September 25, 2017

The Angelina factor

Who's the fairest of all? Take a look into your mirror!

Who’s the fairest of all? My brave metastatic sisters!

Now that some time has passed, I think I can discuss this in a rational manner. There have been varied reactions to Angelina Jolie’s descision to have a double mastectomy after testing positive for the BRCA gene mutation, a hereditary factor affecting a five percent of breast cancer and 10-15 percent of ovarian cancer cases. The cover of People magazine calls it a brave and heroic act. Others call it self-serving and drastic. I just read an article in the Boston Globe, which criticized her for having the wealth and beauty to afford such an endeavor.

My reaction? Sheer anger and frustration. I bristled at all the attention and admiration bestowed upon Angelina, when in contrast I feel the real heroes are the women facing metastatic (stage IV) cancer who  garner little publicity, and worse, funding. I felt furious that so many wonderful women and men, many of them young and with small children, are dying every day. And they do this quietly as the pink parade goes on celebrating survivorship. I’m not angry at Angelina. I don’t fault her for being rich, beautiful and for making what I consider is a smart decision to drastically lower her chance of acquiring cancer.

It just sparked my outrage that only about 3 percent of all money for breast cancer research is for metastatic breast cancer. You know, the breast cancer that kills. No offense to Angelina; but I know a lot of women who are a lot more heroic than her. It felt like a slap in the face for all of us who face the prospect of premature death every day.

As I said in a lively Facebook discussion about the topic: ” I know so many brave women staring death in the face as they battle metastatic cancer. We don’t hear about them; we need a cure, people. And we also need to look at lifestyle and the environment and its role. I know a lot of women who had double mastectomies only to see it coming back. I get frustrated how people are not outraged and not drawing attention to the sheer volume of people still dying from this disease. We start an unending war over the World Trade Center. More than 7.5 million people in the world die of cancer every year, about 1,500 per day in the US. BRCA 1 and BRCA 2 affect such a small minority of breast cancers; I would hope this opens up a bigger discussion of the sheer magnitude of this disease.”

I just read a post from another blogger that was more diplomatic about the situation. She misses the voice of Elizabeth Edwards, who drew widespread attention to metastatic breast cancer. I don’t wish this disease on anyone; but I guess it takes a few celebrities to get the discussion going. And I would hope that they would do more than draw attention to metastatic disease; but also to enormous need to find a cure. We need to dispel the pretty-in-pink notion that all you need is to detect it early and you can be “cured.” Approximately 30 percent of all early breast cancers come back as metastatic. I consider myself part of that population. I was diagnosed with stage II breast cancer that had not spread to the lymph nodes. My prognosis was excellent, and here I am now. That’s something you don’t often hear about because people are too scared to think about it.

At the same time, I do all I can maintain and share stories of hope. Because I know statistics don’t tell the whole story. According to statistics, I only had about a 20 percent chance to be alive, much less well, at this time – five years after being diagnosed with metastatic breast cancer. Right now, I’m on a drug, Afinitor, which is reducing my tumors, according to my last scan. The drug was released only this past July. We need more developments like this, and hopefully a cure. That’s why I give to organizations dedicated solely to research. Right now I’m donating 100 percent of my proceeds (up to 50 books) to Stand Up to Cancer. I’ve also donated money to Metavivor’s metastatic research fund and the National Breast Cancer Coalition. If you can’t donate money; you can donate your voice. Let people see the face of the real heroes; let them know we need their help and attention. I’d like to see one of you on the cover of a  magazine!

Tami Boehmer is a metastatic breast cancer survivor, speaker, blogger and author of the award-winning book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds. You can visit her at www.MiracleSurvivors.com.

Comments

  1. This post is spot on. It’s pathetic how little money goes to metastatic research. We have to keep speaking up until this changes.

  2. Reblogged this on Susan's Blog – Advocates 4 Breast Cancer and commented:
    Here is a great post from my friend Tami who has MBC (Metastatic Breast Cancer). What I love most about Tami is while she knows the realities of this disease, she continues to inspire as she shares stories about hope on her blog as well as her award-winning book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.

    I was also sorry to hear about Angelina’s Aunt who died from MBC. Because there are 113 deaths a day from MBC in the US alone, you can also read an incredible tribute to Maria Wetzel who also died from MBC the same day as Angelina Jolie’s aunt at: http://breastcanceradvocate.wordpress.com/2013/05/28/a-true-advocate/.

    We must do everything to continue research that will help those with metastasis stay alive, while we work on ending this terrible disease.

  3. Exactly. Everything said here times a million.

  4. “I bristled at all the attention and admiration bestowed upon Angelina, when in contrast I feel the real heroes are the women facing metastatic (stage IV) cancer who garner little publicity, and worse, funding.”

    As the daughter of a Stage 3 metastatic breast cancer survivor, and a carrier of a BRCA 1 gene mutation I felt compelled to respond to this. I agree 100% that we need to fund research that focuses on metastatic breast cancer. I want to ask if there is a way to bring attention to this great need without diminishing the role of women who carry this mutation in the context of a larger movement to change the conversation about breast cancer, genetics, and funding for cancer research.

    BRCA mutation carriers indeed account for roughly 5-10% of women diagnosed with breast/ovarian cancer. I have often faced the sentiment shared in your post that we don’t really matter in the larger context of research funding because we are rare, and because many of us haven’t yet been diagnosed with cancer. Consider that historically there has been an extreme lack of funding for prevention research, just as there is an extreme lack of funding for metastatic breast cancer. If we don’t take any action, BRCA carriers have an 87% chance of developing breast cancer, which is often triple negative, and as you mention 30% metastatic regardless of stage.

    I wouldn’t dream of diminishing the pain, suffering, and heroism of anyone who faces metastatic breast cancer, as I have seen first hand what metastatic breast cancer does to the women in my family. However, I would ask if it is necessary to call one group of women facing this disease the “real heroes” over another when we are all facing our own pain, suffering, and lack of funding for better options?

    Honestly I think we are all heroes….and we all deserve better. And we find better options by working together.

    • Thank you for your honest feedback. Sorry for the late reply. Point well taken. You are right; we are all in the same boat. I wrote this in frustration after seeing so many of my friends die and dying from metastatic cancer and the lack of funding and attention drawn to this terrible form of the disease. I know that the BRCA mutuation leads to more aggressive breast cancer. I was not trying to diminish BRCA survivors; just commenting on how our culture worships celebrities and how we only want to focus on the success stories; not looking at the ugly part of the disease that I experience all the time either personally or when a friend dies.

  5. I couldn’t agree more. Perfectly said.

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