September Hosts Ovarian Cancer Awareness & International Talk Like A Pirate Day

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There is a month, a walk, a ribbon and more to mark many an occasion. I find it a bit much. It brings out my uncommon cynicism as does all the adoration we shower on “children” to make sure every one is born while we live in communities with ever growing poverty rates for these same creatures who we increasingly refuse even to educate.  Just how much do we love them? I prefer action to words and symbols.

But symbols do matter and they can be a powerful call to action – we only need to think of pink ribbons to see a symbol lead to unending zeal. (And still women die of breast cancer at staggering rates that some argue are minimally changed since the pink ribbon campaigns started.)

September is the month of teal ribbons for ovarian cancer. 138Last Friday was wear teal day. I didn’t, it’s not my thing but I applaud the many who do and use the color, day and month as effective openers to educational conversations. For example, spreading the word to “B-E-A-T” ovarian cancer by sharing the early warning signs of the disease.

B = bloating that is persistent and does not come and go

E = eating less and feeling fuller

A = abdominal or pelvic pain

T = trouble with urination (urgency or frequency)

Women who have these symptoms 12 days in a calendar month should see their doctor. And when they see their doctor they should be prepared to push for adequate testing because such symptoms can be hard to work with. Or, like me, you might have none of them and the cancer has already metastasized to the lungs. Early detection is hard. Prevention is hard. We just don’t have enough tools yet. The funding that might advance cancer knowledge is being cut by our government of and by the 1%.

U.S. President Barack Obama designated September 2013 as National Ovarian Cancer Awareness Month. President Obama lost both his mother and grandmother to this disease and has two young daughters; prevention and early detection should be very much on his mind. Libby’s Hope, an excellent ovarian cancer awareness and survival organization, offers a website full of early detections tips and motivations. Get aware then share. And ask our congress people to stop the Sequester that is slowing down the very cancer research that might unlock more critical mysteries of cancer allowing early detection to be the norm vs the exception.hopestreetsign11

In the meantime, I read with deep contentment the skillful column by Susan Gubar, shared below, who quarantined her cynicism and unleashed her congratulatory nature as she approached dealing with September as Ovarian Cancer Awareness Month with way more elegance than I. Enjoy….

http://well.blogs.nytimes.com/2013/09/12/living-with-cancer-a-rainbow-coalition/?_r=0

SEPTEMBER 12, 2013, 1:35 PM

Living With Cancer: A Rainbow Coalition11well_gubar-tmagArticle

By SUSAN GUBAR

Everyone recognizes the pink ribbon of breast cancer, but fewer know the color of testicular (orchid), uterine (peach), lung (white), pancreatic (purple), or head and neck (burgundy/ivory) cancers. Given current research and treatment, as well as a commitment to equity, is it time to imagine a rainbow coalition?

Breast cancer activists have brilliantly organized to heighten public awareness of a disease that threatens too many women. Support groups, regional conferences, runs, T-shirts, memoirs and photographs raise money for research and help individual women confront a dire diagnosis.

In a post on the Foundation for Women’s Cancer Web site, writer Tranette Ledford worries that she has “the wrong color of cancer.” More than 90,000 American women are diagnosed annually with “below the belt” cancers, but they do not get the attention, information and care they need.

“When we look at cancer through rose colored glasses, we save thousands of lives,” Ms. Ledford wrote. “We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer.”

Even though TV ads tell us about erectile dysfunction and prostate cancer (light blue), are we leery of publicly discussing “lady parts”? I take this to be a serious question about the debilitating silence surrounding gynecological cancers.

I wonder as well about colorectal cancers (dark blue) that afflict men as well as women. Any disease involving excremental matters seems to remain unspeakable for the most part. It is difficult to ascertain the color of anal cancer, but I believe it is purple/green. Also marginalized in representation and debate are men and women dealing with cancers that afflict smaller populations — like multiple myeloma (burgundy), carcinoid cancer (zebra) or thyroid cancer (teal/pink/blue).

American history has taught us that separate is not equal.

In the midst of these competing claims for attention and support, cancer research is undergoing a paradigm shift. We are informed that there are several quite distinct types of, say, breast cancer that must be treated differently. Just as important, a single genetic mutation can cause cancers originating in different body parts.

