KNOXVILLE, Tenn. — Deborah Scaperoth and Chris Betts are two women at different points in their lives, but they share a terminal commonality. They both have stage four metastatic breast cancer and know without a cure, the disease will kill them.
According to komen.org, more than 160,000 people in the U.S. are living with stage four metastatic breast cancer. One in three breast cancer patients will develop the incurable disease through no fault of their own.
A diagnosis means treatment for the rest of your life.
"People want to know, 'Oh, when do you finish treatment?' When I die. That's when treatment finishes," Betts admitted.
They are considered metastatic "thrivers" because they live each day facing a battle they won't win without a cure.
"I'm a person who doesn't give up, so when people talk about how they won over cancer -- and I'm very happy for them -- but we all do what we were told to do and I've had like 105 radiations and 66 chemos," Scaperoth said.
They are exhausted physically and emotionally from treatments, pain and everyday life. The hard part is, they don't know how long the treatments will keep their cancer "sleeping."
"You know, I know the statistics," Betts nodded. "The statistics do not look good. Five years would be fantastic. I see people making it 15 and 20 years, but it all depends on finding a treatment that will give me some longevity."
Both were diagnosed with lower-phase breast cancers in the last few years. After treatment they were told they were cured, but that wasn't the case.
"Breast cancer is really never cured," Nina Reineri, the president of Breast Connect, explained. "You might have what we call NED, No Evidence of Disease, or No Evidence of Active Disease, but it doesn't mean the cancer won't return one day."
In fact, 30 percent of those with breast cancer will wind up with a metastatic diagnosis at some point in their life.
"What they are going through is very different than anybody else and, they're looking for treatment the rest of their lives, they're exhausted, and nothing they did had anything to do with why they have metastatic disease," Reineri explained.
While the disease is extremely isolating, survivors and thrivers are able to lean on each other in groups like Breast Connect. Words matter when it comes to talking with someone living with a terminal diagnosis, even though most people don't like facing the reality of death.
"Don't say keep fighting, you're gonna beat this," Betts urged. "Until there's a cure there's no way. I can't beat this. Don't tell me I'm gonna beat this because those words are just frustrating and infuriating."
That's why they are fighting for a cure, but that can't happen without funding. For Betts, a cure means more time with her husband and kids.
For Deborah, it's the same, with grandkids added in. Both are the faces of an unfair life sentence.
Both of those women found community in the breast cancer advocacy group "Breast Connect." If you are a breast cancer fighter or survivor, you can join the group through breastconnect.org and on Facebook.
RELATED: Three strangers diagnosed with breast cancer a month apart become friends through Facebook group
If you would like to donate directly to metastatic breast cancer research, you can go to Metavivor.org.
DEBORAH SCAPEROTH'S STORY
Deborah Scaperoth is a wife, mother and grandmother. She said she has always been "Miss Healthy" all her life. She would wake up for 6 a.m. boot camps, was always slim and very health conscious.
In 2017, she got home from being away for a trip and felt something hard underneath her left breast. Worried, she asked her husband, Dan, who is an oncologist, what he thought she should do. He urged her to get the spot checked out.
"No, doctors are not immune from this, their wives are not immune from this," Scaperoth nodded. “It’s just something I never, ever imagined because, again, I was always so healthy.”
She went for a mammogram and scan. That's where the doctor told her the spot "bought her a biopsy."
When the results and pathology came back, she found out she was triple negative, with stage three, grade three cancer.
“When my husband [found out], we’ve been married 42 years, and I’ve never seen him cry very much, but he cried and he said, ‘I wish it were anything else but that,'" Scaperoth recalled.
Her husband knew how aggressive the type of cancer was, but Deborah knew she wasn't going to give up easily.
“Being the independent [woman I am], I was not going to allow cancer to take over my life," Scaperoth admitted. "You know, I guess I didn’t believe Dan, and I really should have believed him, because he understood the disease progression better than I did.”
She went through 16 extreme chemotherapies, had a lumpectomy, and endured 35 radiations. After the chemo, her doctors said her cancer was gone and she thought she was cured of the cancer.
In 2018 her medical team put her on an oral drug for safety. For six months she walked around thinking she was cured and home free. She went on vacation, and when she returned, was getting ready for a wedding and noticed some spots on her skin near the surgery site.
Once again, her husband encouraged her to get the spots checked out. The doctor said it could be a rash, but Nina Reineri, the president of Breast Connect, urged her to fight for herself and get the spots checked.
Scaperoth was on a few different medicines for eight months after her initial surgery.
It was then they found the tumor and discovered her tumors had not gone away. In fact, they had grown.
Scaperoth went in for a mastectomy.
“Each stage I’m thinking ‘OK, this is it! I’m cured,’” Scaperoth shook her head.
After her surgery, she and her husband went swimming. She noticed more small bumps at the surgery site. She went to get them checked again.
She did proton therapy, but soon discovered some lymph nodes had cancer in them, so she went through radiation.
“At that point, Dan said, ‘You’re definitely metastatic, it’s just going different places,'" Scaperoth nodded.
He was right. Scaperoth found out about her metastatic breast cancer diagnosis and knew she would more than likely be on chemo for the rest of her life.
