Please, No More Disease Olympics

Courtesy of Musa Mayer, www.advancedbc.org

Courtesy of Musa Mayer, http://www.advancedbc.org

In response to this pancreatic cancer group’s “I wish” campaign:

Pancreatic cancer and metastatic breast cancer share some things in common.

>Poor median survival. Median survival for metastatic breast cancer is 2.5 to 3 years. Ultimately no one “beats it.”

>Woefully underfunded research. Less than  5% of all cancer research funding is allocated to metastatic breast cancer. (ALL metastatic cancer research is underfunded.)

>Limited surgical options. Metastatic breast cancer spreads to bone, brain, lung and liver. It can’t be cut be cut out.

When you quote a five-year 87% survival rate for breast cancer, please understand the context.

>Those statistics are for early stage breast cancer; not metastatic disease.

>People die of metastatic disease, not primary breast cancer.

>Breast cancer is not one disease.

>Survival, mortality and incidence are not the same.

>Mortality numbers tell the story more precisely than survival numbers. Breast cancer kills 40,000 annually in the US and half a million worldwide.

>Screening skews the survival numbers. The more we screen, the more we diagnose and treat people with breast cancers that would not have been a threat to their lives (some DCIS, other slow growing invasive breast cancers, and others that are dormant or regressive); so it looks like survival for early stage breast cancer is 98 percent in the US.

>But this is only a 5-year survival number—and includes the 20-30 percent of people who will have a metastatic recurrence and die of the disease later.

>The incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

Suggesting breast cancer is “enviable” unfortunately may give people the idea that everyone who has it is cured. With these “great” numbers in mind, perhaps people will be tempted to skip their regular doctor and screening appointments–why worry? By the “I Wish…” campaign’s reckoning this is a “good” cancer.

Early detection is certainly helpful, but it is NOT a breast cancer cure. Indeed, early detection carries its own set of complexities–over treatment, a false sense of security, etc. (See http://mbcnbuzz.wordpress.com/2013/04/27/our-feel-good-war-on-breast-cancer-mbcn-responds/ )

Finally, I concur with the American Cancer Society’s Otis Brawley: “Basic scientific research, some of it not focused on a particular cancer site, has given us so much insight into cancer that we can actually see a day in the very near future in which it doesn’t even matter where the cancer started. In other words, the clinician is not going to be interested in whether it’s lung cancer or breast cancer or colon cancer. The significant questions for treatment will be: Which genes are mutated? Which genes are turned on? Which genes are turned off? Which genes are amplified?”

Please no more Disease Olympics. Funding the best science helps us all.

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7 thoughts on “Please, No More Disease Olympics

  1. Elizabeth J. says:

    Amen. Couldn’t have been said better!

  2. Thank you. And especially for noting not all breast cancers are the same. For example, if mine recurs, I don’t get the median of 2.5 – 3 years. The nasty kind I was “lucky” enough to grow kills in about 9 months.

    It saddens me that one group with heartfelt basic needs has pitted itself against another group with heartfelt basic needs. We are the same in our humanity more than we are different in our diseases.

  3. katherinembc says:

    Mukherjee concluded by imagining the first known breast cancer patient – the Persian queen Atossa – receiving treatment through the ages. In 2500 BC, her ailment had a name, but no treatment. In her time, around 500 BC, she had her Greek slave perform a primitive lumpectomy…. in 1890, she would undergo a radical mastectomy. In the early 20th century, she would try radiation; in the 1950s, a localized mastectomy plus radiation. In the 1970s and 80s, she would try new therapies. And in the 1990s, genome sequencing would have targeted what mutation Atossa carried.

    Today, Atossa would live decades longer than she would have in the past. But, Mukherjee noted, if she suffered metastatic pancreatic cancer, her prognosis wouldn’t change more than a few months over the last 2,500 years. Doctors still don’t know what makes, for instance, pancreatic or gall bladder cancer so different from Atossa’s breast cancer. But, Mukherjee said, we might do well to focus on prolonging life rather than eliminating death: “The war on cancer may be won by redefining victory.”

    http://www.zocalopublicsquare.org/2011/01/12/telling-the-story-of-cancer/events/the-takeaway/

  4. Jason Wong says:

    Hello Catherine,

    We had a Twitter conversation just yesterday in regards to your interview on the CBC’s “The Current”. Having a chance to listen to the entire segment in full, I wanted to first thank you for separating “awareness” and “education”.

    The one statement that you said in the interview that resounded with me the most was: “… we, within the breast cancer community, are the inconvenient truth… our story is generally not told at all.” Current awareness campaigns have made breast cancer “sexy”, with this misguidance has glaze over so many of the hard truths, and do service to only a few: it has ignored the stories of those with metastatic cancer, and it has oversimplified breast cancer to the general public.

    Thank you for this, and for a new, much better mantra of “funding the best science helps us all.”

    Yours truly,
    Jason Wong

  5. […] did not realize how poorly funded ALL metastatic cancer research […]

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