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