Tuesday, October 7, 2014




Why some women with breast cancer dread October
CHICAGO TRIBUNEblbrotman@tribune.com 


Breast cancer awareness


Twelve thousand women wearing pink T-shirts participate in the "The Young Ladies" race against breast cancer at the Le Mans racetrack in western France. (Jean-Francois Monier, Getty-AFP)
'I feel like I'm the wet dishrag. There's a party, but I'm just a damper on the party.'
'The pain of October is knowing that you don't fit in with the predominant happy theme.'
The pink ribbons, pink T-shirts, pink carnations, a pink bra sculpture — there's pink seemingly everywhere, promoting mammograms, raising funds and celebrating survivors in October's Breast Cancer Awareness Month.
But there are some people who are not uplifted by the annual campaign.
Including some who are breast cancer patients.
Not the ones with triumphant stories of finishing treatment with apparent cures. The ones with metastatic breast cancer — cancer that has spread, and is incurable.
Their stories are rarely told during Breast Cancer Awareness Month, said Katherine O'Brien, 48, of La Grange, a board member of the Metastatic Breast Cancer Network.

They aren't happy stories. People with metastatic breast cancer spend the rest of their lives, however long they last, undergoing repeated rounds of treatments and scans. The disease is always on their minds; the shadow of death is always on the horizon.
And eventually, the shadow falls.
Who wants to hear about that?
"I feel like I'm the wet dishrag," said O'Brien. "There's a party, but I'm just a damper on the party.
"I'm happy, of course, for people who are doing well and have finished treatment, but I don't feel like I'm a part of that."



"It's a very solitary feeling," said Rebecca del Galdo, 46, of Wheaton. "You hear the word 'survivor' and that doesn't apply to someone with metastatic breast cancer. It's hard, at least for me, to not take it personally when people say, 'I beat this. I didn't let cancer get me.'
"I didn't do anything different than anyone else who has had breast cancer. It's just how it happened in my body. It wasn't that I didn't eat right or I didn't exercise enough or I was negative."
She is constantly aware of her illness. "I don't think I go more than five minutes without it at least popping into my head," she said. "And during this month, it really is everywhere."
October is so hard for many metastatic breast cancer patients that a New York survivors' group called SHARE is holding a webinar Monday on "Coping With October" to help them deal with feelings of anger, isolation and depression.
O'Brien recalls another suggestion.
"Somebody in one group I'm in said, 'Does anyone know anyone that owns a private island? It would be great! We'll get a nurse and an oncologist and just stay there until October is over.' "
"The pain of October is knowing that you don't fit in with the predominant happy theme of what is portrayed normally in the media," said Shirley Mertz, 68, president of the Metastatic Breast Cancer Network, who lives in suburban Chicago.
That happy theme has grated on others, including author Barbara Ehrenreich, who has written of her own anger at facing the illness amid "our implacably optimistic breast-cancer culture."
  • @franniescarp The problem with statements such as yours, as mentioned by several in the article, is the implication that those who died of cancer were somehow deficient in their fight. No, they were just the unlucky ones, and the ones who survived happened to have an iteration of the disease...
CHIGIRL72
AT 6:43 AM OCTOBER 07, 2014
Mertz, on the other hand, sees value in the pink movement, praising it for raising awareness and funds and encouraging celebrations for ending treatment for early stage cancer.
But she would like more people to be aware of metastatic breast cancer — although one group in particular, she said, does not want to be.
"We are many times shunned by people who have early stage disease because metastatic disease makes them uncomfortable," she said.
She understands.
"I didn't want my cancer to come back. I didn't want to hear about people dying with breast cancer because I thought, 'Oh my gosh, I could be that person.' So I understand where they're coming from."
For Breast Cancer Awareness Month, and every month, the Metastatic Breast Cancer Network wants to raise awareness about facts like these:


•Between 20 percent and 30 percent of people with early stage breast cancer will develop the metastatic disease.
•-Early detection does not promise a cure. Metastatic breast cancer can occur five, 10 or 15 years after diagnosis and successful treatment of early stage breast cancer.
•Though most people will eventually die of the disease, some people can live with it for many years.
These women encourage people to direct their breast cancer dollars to research that could help treat or someday cure the metastatic disease.
And they don't begrudge anyone a pink-themed celebration for successfully completing treatment for early stage breast cancer.
"I was one of them in 1991," Mertz said.
"I would love to celebrate finishing treatment," O'Brien said. "If I could, I'd be out there dancing. But I would try to have compassion for people who won't finish their treatment."
The project management company where Del Galdo works, which to her gratitude has rallied around the cause of metastatic breast cancer, will have a group of employees marching in Chicago's Columbus Day parade and handing out literature on the disease.
They will be wearing matching Metastatic Breast Cancer Network T-shirts.
They are purple.
National Metastatic Breast Cancer Awareness Day is Oct. 13. On Oct 19, the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and the Metastatic Breast Cancer Network will hold a meetup on metastatic breast cancer. It is free and open to the public. More information is at cancer.northwestern.edu/metastatic.
Copyright © 2014, Chicago Tribune


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