Зеленый Гном (leprechaun) wrote in breastcancer,
Зеленый Гном

Regarding "Pink October"

I have a problem with all these glamourly-pink awareness events. They never tell you the truth... As a husband whose wife (a mother of two young kids) is battling a Stage IV BC this is disturbing me deeply. So I'm taking part in this "Virtual Stage IV Awareness" event. We'd like people to know that BC is not a thing of the past and we still need a cure. Badly. VERY badly.

If you'd like to help, please distribute the following text to your local media. Thank you!

Dear Editor,

Millions of people around the world are participating in various breast cancer awareness activities this month. Many of these events involve walking, running or biking for "The Cure." This year, I am participating in a new campaign dedicated exclusively to raising awareness about metastatic breast cancer. It's called the "The Virtual Rally in Support of Progression-Free Survival."

We are asking the 150,000 women living with metastatic breast cancer to write a letter to their local news outlets.

There is no cure for metastatic breast cancer aka advanced breast cancer or Stage IV. We rarely hear about the 150,000 U.S. women dealing with it. In October, it seems the spotlight is almost exclusively on women who "beat" cancer-not the "metser" who is losing her hair for the third time, or the one struggling with chronic constipation or the one who knows she won't see her daughter graduate from grade school.

We don't want your money or your pity and we're not selling pink t-shirts. We just want you to know that we are here and that for us, treatment never ends. Other women HAD breast cancer. We HAVE it and we always will. We hope someday there WILL be a cure so that our daughters are spared our fate.

We want people to know that:
>Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver and lungs.
>Treatment is lifelong and focuses on control and quality of life vs. curative intent.
>About 6% to 10% of women are Stage IV from their initial diagnosis.
>Early detection is not a cure. Metastatic breast cancer can occur ANY time after a woman's original diagnosis, EVEN if she was initially Stage I, II or III.
>Only women with Stage 0 (noninvasive breast cancer) aren't considered to be at risk for metastatic breast cancer.
>Between 20% to 30% of women initially diagnosed with regional stage disease WILL develop metastatic breast cancer.
>Young women DO get metastatic breast cancer.
> There are many different kinds of metastatic breast cancer.
>Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.
>Any breast lump, thickness or skin abnormality should be checked out. With inflammatory breast cancer, there's no lump-the breast can be red and/or itchy and the skin may have an orange-peel like appearance.
>Don't use the recent mammogram controversy to postpone your first mammogram or delay your regularly scheduled exam, especially if you have a family history.
>Mammograms can't detect all cancers. Trust your instinct. If something feels "off" insist on further diagnostic testing.
>Metastatic breast cancer isn't an automatic death sentence-although most women will ultimately die of their disease, some can live long and productive lives.
>There are no hard and fast prognostic statistics for metastatic breast cancer. Every woman's situation is unique.

One last thing. Knowing what to say to someone with metastatic breast cancer can be difficult.
It's fine to say: "I'm so sorry that you have to face this disease. I will be thinking/praying for you. Please let me know if I can help."
Try to avoid back-handed compliments such as: "You are so strong, if this had to happen, you were the right person to get it because you are brave and strong," or "If I had breast cancer, I would be falling apart or scared to death. You seem just fine with it."
Those statements are akin to "You don't sweat much for a fat person," and we hate them.

There are many excellent online metastatic breast cancer resources. Examples include www.breastcancer.org; www.mbcnetwork.org; and www.metavivor.org.

Sincerely yours,...

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