Tuesday, October 12, 2010

Cancer Isn't Pink

Cancer Registry by Regina Holliday
There's nothing pink about cancer.  
Cancer is uncontrolled cellular growth. Cancer cells are set off by processes not yet understood, especially in breast cancer. Cancer cells multiply, then invade, choke off, and ultimately can kill its host if not surgically removed, poisoned by chemicals or burned by radiation.  Sometimes a cure demands all that plus hormonal therapy.
Cancer appears in sentences with words like lymphatic, salvage therapy or necrotic. I've seen necrotic tissue once. Once was enough.  It wasn't pink.
When I think pink for cancer awareness what comes to mind is My Little Pony or the color of bedrooms where little girls dream sweet dreams. Pink is a color toward dawn, when the sky begins to change and the possibility of a new day opens before you.  

Since my diagnosis I’ve met women with almost every form of breast cancer. The combination of mammography, individual breast health awareness and more effective treatments have led to a 30% drop in the mortality rate from breast cancer.  For the majority of us -- around 75% -- our walk through cancer treatment is a one-time event. But this isn't the case for every woman.
Before I finished treatment in 2000 I had attended the funerals of two young women diagnosed with inflammatory breast cancer, a very rare and the most aggressive form of the disease there is.  
Theresa Walleye showed me how to laugh with cancer; Judy Hallinan taught me about faith and friendship. The day following my reconstruction (when I was so drugged I had no idea I was even in pain) Judy stood by my bed, clapping her hands with happiness. “Oh,” she said, “you have a new booby," as though this was the coolest thing since sliced bread.
A year after that her cancer recurred in the pleura of her lung. Toward the end of her life, when her breathing became more impaired, her face inevitably changed.
     There wasn't one damn pink thing about that, either.
In inflammatory breast cancer, there is almost never a lump. The cancer cells actually BLOCK the lymphatic vessels, leading to the characteristic red and swollen appearance of the breast. The skin is often warm and dimpled, and the nipple in many cases retracts and sometimes inverts.  There is a high incidence of IBC in northern Africa (especially Tunisia -- where it is as high as 23% of all breast cancer cases) and when it is diagnosed in African-American women in the U.S., they are typically younger than the median age of 53.
Here’s one dilemma:  Unusual and rare cancers do not attract research dollars.  IBC is complex and confounding.  It is not diagnosed by simple biopsy, but a combination of presenting symptoms.
Curious about this, I wrote to both the National Breast Cancer Coalition, which has set 2020 (arbitrarily?) as the year to end cancer in its latest fund-raising campaign, and Komen-Houston to ask about their funding for IBC. So far I have not received a response from either organization. Then I checked BreastCancerTrial.org where I didn't find anything, and then clinicaltrials.gov. Of the 20 trials resulting when I searched “inflammatory breast cancer” only one was a direct match -- and it's closed.
So there are times when I think pink but see red.

Tomorrow: what now, what next.

Regina Holliday is an advocate and artist who uses her talent to promote health reform and patient rights. You can find her on Twitter at @ReginaHolliday. Please visit her blog at http://reginaholliday.blogspot.com/.


Annemieke said...

Dear jody,

I totally agree with you, nothing pink about cancer, although....... I hate pink and I hate cancer!
But I see your point and agree: it's strange to take a color associated with sweet, innocent (and yes, women) with something as ugly as cancer. It is beyond words IBC doesn't "attract" enough money to research! In that sense red is a better color, very angry about that! Thanks for this great blog, love. Annemieke

Jody said...

Thanks so much for that. I was talking with Colleen (@SharingStrength) yesterday about the fine line between advocating for much-needed research and frightening women unnecessarily.

Scientists have known for years that IBC is a difficult cancer. But if we are to get anywhere in finding cures then -- as advocates -- we need to understand what we are dealing with.

Thanks for reading.

BreastCancerSisterhood.com said...

I think everyone is super saturated with breast cancer pink. It's a happy color and a marketers dream, but for those of us, fighting in the trenches, it's offensive. When I was thinking about the design and logo for BreastCancerSisterhood.com, the first thing I knew was there would be no pink.

You bring up an alarming point about the lack of effort behind IBC. I suspect that's because fewer women have this form of breast cancer, which translates into less interest & less research dollars. The person, institution or big pharma who develops "the cure" or significantly advances the science toward the cure will get more "bang for their buck" & let's not forget glory, if it's attached to a more common form of the disease. This is a crass statement, but follow the money, honey.


Deana Goldasich said...
This comment has been removed by the author.
Deana Goldasich said...

Oh this was so hard to read. First the tears and the then the shared anger. Thank you, Jody, for putting my annoyance into words. You can't wrap such a heinous disease up in pretty pink bows. There has always been something that irked me about the pink thing. I know we all must put up with it in the interest of the bigger cause, but your post is a reminder that IBC and breast cancer as a whole are far from dainty, pink or pretty.

Jody said...

I have tried to write about this a number of times, and yet, still didn't due either Theresa or Judy justice. That old sorrow comes up into my chest and I can't see my way through it. But I'm so glad if the post helped you, and your memories. This is one way we can keep them going; and also, by transforming the grief into understanding of what the disease is and how we can go get it.

Not long after I posted this a wonderful researcher at MD Anderson sent me a 130-age report on IBC from a special symposium. I'll try to digest it.

Thanks as always, for your support and kind words.


Anonymous said...

wow - great minds think alike. I titled a post today, Thinking pink and seeing red!

This was tough for me to read. You touched on some very important information on IBC and I absolutely agree that there is not enough done for this specific breast cancer.

Why is there such a disparity in research, even within the breast cancer sphere?

Anonymous said...

I think a lot of us are feeling the same as you Jody and thanks for putting it into words so wonderfully as you always do. I have a draft of a similar post pending too, but keep reading so many magnificent posts such as yours, that i think I may just end up doing a round up of everyone's with links to your sites.

Dennis Pyritz, RN said...

Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blogs” with over 1000 other personal cancer blogs at www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources, reviews and more.
If you have not visited before or recently, please stop by. If you agree that the site is a worthwhile resource for those affected by cancer, please consider adding Being Cancer Network to your own blogroll.
Now that you are listed, you can expect to gain a wider audience for your thoughts and experiences. Being Cancer Network is a place to share and communicate.
And like bloggers everywhere, I love receiving your comments and ideas.

Take care, Dennis (beingcancer@att.net)

Nancy's Point said...

This post really gives me food for thought. Other years I have not given much thought to this issue, but after my recent diagnosis, well, I am thinking about a lot of new things. Still figuring out my stand on the pink madness.