/, Patient Resources/Pinktober – My Journey With IBC
2018-10-31T03:09:14+00:00By |

*This article was written by Ashleigh Royalty Range on Tuesday, November 4, 2014. The original post can be found here: Pinktober

For the first time in my life, I’ve paid direct attention to October’s Breast Cancer Awareness Month. It has taken on a whole new meaning for me now that I actually have breast cancer. You would think this month would be extremely encouraging to women with breast cancer, and I think for many women it is a month that they feel very special and supported. I know my friends and family have made me feel very loved this month. However, since becoming a part of a network of woman dying of the disease – ones that are undergoing the most aggressive treatments possible – women that will suffer for their entire lifetimes until they pass – my eyes have been opened to the dark side of that pretty pink ribbon.

The Awesome

Noah’s School

Let’s start with the good stuff of this month. Noah’s school had a breast cancer awareness day which I thought was nice. It turns out they don’t make pink shirts for boys in toddler size, but I hated to send the one kid in the school whose mom actually has cancer without a support shirt! So Brad had the idea of making a shirt. I picked up a $3 shirt from wal-mart and some neon pink puff paint. I looked at the materials thinking “this is not going to end well…there is no way this is going to turn out okay.” We debated about writing some catchy phrases on the shirt (“Give to research: help my mom live to see me in Kindergarten”, or “Help me find a cure”), but they all sounded just a teensy bit…depressing, at least for the toddler class.  So at midnight the night before we settled on this: Daily Gifts Another fun story from the month has to do with my friend Jamie (mentioned before here) who had Stage 3 breast cancer seven years ago at the young age of 25. She has been extremely supportive through this journey and I’m so thankful for God putting her in my life literally hours before and after my diagnosis. God is so cool.

Every day in October either her or one of her “helpers” drove to my house and dropped off a pink gift wrapped with an uplifting verse. The gifts ranged from pink gum to a sign she had painted to candy to pink ear plugs. It has been a blast looking out my front door each day and finding a treat! I can’t believe she has been able to find that many things that are pink! Thank you Jamie for the loving encouragement you are to me daily!

Breast Cancer Funding

Breast cancer is one of the most funded diseases in the US- sweet! Some of you may have seen this infographic floating around:

I remember seeing it earlier this year, before being diagnosed, and thinking it was dumb Americans give so much money to breast cancer when it has a really high survival rate. (You’ll see below how that sentiment has changed.)

Many wonderful organizations and leaders have done a terrific job bringing breast cancer out of taboo status into common knowledge and raised a boatload of money over the years. Before being diagnosed, I had definitely heard of breast cancer, the Susan G. Komen organization, mastectomy, about how mammograms were important for detecting breast cancer, and things you could do to increase or lower your risk of getting it (aside: I don’t do any of the things that increase your risk and I do all of the things that lower your risk). If I was born a generation ago, I would not have nearly this level of knowledge, and that is due to the tireless work of many women and men to increase breast cancer awareness- for them I am so very grateful!

The Not-so-awesome

Unfortunately, my newly found awareness of this month has not been all positive. There are many women out there that HATE when this month rolls around and want to throw up from even seeing a pink ribbon. I’ve just established that I personally have felt very loved and encouraged this month, and I appreciate the work organizations like Komen have done to raise awareness and public discourse around the disease.  Still, you can understand some of the reasons why Pink is an ironically depressing color for many women with the disease:

 

I’ve seen a ton of articles come across my facebook feed this month from all my newly formed IBC contacts. These articles have articulated much better than a math-nerd/writing-illiterate like me ever could but I’m going to take a shot at summarizing the high (or rather low) points for you:

  • Awareness vs. Research – How many people do you know that have never heard of breast cancer? A large percentage of breast cancer donations go to “awareness” and not to research. The numbers I’ve heard are somewhere in the range of 11-20% of funds raised go to research. In spite of Susan G. Komen’s tagline – “For the Cure” – only ~16% goes to research that would lead to finding a cure. Bummer, right?
  • Research on Rare – So you take the fraction of money going to breast cancer research and then look at how much is being spent on “rare” cancers like mine – triple negative and inflammatory – and that fraction goes down to pennies on the dollar.
    1. I’ve been so incredibly disappointed to learn that after getting the “most funded disease in America” that treatments and survival rates for my type of BC have not statistically changed in the last 30 years due to lack of research dollars. In fact, I’ve learned that IBC does not have an ICD-9 code, the official system of assigning codes to diagnoses and procedures associated with hospital utilization in the United States. You know what that means? That we can’t even track how many women actually have IBC. Try to get funding when you can’t talk about any hard numbers, only rough estimates.
    2. I was talking with my post-doc friend at MDA and she said her colleagues this year had excellent research projects for triple negative cancer, and every one of them got denied funding due to it being “too rare”. If you look at this slide she sent me (below), it actually is the 5th largest type of cancer killing women in the US. So even if it is rare from a standpoint of people getting it, it isn’t so rare from a people-dying-from-it perspective. Same with IBC: it makes up 2-5% of breast cancer cases but makes up 10% of the deaths (a disproportionately higher amount).
  • Profiting off the Pink – The documentary Pink Ribbon, Inc. describes how corporations are leveraging the emotional connection made with the consumer to increase sales via the lovely pink ribbon. You can imagine someone dying of metastatic breast cancer not loving the idea of someone profiting off their disease, right?
  • Think Before You Pink tells readers to follow the pink ribbon to the funding. Make sure the product or company clearly says where the money is going (or that money is actually going somewhere), how much of the cost is going to the non-profit, and make sure there isn’t a cap on the donation amount. If there is a cap then that probably means your one more purchase won’t actually increase how much they give.
  • Metastatic – When was the last time you saw someone in an interview, promotion, marketing campaign that had Stage 4 breast cancer? Someone for which “surviving” and “finding a cure” are now out of the question. Often times the awareness campaigns celebrate the survivors and abandon the women actually dying of breast cancer. Dying of breast cancer is not pretty. Treatments and side effects are not pretty. The frankenboobs I will soon have will not be lovely and feminine. I’ve taken marketing classes, so I get why they decide to use happy, peppy survivors and not depressed, dying women; but it still doesn’t seem like the ideal way of treating those struggling to stay alive another month, week, or day for their families. 🙁

A recent example here is the Joan Lunden article this month on the cover of People Magazine.  On the adorable side, Noah looks at this magazine and says “Mama!”.  However, the tagline of the article – “I will survive this” – is frustrating for me.  Of COURSE you’re going to survive this – you have one of the kinds with a 90% survival rate! It would be a lot more ‘courageous’ for PEOPLE to make a metastatic woman (like this one or this one or this one) their cover instead of the photogenic Lunden.

Miscellaneous Grievances

There are a handful of other crimes that I find more minor but have been pointed out to me over the last month, they include:

  • So called “pink products” that actually include chemical carcinogens that have been proven to cause breast cancer. A lot of these are lotions, makeups, perfumes but my favorite has to be the pink drill bits used for mining:
  • I had always thought of the “save the ta-tas” shirts as being kind of cute and a way to be relevant to the younger culture. But if you think about it for a second, I’m about to lose my “ta-tas” to hopefully save my life. Something seems backwards about saying save the ta-tas.
  • Sexualizing breast cancer has been a fun one to read about. Check out Nascar’s shirt this year to “check your headlights” or the Hooter’s campaign or the “Save Second Base” shirts. Part of me likes the good natured humor and knows that these people probably started with their hearts in the right place, wanting to raise money for BC; however, you can see how for someone feeling not the least bit sexy sans hair and boobs, this does not go over well.

Whew! I think that pretty much covers it. I definitely don’t like to be all complainy-complainy but I figured one not-so-short educational post wouldn’t hurt. What should you do instead?
A few people have asked where they should donate funds if they want to help out. I personally am a fan of the IBC Network. 100% of their money goes to IBC research. I’ve met the founder and driving force behind the organization, Terry Arnold, a fellow triple negative IBCer. She has been able to raise over $330K in the first three years of the organization’s existence. She works tireless hours as a volunteer so every penny can actually go to “finding a cure”.I choose to still see the positive-support-side of the pink ribbon. I know my friends and family that buy pink products are doing it because they love me, support me, and want to see me get well. I never want to get to the point where the ribbon makes me want to “throw up” or I “can’t wait for October to be over,” but I do want to be more informed and make sure those around me realize the pink ribbon is not as straightforward as it seems.

 

***Note, we shared this article here because Ashleigh was very proud of it, and the research she put into this article.  We lost her to IBC July 19th, 2015 but her words can live on, here and in her blog.  ***