Today a number of drugs work on multiple cancers. Gleevec has been used on leukemia (orange), but also on gastrointestinal stromal tumors (periwinkle). Avastin is effective for certain colorectal, nonsmall cell lung, brain (gray), ovarian (teal) and kidney cancers (also orange—there are only so many colors to go round). Doctors can now prolong lives by prescribing Abraxane for breast, lung and pancreatic malignancies.

Perhaps the organ of origin is less important than other factors. In this context, the balkanization of cancer identity politics seems absurd. Why should people with melanoma (black) contend against people with liver cancer (emerald green) over limited resources? Instead of haggling over a meager slice of the pie, the breast surgeon and author Dr. Susan Love has argued, we should demand a bigger pie.

Wouldn’t we have more clout banding together not only to support research into prevention, detection and cure but also to counter the exorbitant expense of treatment? The price of some of the newer drugs is sky high. Gleevec can cost $100,000 a year, Avastin $100,000 a year, Abraxane $96,000 a year.

The issue of the colors of cancer was raised by Ms. Ledford to broadcast the fact that September is National Gynecological Cancer Awareness Month (which is sometimes called National Ovarian Cancer Awareness Month). There is cause for celebration among this constituency because a new study in the journal Cancer suggests that the biomarker CA125, when used over time to monitor change, may finally provide a much needed detection tool for ovarian cancer. Currently 75 percent of those with diagnoses deal with late-stage disease and miserable mortality statistics, as I do.

On the first day of National Gynecological Cancer Awareness Month I discovered that the experimental drug extending my life has been so successful that it will be moved from a Phase 1 to a Phase 3 clinical trial. Unlike the Phase 1 trial, which studied the drug in various cancers, the Phase 3 trial will be open only to breast cancer patients. I very much hope it will help the women enlisted, but what about those excluded?

Maybe cancer research and fundraising can’t function without organ-related identifications. Pharmaceutical companies are drawn to large markets. Money is often donated by people honoring a beloved friend or relative felled by a particular form of cancer.

Important as the ribbons are, however, can their use inadvertently set advocates against one another? Without relinquishing the colors, what would it mean to support people dealing with every type of cancer? In the 21st century, children and adults with cancer are unfortunately legion.

We may have something to gain from dreaming a dream that really can come true of banding together under a symbol adopted by a number of social justice movements: the spectrum of a rainbow coalition. I would like to wear that sort of bracelet, though I have never seen one in the hospital gift shop.

This idea comes to me during National Gynecological or Ovarian Cancer Awareness Month. The ovaries are where we all come from.

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8 responses »

  1. Interesting – September is both ovarian cancer awareness and childhood cancer awareness month. The ribbon for childhood cancer is gold. Anyhow- I pay attention because it was blogs of parents that told me all about the wonders of MSKCC- where my dad was treating. At some point I started following Erin Buenger’s blog. Erin was going to be president, and had already lobbied congress- in DC- for funding for childhood cancer awareness. (If you have time and want to read about the Amazing Erin, google Erin Buenger, Texas – the day she died the world lost an amazing young activist). Thanks for letting me know that the month is doubly important. Oh, and if you want to get all rilled up- the funding rates for childhood cancer are staggeringly low, especially considering it is the one leading causes of death among the below 18s.

    Thanks again for your writing Marcy. My wounds of loosing my dear ones are still raw and your writing helps to soothe them. I don’t know why, but it does.

  2. Marcy, can you clarify this for me? You’re saying that the UPENN vaccine trial that is currently not completed phase 1 is skipping to phase 3, and only doing breast cancer? I thought the current trial is specifically for OVCA? I got an email from UPENN trying to recruit patients, and it was only for OVCA. How can they be switching to breast cancer? Isn’t it targeting a totally different protein?

  3. Oh, I see, it was from Susan Gubar’s column. Oops! But still, I wonder what trial she is on that moved from phase 1 to phase 3 because it’s doing so well?

  4. What a great idea for a rainbow bracelet. I would buy & distribute them by the box load! I hope someone with the know how & resources will take up the challenge. It’s an idea with great potential for fundraising. Sometimes the simplest things are the best!

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