‘Knowledge is power’ – Message of hope shared in cancer journey

Published 12:05 am Tuesday, June 18, 2024

SALISBURY — When Mary Willis Page heard the diagnosis of cancer, she was shocked.

While she wasn’t expecting to hear those words, Mary Willis is no stranger to the disease and its devastating effects as both her grandmother and mother battled cancer.

It wasn’t long after her mother died May 1, 2011, that she would begin her own journey, one that continues today as she remains vigilant about her healthcare.

It was October 1963 when her grandmother died of colon cancer, and being a very small child when it happened, Mary Willis said she grew up calling her Granny in Heaven. 

During those years, no one spoke of cancer, she said. “It was just hush, hush.”

As she grew older and reached her 30s, she began having colonoscopies herself and because of her family history, went every five years. In 2007, she had a dysplastic, or abnormal, polyp and for a while went yearly for checkups. 

Her mom, Reva Jones, had polyps, but when she was 73, she was diagnosed with Stage 3 uterine cancer, and Mary Willis, who was 48 or 49 at the time, said she went to visit her doctor, Dr. Lynn Anderson, and asked if she needed to get a hysterectomy. 

Anderson told her they were able to do a uterine biopsy in the office to which Mary Willis agreed to undergo. The results were negative, and she thought, great!

With Jones’ diagnosis, she received chemotherapy and radiation and was on blood thinners. Nearing the end of her radiation treatments and anticipating a trip to see her grandson graduate high school, a fall tragically resulted in her death.

“Mama died, and I was a little late, like 14-15 months, getting my physical,” Mary Willis said.

She went back to her doctor and told her that her mom had died and Anderson asked if she wanted to have that biopsy again, and she said, “sure.” That was March 7, 2012.

On March 12, she was just returning home from the YMCA and had a phone message from her doctor.

Mary Willis’ first thought was that with Salisbury being a small town and everybody knowing one another, “you gotta love Salisbury. The doctor calls you personally.”

So she returned the call and asked what was up. The answer was one that left her shocked and not able to speak.

“Mary, you’ve got cancer, and do you want to go to Charlotte or Winston, you need a hysterectomy immediately.”

She called her husband Tommy right away and when he got home they called the doctor back and were told it was uterine cancer.

They made the decision to go to Charlotte to the GYN oncologist and on March 15 had her first appointment with Dr. Matt McDonald of Novant Health GYN oncology. He confirmed the cancer and they would do the hysterectomy.

After sharing her family history with the doctor, McDonald mentioned there might be a genetic component to it, and would she meet with the genetic counselor. She agreed, and an appointment was set up for the simple blood test.

What they were looking for, she said, was “Lynch Syndrome, in particular, due to the gastro cancers that had been in my family. It affects roughly one in 300 people.”

And after the test, she found out that she had it.

“Lynch Syndrome is a genetic mutation of one of four different gene mutations, and I have the MLH1 gene mutation,” she said. “It is associated with a higher risk of a host of cancers, predominantly gastrointestinal, endometrial, ovarian, colorectal, bladder, bowel, pancreas, breast, brain and skin. So I jokingly say pretty much everything including the brain from your shoulder to your groin area.”

Her surgery took place April 16, a Monday. Waiting for the pathology report was horrible, she said. And when it came back that Friday, the word was the cancer had metastasized to her ovaries. Now, she said, “it wasn’t just a simple uterine cancer, it had spread and that upgraded me to a Stage 3.” 

But the thing about it, she said, with a laugh was “I felt perfectly fine. I had no symptoms.” 

Everyone was shocked by the news and treatment was set to begin a month later after she healed from the surgery. It would be six rounds of very, very strong chemotherapy every three weeks, she said.

Mary Willis said she didn’t know chemos and what was best so she decided to put it out on Facebook “because I didn’t know what to do and I didn’t want to die.” 

She looked on the American Cancer Society site and her particular stage and there was a big red box warning not to click if you didn’t want to know. She clicked and found that basically she had 18 months to live, she said.

She and her husband had two children, a daughter Anna who at the time was a junior in high school and a son who was a freshman at Chapel Hill, and she said, “I’m too young to die.”

So she put a message on Facebook that she would go anywhere that they could keep her alive.

“Survival rate, that was the bottom line,” she said.

It was the one year anniversary of her mom’s death and she and her husband flew to MD Anderson University of Texas Hospital in Houston for a consultation with Dr. Coleman. 

“It was so surreal,” Mary Willis said, “because here my mom had died and here I was flying to Texas for a second opinion to see if I was going to die sooner rather than later.” 

