Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness
“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella
No Change in Death Rate From Breast Cancer Since 1970
Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970. Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).
Sea-to-Sea For METAvivor
Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan. Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby. At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer. JJ was delivered immediately but his mama died nine months later. “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.
“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC. He wanted to do this by running across the USA … what did I think?” CJ says. Needless to say, CJ was elated.
So February 1, 2014, Joe will start running. The event is called Sea-to-Sea for MBC. Joe will run from San Diego to New York City 3,845 miles, arriving in the Big Apple on Father’s Day. He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey. On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.
What is METAvivor?
METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.
It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer. Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’ “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says. METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000. We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”
Many believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer. This is, unfortunately, not the case. “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella, Sea-to-Sea Run Volunteer, states. “Prevention and early detection were noble goals but they have not worked. How long will we practice triage in reverse?” CJ asks.
The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “ Their voices are lost in the pink hype,” AnneMarie says.
“This event is happening because the majority of public doesn’t even know what metastasis is. We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ. Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body. It is fatal. “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.
The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling. But that is not the only problem with the numbers. “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.
What’s Not Happening in Research
METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention. “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ. “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”
“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do. Spread awareness. Hear the patients. Hear the researchers along the route. Spread the word,” says CJ.
AnneMarie explains her interest in metastatic research with her mother’s story, “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy. My mom is a 2-time survivor. She surpassed five years on both breast cancers. She’s in the ‘good stats’, but she’s metastatic. ” CJ also shared her experience. “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic. You never know,” she says.
“Metastatic cells can exist prior to one having a detectable tumor. These cells do not respond to primary BC treatment. Hence MBC,” CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years. Everyone is at risk. Not to scare. Just being realistic.” Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”
At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread. One type of chemotherapy and/or radiation therapy is used, when it fails, another is used. With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left. The patient dies. “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.
Lori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t. Studies are in their infancy…” The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized. “It’s good to try to prevent MBC. BUT this does NOT help those who have already metastasized. We want research to extend our lives with quality and ultimately to save lives. This is not helped by prevention of mets research. I’d like ALL chronic disease curable, I’ll settle for chronic. I’d like to see my son marry, grandkids. Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”
If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event. Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!
“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.