The ‘M’ word

breast cancer survivor

The triumphal image of breast cancer survivorship - not metastatic cancer

Breast cancer culture has become symbolised by images of women wearing pink who are celebrating their survivorship. Well, I don’t mind anyone celebrating something, I don’t even mind wearing pink. But this image, that is so strong, gives the impression that breast cancer is curable, that there is an end to it, that you can joyfully be who you were before. And some women can. Some women can’t. Lives are so changed by cancer, by treatments, by surgery, by multiple surgeries, by depression, by loss, by fertility issues… and on and on the list goes. And because of the fickle nature of breast cancer there is always the possibility of recurrence. Always.

This coming Thursday, the 13th of October, it’s Metastatic Breast Cancer Awareness day. Metastatic breast cancer is cancer that has spread from the original site of the breast. It is currently incurable. It is also referred to as Stage IV breast cancer. There is no Stage V.

Extract from Being Sarah:

No, there are other women who have been dealt a much worse hand. They are living with secondary breast cancer. That dread word, secondaries. The ‘mets’ – metastasis – the spread of this disease. The metastasizing into other tumours, other cancer in other parts of the body. Bones, often; brain, liver and lungs as well. And skin too. It is all so shit.

There is a woman who posts on the forum who has a regional recurrence in her chest, several years after her mastectomy and chemotherapy. Skin mets, but growing into large tumours all over her chest wall, externally weeping and smelly, and internally pressing on various nerves, causing pain and immobility. Her arm is swollen with lymphoedema, another side effect of removing lymph nodes from the armpit, fluid is retained, so the arm and shoulder become swollen and painful. She knows she is dying.

She is very direct. I like her straightforward style of expression. She says she didn’t know how difficult or uncomfortable she would be. And no we don’t talk about that. No, because it’s not pleasant. Pleasant? Is that a word to use about death?

The woman I wrote about here, JaneRA, died in December 2009. She left a powerful post after her death which I posted on my blog earlier this year: Loud opinionated Jane.

This day, the Metastatic Breast Cancer Awareness day, was officially recognised in 2009 by the US Senate and House. It’s aim is to draw attention to the metastatic community. Last year an article in the Huffington Post described it like this:

The day is not about general cancer awareness; it’s about acknowledging the distinct needs of people who have the advanced, incurable form of breast cancer.

In the same article Ellen Moskowitz, president of the Metastatic Breast Cancer Network, says:

“We are definitely out of the pink spotlight. All the stories are about survivors, ‘rah, rah,’ who everyone applauds. It used to be the C-word. Nobody said they had cancer. Now it’s the M-word nobody mentions. The word is metastatic.”

I’ve heard women with metastatic breast cancer tell me that they’ve been shunned at support groups. They’re the future no-one wants to have. They’re the worst case scenario, the nightmare walking in the door. Too much pressure to hear ‘survivor’ and number of years beyond diagnosis, to give ‘hope’ to the newly diagnosed. Rachel at The Cancer Culture Chronicles writes about this so eloquently:
Living with metastatic breast cancer is a strange and lonely place to be.  Because now there are no real milestones, except the one that no one wants to talk about.

The US based independent group MBCN (Metastatic Breast Cancer Network) has a list of 13 facts everyone should know about metastatic disease. This is one of those facts:

There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

Just to clarify here. ‘Survival rate’ means staying alive, or alternatively, dying. Dying of breast cancer. About 90% of breast cancer deaths are caused by metastatic breast cancer. That’s why we need to be aware of it. That’s why we need more research and understanding and treatments.

I’d like to ask you to share this link to the list of facts about MBC. The MBCN also has a list of suggestions of other things you can do to to increase awareness.

You’ll certainly be hearing more about the ‘M’ word on my blog.

11 thoughts on “The ‘M’ word

  1. Powerful post, Sarah! I agree that so little attention goes to metastatic disease. I actually started the month discussing my story of my dear friend whom I lost to metastatic breast cancer. I figured I didn’t want to wait for a particular day to share the harrowing story of a deep loss due to mets. The link is here:

    I love your post-a-day committment. Your postings are great!!

  2. *Big sigh* Thanks for this post Sarah. You’re right, in that it’s very difficult to buy into this concept of survivorship when you spend most of your time at Doctors appointments, receiving treatment for the rest of your life, dealing with side effects of the mets, treatment side effect, and whatever else this wretched disease throws at us. It’s not my idea of quality of life, and there are times many of us feel as though we’re barely surviving.

  3. I stopped reading the post after you said, “There is no Stage V.” That says it all. We must not neglect those in Stage IV cancer, those of us fortunate enough to have early-stage cancer. I’ve never walked in the shoes of Stage IV cancer, but can only imagine. Thanks for this stirring post. Tears well up as I ruminate on your words.

  4. This is such an important post, Sarah. The failure to include the mets community in all the pink hoopla is just so unacceptable and the lack of funding for mets research is deplorable and must change. In response to Rachel’s statement about mets being a strange and lonely place, I want to say it may be lonely, but you are not alone. We are here for you and all the others. Thanks for writing this.

    • Yes Nancy, the more I am immersed in breast cancer culture I am constantly surprised at the loneliness of the mets community that is described by people like Rachel. You are right. Things must change.

  5. Great post, Sarah. *Heavy sigh. I’m so sick of the hollow ring of the word “Awareness”…maybe we can have Metastatic Breast Cancer Acknowledgment Day?? Acknowledgment goes beyond awareness. Acknowledgment looks METS in the eye, instead of averting its eyes, like Awareness, muttering, “oh yeah, I know…”

  6. Pingback: Mid-Week Balance: 12 Ocbober 2011

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