It turns out that Coleman and McDonald were good friends and he encouraged her to do the genetic testing, which she said was already in the works, and to remain with Novant Health because what they were doing was “state of the art, and they will take care of you” but he was available for consultation if needed.

One thing, he said, they would do was check the pathology since they are a teaching hospital and many times see something different as they look only at uterine slides all day long and no other kinds. 

She was just days away from starting chemo when she received a call from Coleman who told her yes, she still had cancer and still needed chemo, but they saw something different.

He told her “you have what is called synchronous primary, which means you have uterine cancer and you have a separate ovarian cancer at the same time. And that’s directly related to Lynch Syndrome that you can have multiple cancers at the same time.”

Ovarian cancer really scares her, she said, because often it’s caught late as the symptoms are very silent. However her’s was caught early because of her uterine cancer and the biopsy.

And while she still faced cancer and chemotherapy, learning this news lowered her stage “because it had not metastasized, it had not left the organ and traveled out of the uterus up to the ovaries. It had stayed confined to the uterus and the ovaries and hadn’t spread.”

Her first chemo treatment was May 24 and it was on this date she received word from the genetic counseling that she was positive for Lynch Syndrome, news that didn’t surprise them and which explained various things about her health.

Our DNA reproduces and when an error in the DNA happens, it corrects itself; however, with Lynch Syndrome, she said her system does not autocorrect and when there are big errors and they keep on reproducing that’s how cancer can come about.

Her treatments were difficult, getting to the Charlotte center at 8 a.m. and leaving at 5 p.m. “It took a lot to get me through that,” she said.

Losing her hair, she bought some wigs and gave them names — Faith, Hope and Love. Sometimes they would get hot and slip, she said with a laugh, and started wearing scarves. With her scarf and big hoop earrings on, she said, “I thought I rocked the pirate-look.”

She got fake eyelashes which made her look normal and even though people knew she was sick with her scarves on, she wanted to look good and put on makeup, and “yes, I was the cancer girl, but I looked pretty good for being a cancer girl,” Mary Willis said.

Learning she had Lynch Sydrome, they had to face the fact that it is a condition passed from a parent to their children and there was a chance their two could have the mutation.

“There’s a 25 percent chance that both my kids would have it, 25 percent chance neither would have it and a 50 percent one would have it and the other wouldn’t,” she said.

And one by one, they told the children and they in turn went for testing. Stephen, she said, went to the Chapel Hill genetic center and one week later received his news. He called his mom and said he had heard back from those genetic people and said, “I don’t have it.” She broke down.

Then it was Anna’s turn, and Mary Willis went with her to Wake Forest for her genetic counseling. The family was going  to eat out and rode separately, and Anna got out of the car crying. Her mom asked what was going on, and Anna said she had heard back. Mary Willis took a deep breath, said, OK, and was told that she didn’t have it either. “And we both broke down.”

“I won the genetic lottery, neither one of my children have this gene,” she said, “and this will die with me, at least in my family line.”

The genetic center, she said, gave her knowledge and that knowledge is power. It helped her understand and be able to share with her family that “having the gene mutation does not mean you are doomed to cancer. It just means you are at higher risk, which is knowledge, which to me is power” and therefore one can get started with screening early and become educated.

The genetic counseling also provided peace of mind for her with her children “even though there was that anxious time while you’re waiting,” she said.

For a long time, Mary Willis said cancer was what she thought of when she first woke up and her last thought at night. It occupied her mind when she was going through treatment and after treatment, because she said, “it’s like now I’m done, now what? What happens if those rogue cells come back? So I was spending a lot of time thinking about what tests do I need?” 

During those anniversaries of when things happened, she would get things in her head and be anxious, and she told McDonald she needed a point guard.

“I need someone that knows it all and knows the research because I don’t and you’re part of my team, but you’re not my point guard.”

McDonald told her there was a Novant Health high-risk clinic she needed to go to. While all these doctors know their areas and she feels well cared for, it was at this clinic that she got her point guard (Adult Nurse Practitioner Amy Bush).” 

Mary Willis said, “I’m so excited to be alive” and said she is a survivor and warrior and if she can help lead someone and alleviate some fear, then she wanted to share her story and hopes someone can take a glimmer of hope and advocate for themselves. “That’s one of my messages,” she said. 

“Talk to your doctor, find a team and don’t be scared of knowledge. Knowledge is power,” she said.

Part 2 of this serialized feature will share about the high-risk clinic and Mary Willis’ point guard, Adult Nurse Practitioner Amy Bush.