30 days of facts, Day 12

From Metavivor: Why We Need You

100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.

Despite these stark realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die.

Metastatic/Stage IV breast cancer is that which has spread to other parts of the body - most notably the bones, liver, lungs, and/or brain. This is the ONLY breast cancer that kills, hence the argument about whether early detection saves lives. 

From above:

• only 6-10% of initial breast cancer diagnoses are metastatic
• 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die
• the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis

You read that right. 2% of fundraising goes toward the only breast cancer that kills. 

How you can help

30 facts in 30 days, Day 11

109 die each day from Metastatic Breast Cancer in the US. (That's like a major plane crash happening twice a week, every week, all year long!)

30 days of facts, Day 10

As we come up on October 13, National Metastatic Breast Cancer Awareness Day, let's talk about that *other* thing that's been promoted for the same day: "No bra day." The poster says "support breast cancer." No, I don't support it. In fact, I'd like to return mine, thanks. And "set the tatas free?" Really? So what about those of us who don't have any? (And those of us who, for whatever reason, cannot go braless without pain? This is blatant sexism: it in no way helps anyone, other than maybe people who just want to ogle braless breasts.

More tomorrow on Metastatic Breast Cancer.

30 days of facts, Day 9

Lymphedema currently has no cure and requires ongoing management in the form of compression garments, bandaging, PT and more. But lymphedema treatment IS NOT mandated. Whether a patient has primary (occurring on its own) or secondary (caused by another disease or condition, such as lymph node removal following breast cancer), insurance can legally deny treatment. The Lymphedema Treatment Act seeks to mandate desperately-needed treatment, so that patients can get their LE under control, keep it from progressing, and find some relief.

The Lymphedema Treatment Act is a federal bill that aims to improve coverage for the treatment of lymphedema from any cause. Untreated and undertreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death.  Thus, prognosis for the patient is far worse and treatment more costly when the disease is not properly managed.

YOU CAN HELP.

30 facts in 30 days, Day 8

I got busy and missed yesterday, so I'll put up days 8 and 9 today.


"Although they experienced classic symptoms of post-surgical lymphedema, many breast patients didn't recognize the condition as related to treatment and said they didn't receive any information about it from their healthcare providers..." The link below is a small-sample study, but it echoes my experience. My doctors told me that since I had only had a sentinel node biopsy (7 nodes removed total between the two sides), my risk was negligible. In fact, they did not even recognize it as lymphedema when I pointed the swelling and redness out to them. My PT diagnosed it: lymphedema in my right axilla, upper arm (now also in my hand), upper chest, breast, torso, and left abdomen.

Breast cancer: lymphedema awareness lacking

30 facts in 30 days, Day 7

About a year ago, a list of the 50 worst charities in America was released, and 5 of them are pink. From paying for professional fundraisers to lining their own pockets, these are some NOT to send your hard-earned cash.

http://vitaminw.co/news/breast-cancer-scams-worst-charities-include-5-pink-types

I think tomorrow when I have more time (I just got a really nice wholesale order from a big fiber company!!), I'll talk more about lymphedema, since that's what I'm personally struggling with at the moment. 

30 facts in 30 days: Day 6

Can you imagine, in the midst of all the pink and sexualized slogans, being a man with breast cancer? While comparatively rare, men can – and do – get breast cancer. Cute slactivist social media games that admonish "keep it secret from the men" only serve to further marginalize men, when they should be included and educated."

"...men make up about 1 percent of all invasive breast cancer cases, according to the American Cancer Society. Each year, that amounts to about 2,400 new cases scattered across the country. About 430 men are expected to die from the disease this year."

"I never... would have thought that a man could get breast cancer."