Now, she goes to the Sarah Cannon Research Center in Nashville for a clinical trial. She's in the first of three phases. The goal is to stop the cancer cells from growing.
Scaperoth knows the effect words from others can have on people like her who have the terminal form of breast cancer.
She can be treated, but she cannot be cured.
"We have to live with that every day," Scaperoth said. "Sometimes I think about cancer, sometimes I don’t, but it’s a scary thing being told. I’m used to people being able to fix things, and you can’t be fixed," Scaperoth explained.
She said support groups like Breast Connect help her through each day. She joined in 2018 and gained a community of men and women who are able to relate and lift each other through the diagnoses.
She knows there needs to be a cure found for the disease, and encourages everyone to donate to organizations aimed at finding the cure for metastatic cancer. Currently, only about 2 percent of funds from national breast cancer organzations go to metastatic research.
“Life is just not fair and at some point you’ve got to accept that," Scaperoth said. "But none of us want to give our life up. I have children and grandchildren and I want to live to see them grow up.”
She encourages people who know people with cancer to lift them up and ask how they are doing.
“People are afraid of death themselves, and so they don’t want to talk about death or think about people they know dying, so that’s a really great thing to ask somebody, how they are," Scaperoth smiled.
CHRIS BETTS' STORY
Chris Betts is a young wife and mother. She knew she had a family history of breast cancer early on. When her mother was 38, she was diagnosed with the disease, but it was caught early enough that she was able to survive.
Betts decided to get her baseline mammogram when she was 28 so she could be diligent and keep an eye on things. For the next 10 years, she was either pregnant or breast feeding her three children: two boys and one girl.
When she entered her late 30s, she decided it was time to go back and get another mammogram to check in on things. She went to an OBGYN, who initially told her she wasn't old enough to get a mammogram.
Eventually, the doctor did a manual exam and found a lump. The doctor sent Betts for a diagnostic and biopsy. The test revealed she had hormone positive breast cancer.
Betts chose to do a lumpectomy. From there, she did chemo from July 2018 until the day before Thanksgiving.
After the new year she did her radiation. That ended in March and she felt good, satisfied she'd done everything that she could do.
Betts said what people don't understand about getting cancer is that you will constantly be worried for the rest of your life that it has come back.
“When you’re finished with treatment, it doesn’t end there," Betts said. "Like with somebody that has breast cancer, when you get an ache or a pain out of nowhere you worry."
In August of the same year when she finished treatment, she started to get a lot of pain. It started in her lower back and hips. It got progressively worse as time went on.
She got a bone scan in September and everything came back clear. They did tumor markers in November and again they said she was fine. By the end of November and into December, the pain was so excruciating she could barely get around.
“I had three little kids to take care of, I was homeschooling and every movement was difficult to get through and I didn’t know how much longer I could deal with it," Betts explained.
They sent her for an MRI and CT scan. That’s when they discovered the cancer had spread to her bones. She got the news on December 25.
“I got my results Christmas Day, saying ‘here’s your stage 4.’ It was a wonderful Christmas present," Betts said sarcastically.
The family was planning to move from South Carolina to Knoxville when she found out. She was able to start radiation and begin taking a plethora of other medications.
The bulk of the pain was caused because one of the vertebrae was pressing on her spinal cord. Once that was radiated, her pain got to a manageable level.
“At my three-month scan it looked like I was having response to the treatment, so I was thrilled and he told me, ‘Some women get years off of this line of treatment,’ so I was very hopeful," Betts said.
She went back for her three-month scan in fall 2020 and found there was some progression of cancer growth in her bones again.
She thinks about her family a lot when it comes to her diagnosis. She has three young children and a husband at home whom she doesn't want to leave behind.
“I’m more hopeful with them than I am more realistic with myself," Betts admitted. "I try to balance the hope and the realism.”
She knows her diagnosis isn't fair.
"No little kids should have to go through that," Betts said. "You know, they shouldn’t have to go through Mommy not feeling well and Mommy can’t play right now because of the treatments making Mommy sick and they shouldn’t have to go through the worry, 'how long am I gonna have my Mommy?'”
She said she wants people to know the reality of what she is going through and not tell her "oh, just be positive" or "you should eat better," because she has done everything she has supposed to, but the cancer is attacking her body. The words you say to cancer patients matter.
”People wanna know, ‘oh, when do you finish treatment?’ When I die. That’s when treatment finishes," Betts said. “I may look healthy to people, but that doesn’t determine how I feel inside. It doesn’t mean that the cancer is not eating away at my bones.”
She wants doctors to find a cure for metastatic breast cancer so she can watch her children grow up, so she can be there for all of their life milestones. She knows without a cure, she and thousands of others are left to sit and wait for their time.
"It’s not fair and it’s not just elderly women," Betts said. "I’m not an anomaly. There are so many young women, and young women die faster because it’s a lot more aggressive a lot of times when they’re younger.”
She said she feels isolated with her disease because so many people don't understand the struggles she is facing.
”It’s not fair to anybody, but I can’t help but feel jealous that oh—you raised your babies. You’ve got grandbabies," Betts explained. “I know it’s hard when your loved ones are facing death, but they’re the ones facing it and they just need you to be strong and be there with them and sit with it and not pretend."