Some patients with stage IV breast cancer may not be related to "pink october"

She participated in all the breast cancer walks and the 5 km race. When she saw an article bearing the logo of a pink ribbon at the grocery store, she bought it.

But then, she learned that her cancer was metastasized to the lungs in 2013. For the first time, Valley saw October differently. She has not been to an event since.

"I realized that there was no victory for me at the end," she said. "I can" fight like a girl "whatever I want, … but I'll never stop the treatment, no ringing sounds."

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October can be a month of empowerment, reflection and fundraising for those affected by breast cancer. But for some women with stage IV breast cancer – where the cancer has infiltrated into other parts of their body – the "pink month" can not end soon enough.

For these women, metastatic breast cancer is often overlooked throughout the month of October, especially in terms of research money. Unlike people who have an early stage of the disease, the end of their course of metastatic breast cancer is not perfectly packaged in a pink ribbon, they say.

Women with stage IV breast cancer will receive treatment for the rest of their lives. And finally, the disease will kill them.

It is estimated that 40,000 people die each year from metastatic breast cancer.

In 2017, the National Cancer Institute released a study that reveals that more women than ever are living with metastatic breast cancer. This is largely attributed to early detection and medical treatments that allow people to live longer with the disease.

According to the study, the number of patients with metastatic breast cancer has increased by 17% between 2000 and 2010. It is expected to increase by 31% between 2010 and 2020.

More services and research are needed for this growing population, the study said.

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Merry Jones, of Dover, Del., Was diagnosed for the first time with an early stage of the disease in 2006. She was cancer free for years, but was diagnosed with stage IV in 2015.

She knew almost nothing about this phase of cancer – and learned that most people did not know it.

Denise Valley of Millsboro, Delaware, is living with stage IV breast cancer. When she was diagnosed for the first time in stage II, she participated in fundraisers and walks, but her stage IV diagnosis made her see October in a different light. (Photo: Jason Minto, The (Wilmington, Del.) News Journal)

"You do not realize that when you are diagnosed, it's for life, no matter how long you live," she said.

The Metastatic Breast Cancer Alliance, an advocacy organization, found that only 7% of the $ 15 billion invested in breast cancer research from 2000 to 2013 was devoted to work focused on stadium breast cancer IV.

Beth Fairchild, president of METAvivor Research and Support, a non-profit association, is suffering from stage IV breast cancer. Although the disease as a whole gets more money than any other cancer, she says that metastatic cancer is often amortized.

Most of this money is used for awareness and early detection, she said.

"I heard someone say," Why shut the door when the horse is out of the barn? ", She said." They think we are a lost cause. "

Some women with stage IV breast cancer say they feel isolated. Large breast cancers often involve women at an early stage or considered as survivors.

A handful of women surveyed knew only two people with metastatic breast cancer.

Barbara Westfall of Greenwood, Delaware, has attended several breast cancer support group meetings over the years. She has never become a regular member.

Women's experiences were too different, she said.

Many women in stage IV of the disease have to stop working to navigate the meanders of clinical trials because they are adapting to the idea that their time is probably limited. These topics are not usually discussed at support group meetings, she said.

"It's not something you're going through and out of," she says. "For me, it was very different.They had the idea and the prospect of 'OK, I have to go out and it's temporary, I can finish and continue the rest of my life . & # 39; "

"I do not really know what's going to happen," Westfall said. "But I know that it will not happen."

The Delaware Breast Cancer Coalition has not set up a support group for women in Phase IV until this year. This new group held its first meeting in September, said Lois Wilkinson, program officer for the Coalition for Education and Survival.

Wilkinson, a stage II breast cancer survivor, said she had not fully understood the different experiences before leading the support group. This is evident in the smallest details.

Most women with metastatic breast cancer do not like to be called survivors, she learned recently. Since a woman will probably never be defeated by the disease, they prefer the term "prosperous," she said.

"I had breast cancer, but I do not quite understand," she said. "These ladies do."

The five-year survival rate for breast cancer patients is 88.6%, but breast cancer is the second leading cause of death in women, overwhelmed only by lung cancer, according to the Federal Center for Control and disease prevention.

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Valley, which has withdrawn from the pink ribbon activities, thinks the festivities have sown false hope in some women. At first, she thought her cancer was going to be temporary.

She never thought it would come back.

Until she was diagnosed with stage IV, Valley said she was unaware that about 30% of women with early stage breast cancer would develop a metastatic disease.

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Although she no longer participates in events related to breast cancer, she has found refuge in private groups on Facebook aimed at women with stage IV.

These are the only people to have it, she says.

"We are trying to keep one step ahead," she said. "I have this bus every day and it goes faster and faster."

Follow Meredith Newman on Twitter: @MereNewman

Missy Anderson, left; Marie Carey of Dover; Barbara Westfall of Greenwood; and Camden's Geri Cox McClimens, all located in Delaware, are part of the Delaware Breast Cancer Coalition's first support group for women with stage IV disease. (Photo courtesy of Lois Wilkinson)

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