Cancer Survivor Shares Her Story of Hope

By Lura Roti

Kay Koch lives in Salem, South Dakota. She is a wife, mother of three and a Farmers Union Insurance Agent.

She is also a two-time cancer survivor eager to share her story in the hopes that what she learned from her journey helps others.

"I want to share the message of hope. Cancer does not have to be the end of your story. There is hope," Koch said. "And you have to advocate for yourself."

Early in her cancer journey, Kay learned if she was going to survive, she had to advocate for herself.

She discovered a lump while nursing her second child. Her doctor ultrasounded the lump and told her it was nothing to worry about - it was just a swollen milk duct or galactocele.

But when the lump came back when she was nursing her third child, Koch wanted more assurance than an ultrasound could provide.

"The lump was bigger and harder and different. …One day I was reading a mommy blog and I saw a post where multiple women said when they were nursing, they had a galactocele and now they have cancer in the same spot. I am a huge nerd and love research. I did research and I learned that while a galactocele does not cause cancer, cancer can cause a galactocele. And this type of cancer cannot be seen on an ultrasound, it can only be seen by a mammogram."

She asked her doctor for a referral for a mammogram and her doctor said there was no need. Koch was 32. She had had three healthy pregnancies. She had just run a half marathon.

"My doctor said there was no reason for me to get a mammogram. I had to encourage her to order the mammogram."

Because her doctor was not concerned, Koch had to wait a few months to get the mammogram. "I asked for the mammogram in July, and they could not get me in until Halloween."

The mammogram image concerned the radiology technician. She grabbed the radiologist. The radiologist was also concerned and asked Koch if she had time for a biopsy.

"My OB was crying when she called me to give me my results. She said, 'I am so sorry, but you have cancer.' I said, 'I know.' This is the reason I encourage people to advocate for themselves. This is what I had to do, and I am so glad I did because I don't know if I would be where I am right now if I did not."

Even though Koch's breast cancer was stage 1, her oncologist was aggressive in treatment. Koch underwent a double mastectomy and because the cancer fed on estrogen, the oncologist put Koch on drugs to prevent her body from producing the hormone.

After the mastectomy, Koch was told she was cancer-free.

And then in 2019 she noticed a small dimple in her skin. "They tell you to watch for these. They did an ultrasound and told me it was just scar tissue."

For the most part, life returned to normal. And then in 2023, Koch began to have panic attacks.

"It was the most horrifying experience of my life. I thought I was dying. I could not catch my breath. And then one day my entire left side was numb. My husband took me to the emergency room and they said it was a panic attack and told me to see my primary care doctor for anxiety medication."

Koch's primary care doctor did not accept the diagnosis. "She looked at me and said, you are not anxious. You are one of the least anxious people I know."

Her primary care doctor had her wear a heart monitor. Her heart was fine, but Koch continued to have panic attacks. So, her primary care doctor scheduled her for a CT scan.

"My lymph node behind my sternum was the size of a tennis ball and the nodes in my right and left arm pits were large also."

The CT scan led to an MRI and the MRI led to a PET scan and a biopsy. Koch was officially diagnosed with cancer a second time the day after Christmas 2023.

"My doctor said, you are stage 4 and there is nothing we can do about this. Here is your timeframe and I'm sorry to give you this news. I told her, 'I am sorry I don't accept this, and will you support me getting a second opinion?' She said, 'I will do whatever you need me to do. We will fight for you.'"

A team approach to cancer treatment

While she was waiting for an appointment with a Mayo oncologist, a friend encouraged Koch to reach out to a functional medicine doctor at Between the Bridges in Mankato, Minnesota.

She met with the functional medicine doctor a week before her appointment at Mayo. "I asked him point blank, 'should I get chemo?' and he held his hand above his head and said, 'Yes. Your tumor burden is here. We can use chemo to get it down to a more manageable level. And there are things I can do to help the chemo do its job.'"

The functional medicine doctor also mentioned to Koch that he had worked with a specific oncologist at Mayo in the past. It was not the doctor that Koch was scheduled to see.

"Then, when I went to my Mayo appointment, the doctor I was supposed to see was not available and I ended up seeing the doctor the functional medicine doctor recommended. It was a God thing," Koch said. "This is the coolest part of my whole cancer journey. So many times, we could see and feel God lining things up perfectly."

When she met with the oncologist at Mayo, the doctor gave her hope. "She said we have this treatment plan that can cure this type of cancer."

The treatment plan included three phases. In Phase 1, Koch would undergo two different types of chemotherapy and an immune therapy once a week for 12 weeks. In Phase 2 the plan was she would undergo a more aggressive/harsh chemotherapy treatment once every three weeks for 12 weeks. The treatment plan would end with 25 radiation treatments.

Koch began both functional medicine and chemo treatments February 2024.

To increase the efficacy of chemo, the functional medicine treatment plan included infusions of curcumin - the bright yellow compound found in turmeric. And to protect her healthy cells, she was encouraged by her functional medicine doctor to fast ahead of each of the 12 chemo treatments.

"The fasting is supposed to encourage your healthy cells to essentially hibernate so that they do not uptake chemo. This helped with the side effects of chemo," Koch explained. "I did not get nauseous or fatigue. I did not feel great, but I never threw up - until the week that I did not fast. I ate on Sunday, got the chemo treatment Monday and puked until Thursday."

Due to some unforeseen complications, Koch's 12-week treatment plan took 16 weeks.

"The PET scan showed that my cancer was almost in complete remission from the first course of chemo. My Mayo doctor said this was unprecedented, they had never had anyone respond like this and they needed to go to the tumor board to present my case. The tumor board decided that I did not need the harsher chemo treatment, so I moved into radiation."

Dec. 4, 2024 Koch was told she had no evidence of disease. To give her peace of mind, Koch asked to receive a PET scan every six months.

"Going from being told, there is nothing we can do but keep you comfortable. To being told no evidence of disease, it was emotional," Koch said. "When I got told I had cancer, I was not emotional, I was in shock. When they told me no evidence of disease, I was so emotional. I went through so much and I was strong and brave, thinking, 'I just have to get through this.' So, when I got to the end, it was like, I made it. I did it. And I can get back to 'normal life.' It is hard and emotional, and it is amazing."

Faith and community support

Throughout her journey, Koch said she has leaned on her faith and the support she received from her family and community.

"The community of Salem rallied around us. They fundraised for us. They made us meals. From the time I was diagnosed, I did not cook for an entire year. Some community members even thought to bring us breakfast."

When her husband, Doug, could not drive her for treatments, her dad, Ron Knapp, or aunts, or friends asked if they could.

And throughout her treatments, Koch continued to listen to her body and advocate for herself. Each time she received push back - she persevered until she received the help and care she knew she needed.

Advocating for her own health may have saved her life twice.

During treatments she had a high fever and a small cough. She refused to leave the emergency room until they gave her a chest x-ray. The x-ray confirmed she had pneumonia.

Then there was the time when a nurse at the functional medicine clinic told her that her port was infected and she needed to get it looked at. When she reached out for an appointment, she was told to send photos. And when the photos were reviewed, she was told that there was nothing wrong.

By the time a doctor agreed to see Koch, the infection had spread to her blood. She ended up spending a week in the hospital.

"You have to advocate for yourself," Koch said. "So often we are taught not to listen to our intuition. I have a really strong faith in the Lord, and I have always loved the verse, 'walk by faith even if you cannot see.' I think that when I have a feeling about something, it is God's way of talking to me."