, women diagnosed with breast cancer today have a modestly better chance of surviving – mostly because of better treatments and not more screening. They have a rock solid likelihood of being told the full range of surgical treatment options – and none of them will wake up from a routine biopsy to find their breast gone. Women today will have a much easier – though still not routine – chance of finding another woman with breast cancer to talk to, information about the disease and a support group in their community. Not because doctors, governments or hospitals suddenly decided it was  cheaper, more effective and more humane to bring about these changes – but because women demanded them.  Raising expectations for excellence was a direct result of those actions, even when the science and the standards were imperfect and the outcomes less than stellar.

CHANGING THE CULTURE OF CANCER

Changing the culture of cancer, from one of fear, stigma, isolation and biomedical determination, has taken a lifetime. While we are justifiably proud of the progress we’ve made in the breast cancer movement, we can’t ignore the fact that we have done little to transcend the cancer gender barricades, and even less for other cancers and for prevention in general. We have not traditionally partnered with prostate cancer groups to help lift up the men in our lives, and we’ve done next to nothing to help underfunded areas in pancreatic, colon, ovarian, and kidney cancers. The public has not been engaged or given tools to take control of cancer in their homes, schools, workplaces and communities. Canadians have grown weary of our ribbons, runs and poster-girls and guys for the cause, as evidenced in the dramatic declines in donations to our more than 200 cancer charities, big and small.

Its time to redefine the cancer movement to include men with prostate cancer and men and women at risk (all of us over 50) of colon cancer, and those of us who are at high risk for lung cancer because we smoked or worked in occupations that put us at risk, and Millenials who expect healthy, balanced work/home lives, or any of the 33 million reasons why every Canadian should be putting a Big Dawg in the fight and standing up to cancer.

What’s good and what’s smart about asking the province to pay for a PSA test, when its ordered by a doctor, is that when there’s no out of pocket cost, there’s a much better chance that the guy who is looking for every excuse to do nothing, will have one less excuse to do nothing. In other words, I agree with the “make it hard to do nothing” approach. I think if we make it easy for men, it can be a tipping point for changing the culture of cancer in Canada from one of fear, frustration and confusion to one of strength, knowledge and control.

After years of grumbling in the dust of the breast cancer movement, Prostate Cancer Canada landed a windfall when the Movember phenomena blew across Canadian campuses leaving behind donations of more than $22M in 2010 alone. They’ve got deep pockets, a Big Dawg, and an ask to government that should make it hard to say no.

It’s long past time to bring the Big Dawgs into the fight to take control of cancer.

“Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out.” — Vaclav Havel

By Pat Kelly

Check out the PSA Tests for Ontario campaign at:

http://www.psatestsforontario.ca/?utm_campaign=social&utm_source=facebook.com&utm_medium=psatests

 

Getting Past Persuasion – Understanding Cancer Screening

Myth 02: There are no signs or symptoms of cancer

Truth: For many cancers, there are screening tests, warning signs and symptoms, and the benefits of early detection are indisputable.

Another cancer myth gets busted at World Cancer Day 2014

Although every province and territory offers evidence-based screening programs for breast, cervical and colon cancers, too many Canadians don’t have the knowledge they need to make informed decisions about screening.

According to a recent Canadian survey 81% of Canadians are aware that cancer screening tests exist and they recognize the benefits of screening. However, 60% don’t understand that screening is a “health behaviour” that is offered free of charge thru provincial government cancer agencies to everyone, including healthy people, based on age and other risk factors.  People in the GTA have some of the lowest participation rates in Canada in our provincial screening programs.

The challenge is finding the right way to communicate about screening in a way that supports informed decision-making. We need to overcome the clutter, confusion and mixed messages so often promoted to the public.

In order to get past persuasion to informed decision making, we want to make it easy for doctors and patients to see the key data about screening tests’ benefits and harms.  We are creating innovative programs and campaigns targeted at new audiences to build understanding and informed decision-making about cancer.

On February 4, 2014 the Campaign to Control Cancer, along with partners from ReThink Breast Cancer, the Youth Advocacy Training Institute (YATI), the Colorectal Cancer Association of Canada and Let’s Talk Science will be delivering a curriculum about cancer control and risk reduction to students from grades 6-8. Together, we will educate and empower young people from the Greater Toronto Area and provide them with the advocacy skills they need to support healthy behaviours in their families, schools and communities.

A new generation of advocates, researchers, physicians and community support workers is becoming inspired to take on the challenges of cancer control. C2CC is mobilizing students across Ontario – come hear what they have to say on World Cancer Day.

Date:             Tuesday, February 4th, 2014

Time:              5:00 – 8:00 PM

Location:        MaRS Centre Auditorium, 101 College Street, Toronto

Cost:              Free

Register:        http://bit.ly/1cU5uDC

Why We Need to Talk About Cancer

 

Why Did Angelina Jolie, Terry Fox, Lance Armstrong, Nancy Reagan and Siddhartha Mukherjee Need to Talk About Cancer?

Myth 01: We don’t need to talk about cancer

Truth: While cancer can be a difficult topic to address, particularly in some cultures and settings, dealing with the disease openly can improve outcomes at an individual, community and policy level.

Another cancer myth gets busted at World Cancer Day 2014

Talking about cancer has long been considered taboo in many cultures – and silence might have been warranted in ancient and medieval times.  Until advances in anaesthesia and antibiotics, most surgical operations were performed in dank chambers or barbershops.   No wonder people fled from doctors and sought the comfort and silence of practitioners who offered goat dung, laying on of hands or blessing of water.  When alcohol and opium were the only relief for intractable pain, it may have seemed more humane to whisper about cancer.  But today, cancer isn’t treated with a soldering iron heated on coals or burning with sulphuric acid paste.
People from all walks of life are talking because talking about cancer can change outcomes:
  • by making patients feel less fearful and alone;
  • by providing support to families and friends;
  • by sharing research findings and advances across systems and borders;
  • by providing cancer professionals with opportunities to attend digital and real-time international conferences, events, educational opportunities to ensure awareness of and application of effective new treatments;
  • by raising questions about the direction and impact of research and public policy;
  • by raising new funds for research and treatment;
  • by raising the profile of the value of clinical trials;
  • By engaging people everywhere thru storytelling and collective action.

Negative public perception of cancer can stifle informed public discussion and perpetuate a cycle of fear and misinformation that hinders raising awareness about cancer prevention and the importance of early detection. Even within highly engaged communities, the level of knowledge of cancer and the willingness to talk about it with friends and family can be low. Our Engaging Emerging Leaders in Cancer Control (E2C2) changed the game by mobilizing a network of engaged student leaders to take innovative-province wide action for a healthy campus, healthy community development and cancer control. 5 campaigns at 5 universities connected healthy choices today, policy change and student engagement for long term health and wellness. 

To hear from E2C2 student leaders join us on February 4 for World Cancer Day:

Date:           Tuesday, February 4th, 2014

Time:           5:00 – 8:00 PM

Location:     MaRS Centre Auditorium 101 College Street, Toronto

Cost:           Free

Register Here:

http://www.eventbrite.ca/e/world-cancer-day-tickets10020663073?aff=eorg