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For some with cancer, 'pink October' can't end soon enough

Published:Tuesday | October 16, 2018 | 12:00 AM

When she was first diagnosed with breast cancer in 2012, Denise Valley went all out for October - think organised brunches with drag queen performers and nights on the town with a pink stretch limo.

She participated in every breast cancer walk and 5k. When she saw an item with a pink ribbon logo at the grocery store, she bought it.

But then she learned her cancer metastasised to her lungs in 2013. For the first time, Valley saw October differently. She hasn't gone to an event since.

"I realised there's no victory for me at the end," she said. "I can 'fight like a girl' all I want ... but I'll never stop treatment. There's no bell to ring."

October can be a month of empowerment, reflection and fundraising for those who have been affected by breast cancer. But for some women with stage IV breast cancer - in which the cancer has infiltrated other parts of their body - the 'pink month' can't end soon enough.

 

METASTATIC BREAST CANCER

 

To these women, metastatic breast cancer is often overlooked throughout October, particularly in terms of research funding. Unlike people who have an early stage of the disease, the end of their metastatic breast cancer journey is not neatly wrapped up in a pink ribbon, they say.

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

It's estimated that 40,000 people die every year from metastatic breast cancer.

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

The number of metastatic breast cancer patients increased by 17 per cent from 2000 to 2010, the study said. It will likely increase by 31 per cent from 2010 to 2020.

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

Merry Jones of Dover was first diagnosed with an early stage of the condition in 2006. She was cancer-free for years, but was diagnosed with stage IV in 2015. She hardly knew anything about this stage of cancer - and learned most people do not.

"You don't realise when you're diagnosed that it is for life, however long that life is," she said.

 

LIMITED FUNDING

 

The Metastatic Breast Cancer Alliance, an advocacy organisation, found that only seven per cent of $15 billion invested in breast cancer research funding from 2000 to 2013 went towards work focused on stage IV breast cancer.

Beth Fairchild, president of non-profit METAvivor Research and Support, has stage IV breast cancer. She said that although the disease as a whole gets more money than any other cancer, metastatic cancer is often "written off".

Most of the funding goes to awareness and early detection, she said.

"I've heard someone say, 'Why close the gate 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. Oftentimes, the large breast cancer events consist of women who are in the early stages or who are considered to be survivors.

A handful of women interviewed by The News Journal only knew of a couple of other Delaware women who have metastatic breast cancer.

Barbara Westfall of Greenwood has gone to several breast cancer support group meetings over the years. She's never become a regular member.

The experiences were too different, she said.

Many women with stage IV often have to stop working to navigate the intricacies of clinical trials as they adjust to the idea that their time is likely limited. Those topics aren't usually brought up, she said.

"This is not something you go through and get out of," she said. "To me, it felt very different. They had the idea and outlook of 'OK, I have to get out, and it's a temporary thing and I can finish, and I can go on with the rest of my life.'

"I don't really know what exactly is going to happen," Westfall said, "but I know that is not going to happen."

 

SUPPORT GROUPS

 

The Delaware Breast Cancer Coalition didn't have a support group for women with stage IV until this year. That new group had its first meeting in September, said Lois Wilkinson, the coalition's programme

manager for education and survivorship.

Wilkinson, a stage II breast cancer

survivor, said she didn't fully realise the different experiences until running the

support group. It's evident in the smaller details, she said.

She recently learned most women with metastatic breast cancer don't like being called 'survivors'. Since a woman will likely never conquer the disease, they prefer the term 'thriver', she said.

"I had breast cancer but I don't fully understand," she said. "These ladies do."

Denise Valley of Millsboro fears October festivities spread "false hope" to some women. At first, she thought her cancer was always going to be temporary. She never thought it would come back.

Until she was diagnosed with stage IV, Valley said she didn't know that about 30 per cent of women with early-stage breast cancer will develop metastatic disease.

She no longer participates in breast cancer events, but has found refuge in private Facebook groups for women with stage IV.

Those are the only people who get it, she said.

"We're trying to stay one step ahead," Valley stated.

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