Fighting for a cure, even if only for others
Less research funding goes to metastatic cancer than earlier stages of the disease; patients are working to change that.
For Amanda Rohaly, one of the hardest parts of living with stage four breast cancer is explaining to other people what it’s like to be 42, outwardly healthy and dying.
“People sometimes tell me things like I’m a ‘warrior’ and I’ll ‘beat it again,'” she told Al Jazeera. “I don’t usually correct them, but the reality is that I had never beaten it to begin with, and statistics show that I will most likely not beat it now.”
Rohaly, who lives in Fairmont, West Virginia in the United States, was diagnosed at age 34 with stage two breast cancer, which later metastasised. “Because so little discussion happens around metastatic or stage four breast cancer, most people don’t understand the implications, especially for a younger person who appears to be fine,” she said of her diagnosis.
Each year, more than 250,000 women and men in the US are diagnosed with breast cancer, according to the American Cancer Society, and the disease is the second most common cancer diagnosis for women.
At first, Rohaly found hope in the fact that her cancer had been caught at a relatively early stage and that treatments seemed to be working. But after she was hospitalised in 2016, she discovered her cancer had metastasised, spreading to her bones, spine, hips, pelvis, liver and one of her lungs. The disease would later spread to her brain.
Metastasis occurs when cancer cells break away from the primary tumour and travel via the blood or lymph systems to other parts of the body, where they can form new tumours, according to the National Cancer Institute (NCI). Most types of metastatic cancer cannot be cured.
“My oncologist had told me while I was in the hospital that my cancer was ‘treatable but not curable.’ Only after I left the hospital did I begin to realise what that truly meant. I had a terminal illness, and that meant I was going to die,” said Rohaly.
“Each morning when I woke up, I would begin to cry. I realise now that in those months, I experienced the phases of grief – grieving for the loss of my own life.”
An urgent need for research
Six to 10 percent of breast cancer cases are diagnosed as metastatic, or stage four; another 30 percent of cases, like Rohaly’s, will become metastatic after being diagnosed at an earlier stage, according to the nonprofit group METAVivor, which is dedicated to raising money for metastatic breast cancer research.
While screening and treatment for earlier-stage breast cancer have improved over the years, there are still few treatments available to halt or slow metastasis. Each year in the US, more than 40,000 women and more than 400 men die from breast cancer, according to the American Cancer Society. Metastatic breast cancer causes the majority of those deaths.
I think metastasis remains one of the largest challenges that we face in cancer research - it therapeutically remains the biggest challenge in the field going forward.
There is also a major difference in funding. While the National Institutes of Health had $545.1m in support for breast cancer research in 2017, only about two to five percent of research funding is dedicated to studying metastatic breast cancer, according to METAVivor.
“I think there has been a lot of focus, rightfully so, on early detection and prevention,” Dr. Rosandra Kaplan of the National Cancer Institute’s Center for Cancer Research told Al Jazeera. “[But] I think metastasis remains one of the largest challenges that we face in cancer research – it therapeutically remains the biggest challenge in the field going forward.”
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| In part one of AJ Impact’s series on rare diseases, meet the mom and dad who are struggling to raise millions of dollars to treat their son’s illness. |
Kaplan runs the tumour microenvironment and metastasis section at the institute’s paediatric oncology branch. Her research focuses on understanding how microenvironments in the body change in response to a growing tumour, allowing the cancerous cells to continue to grow and spread.
“[The immune system] really does regulate and prevent cancer when it can, but the tumour can outsmart that process and use pathways that we know that help wound healing or help quiet down the immune response after an infection,” she explained. “We’re trying to understand that interaction so that we can help the immune system recognise your cancer again as a target, as something that it can control and limit, and also to understand the way that the tumour changes over time and how it uses these pathways.”
But the complex biology of metastasis has limited funding to research it, Kaplan said, noting that it isn’t as straightforward as translating general cancer biology to the metastatic field.
‘Our bodies are killing us’
For patients who are diagnosed with stage four cancer, the knowledge and funding gaps are frustrating – and deadly.
Beth Fairchild was diagnosed with metastatic breast cancer at the age of 34 without ever having gone through earlier stages of the disease or having a tumour in her breast. A tattoo artist and mother of two, she now serves on the board of METAVivor and stresses the urgent need for more metastatic research dollars.
“Breast cancer has raised billions of dollars over the years, but there was not a large focus on metastatic cancer because there were no answers to be had,” Fairchild told Al Jazeera. “I had a doctor tell me, ‘Why close the gate when the horse is already out of the barn?'”
What that doctor meant, she says, is that there is no point in treating a patient who is already in the last stage of the disease.
That is changing, however, because the number of metastatic breast cancer patients in the US is growing, and because their median and five-year survival rates are improving, according to a 2017 NCI study that prompted its lead author to conclude there are “increased needs for services and research”.
While patients who were diagnosed with metastatic cancer are in the minority, it’s crucial to understand metastasis to help treat stage four patients and prevent earlier-stage patients from progressing into metastasis, Kaplan said, “because most patients that die of cancer, unfortunately, do die of metastatic disease.”
Fairchild was initially told she would likely survive for two years. She’s now in her fifth year of living with metastatic breast cancer – and is fully aware she’s raising money for research that will never benefit her.
“From the conception of ‘I wonder if this will work?’ to a drug coming to market 15 years and billions of dollars [later] – we don’t have that time,” Fairchild said. “As a patient watching the sands of the hourglass … I balance between anger and despair.”
‘An impossibly strange way to live’
But even though their disease will likely kill them, many metastatic patients have refused to give up. They stage “die-ins”, lobby Congress for more funding, and use social media to get the word out. That kind of visibility and persistence gets results, Fairchild said, pointing to the work of HIV/AIDS activists in the 1980s and 1990s.
“These people were just scared and tired of being ignored, so they protested and they made waves and they moved the needle. Now you’re looking at a disease that is quite manageable if you have HIV, with maybe a normal life span. I think that’s what we as metastatic breast cancer patients hope to accomplish,” she said.
Since her metastatic breast cancer diagnosis, Rohaly has carved out what a normal life looks like for her. After a 15-year career in IT, she used her paid time off – and time off donated by her coworkers – to take a year away from work. Then, she made the difficult decision to leave her job entirely. She’s also come to terms with the fact that she will never have children, devoting herself to her two young nephews instead, one of whom was diagnosed with neuroblastoma (a rare form of cancer that often affects the adrenal glands) a month before her own metastatic diagnosis. They support each other through their treatments.
When she undergoes brain scans every three to four months and full-body scans every six months, doubts about her future arise. But she tries to fill her days with road trips to see friends and time with her family, saving her worrying for when it’s warranted.
“It’s an impossibly strange way to live,” Rohaly said. “I do not walk around each day wondering how much time I have. That would cripple me and prevent me from truly living.”
This is the second story in AJ Impact’s three-part series on the human faces behind rare diagnoses and the challenges researchers and patients face in funding research and accessing treatment. Click on the link to read part one about how a mother and father are struggling to raise millions of dollars to treat their son’s ultrarare disease.