Pinktober Guest Post: Jen

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Jen wrote today’s post. Her story is very special because she is one of the very view metsers that have gone into remission. Jen was diagnosed in 2008 at 41 years old with Stage IV breast cancer (liver and bone mets),  Her2 and ER positive.  She is a single mom with two daughters. Fortunately, Jen had a complete response to chemotherapy and has had no evidence of disease (NED) for over five years.  She’ll be on Herceptin for the rest of her life. Let’s turn it over to Jen now; please give her lots of comment love!

. . .

Oh the funny looks I get when people ask if I am doing the Komen Race for the Cure and I politely say I do not support Komen.   WHAT??  You have breast cancer?  WHY?

Well, I guess I wish they would change their name.   Komen is not for the cure.   The cure is not a hideous pink awareness campaign.  The cure is not about pom poms and awareness.   The cure is completely about research.   Komen gives less than 18 percent toward research and only 3 percent towards metastatic breast cancer research.  For clarification, early stage cancer does not kill.   Metastatic breast cancer  is what kills.

Thirty percent of early stage breast cancer will eventually turn metastatic.   And 97 percent of metastatic breast cancer patients die.   With all this awareness, it is amazing how many women are totally misled.    After 8, 10 or 15 years, the cancer has returned and they are dumbfounded because they were told they were 98 percent cured. That 98 percent was a five year survival rate which is touted constantly.  Seriously, these poor women are in shock that they are now metastatic. How often does the awareness campaign cite these statistics????

What can I tell you about being a metastatic breast cancer patient?   I was diagnosed at the age of 41 with Stage IV right from the start.   I found my own lump and the mammogram could not pick it up even though it could be felt.  Neither did the ultrasound.  When finally diagnosed six months later, I had Stage IV cancer spreading to my lymph nodes, liver and bones.     I am a single mother of two daughters.   I work full time and have had to continue working  full time as I am the sole source of income and insurance.

Since May 2008, I have had treatments every three weeks  and that is over 100 treatments so far.  The thing about metastatic cancer is that I will never be done with treatments as long as I am alive.   They may change as treatment fails but I will always be on treatment.  I am lucky as my treatment, for now, has only a few side effects and I can manage fairly well.   For the first six months, I was not well at all and many others live years struggling like this.    What people do not realize is that by February every year, I max out my out of pocket expenses and immediately have $2500-$3000 uncovered expenses.   Not to mention the co pays with doctor’s appointments and prescriptions.   Also, I have to take off work one afternoon every three weeks.      Finally there is the dark cloud over my head saying, “you have a terminal disease”.    Ninety-seven percent will die from this disease.

So when you look at me and see that I look pretty healthy and normal, you should look a little deeper and see that I am afraid, financially burdened, tired, and angry.   I am angry that pink brain washing, especially in October, has taken center stage and presented a pink happy image that we are really making strides against cancer.   I am angry that so many people make money off our struggles and pawn it off as supporting breast cancer awareness.  I am angry that if Komen was keeping their original mission, the money would be going into research that finds a cure.  I am angry that all this attention and enthusiasm couldn’t be rallied in to research that makes a difference.   I am angry that I know so many wonderful women and many very young women and young mothers who are suffering and dying.   I am angry that no awareness is drawn to the death rate and that this has continued to happen at the same rate as it did back in the 80’s when Komen was started.

October is a very difficult month for those with Metastatic Breast Cancer as we are the ones who feel failed.  Where is our hope?

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The Komen Organization in Numbers and Words

komen total exp

Figure 1. Total expenses of the Komen organization for the year ending 31 March 2012.

I love the Internet! With thanks to my friend GG, a stellar webcomber, I have been spending the last couple of days studying the most recent independent audit of the Susan G. Komen Breast Cancer Foundation, Inc. The audit is available to all as a PDF at that link.

First, the numbers

The Komen financial year runs from the first of April through March thirty-first. The most recent independently audited annual financial statement dates from March 31, 2012, and this post is based on those numbers.(*)

komen totals

Figure 2. Gross breakdown of Total Expenses from Figure 1.

The good news first. Komen spends a relatively small portion of income on support services–about 19% of total expenses(the blue slice of the pie at the left). These support services expenses consist of fund-raising costs ($52,118,804 or 69%) and general/administrative costs ($23,064,504 or 31%).

The largest portion of Komen income, about 81%, is very appropriately spent on program expenses (the green slice). I am particularly interested in taking a closer look at how that $318,281,722 is spent.

Komen program

Figure 3. Breakdown of program expenses.

There are four categories of program expenses: Research (21% of total program expenses), Public Health Education (44%), Screening (16%) and Treatment Services (8%). The pie chart at the right shows the breakdown.

The lion’s share, of course, is spent on “public health education”. I assume this means awareness campaigns. About a fifth of program expenses are invested in research, approximately the same amount in health screen and treatment services.

Now the words

The  Komen organization was founded in 1982. At that time it made enormous sense to make massive investment in public education and awareness, to dispel the fear that surrounded the word “cancer”. Young people today would have trouble understanding how terrifying the illness was; the word was rarely even pronounced aloud. People were too frightened to examine themselves and sometimes even to go to a doctor if they suspected something. After all, the reasoning went. It’s a death sentence whether I get treated or not.

So much has changed in the more than thirty years since that time. Cancer is now seen as a serious and treatable illness, rather than a death knell, and even metastatic cancer is approached as a chronic disease. Most women in the West have been taught about breast self-examination and breast exams are a regular part of the preventative medicine protocols of hospitals, clinics and insurers.

Moreover, today’s medical thinking and standard of practice is rethinking its approach to mammography, moving toward starting later and repeating less frequently in most cases. The American Cancer Society’s recommendations now call for:

  • Yearly mammograms are recommended starting at age 40 and continuing for as long as a woman is in good health
  • Clinical breast exam (CBE) about every 3 years for women in their 20s and 30s and every year for women 40 and over
  • Women should know how their breasts normally look and feel and report any breast change promptly to their health care provider. Breast self-exam (BSE) is an option for women starting in their 20s.

Is the Komen mission still relevant in 2013?

I’d prefer to answer a slightly different question. Do we still need a large, well-known breast cancer charity in 2013?

Yes, of course. But as the world has changed since 1982, I suggest that the Komen organization’s mission should change. In a country where fewer and fewer people have access and the means to pay for medical care, I suggest that Komen is well placed to increase the proportion of income spent on treatment services. Perhaps individual treatment grants or matching funds or helping to pay for the operation of breast clinics could be considered.

I suggest that more of the organization’s income should be invested in research, both clinical research and basic research. The more we know about cancer, the better equipped we will be to treat it, perhaps even prevent it. I don’t have a personal stake in this; today’s research is not going to benefit me. But think of the generations it could help!

My proposal, then, would be more of a three-piece pie: a third of program expenses to public health education, a third to research and a third to treatment services. What do you think?

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(*)The pie charts were made with the free Create-A-Graph tool available in the Kids’ Zone of the American National Center for Education Statistics.

Discrepancies in totals are due to rounding off or to my own arithmetic incompetence. The original figures are can be seen at the link to the independent audit in the first paragraph of this post. I welcome comment and correction.