Kerstin’s story

In Blog, Our Stories by karineumeyer

Kerstin Cholewin of Chicago, Illinois, was diagnosed with stage 3C low-grade serous ovarian cancer in 2021 at the age of 36. 

A middle-school French teacher with two daughters, she started to experience bloating, feeling full, and abdominal pain in May 2021. 

I have a history of ovarian cysts, having had two laparoscopic procedures within six months of each other in 2006,” she said.

An ultrasound confirmed a large complex cyst and her blood work showed an elevated CA-125. Her doctor performed surgery, removing a tumor from one of her ovaries and 1.5-2 liters of fluid in her abdomen (ascites). 

“Waiting for the results of the biopsy was the most challenging for me. It can be very scary not to have clear-cut answers,” she said.

“The pathology showed a serous borderline tumor with a microinvasion on one of my ovaries and abnormal serous borderline cells in the ascites. Honestly, this report brought a lot of uncertainty and confusion to the equation. I was told, ‘It’s not cancer, but it’s not not cancer. It might become cancer, but it might not.’ 

“At this point, I had my moments in which I felt overwhelmed, but God brought me peace that may seem unimaginable. He has been present during this whole process, and I truly believe He had a hand in bringing the medical issue to light so early on. 

“A well-known verse that brought me comfort was ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future.’ ” — Jeremiah 29:11. I trusted in God’s plan for me. God doesn’t promise to make things easy in this life for us, but He is here to walk alongside us and comfort us.

“Being blessed with two daughters and wanting to be aggressive in fighting this ‘not cancer but not not cancer,’ I made the decision to have a full hysterectomy. My doctor, Dr. Pant, removed the other ovary, the uterus, the fallopian tubes, and part of the omentum (a tissue that lines your abdomen). He found and removed flakes of the borderline serous tumors scattered throughout my abdomen. Afterwards, he felt that everything that was visible was taken out. Excellent news!

“I’d like to say that’s the end, but it’s not. I spent the majority of the beginning of my recovery doing research. I found support groups online: women who had been diagnosed with serous borderline ovarian tumors and women who had been diagnosed with low-grade serous ovarian cancer. The cancer I might have but might not. The cancer it might become but might not. I read these women’s symptoms and stories. They sounded a lot like mine. I learned, through both my doctor and these groups, that this type of ovarian tumor/cancer is rare. 

“There are about 1.3K women in the world that are part of the support groups I found. My doctor told me there isn’t a single study that exists that follows women in their thirties, diagnosed with serous borderline tumors, their treatment and their prognosis. This unfortunately means there aren’t clear steps to follow, therefore my case was going to be presented to the tumor board of the hospital. This meant there would be a lot of eyes on my case to help guide my next steps. I was very grateful for all that my doctor, nurses, pathologists, and other doctors were doing for me.

“In true Kerstin fashion, what did I do next? I started researching. I looked for everything I could find on serous borderline ovarian tumors. I looked for everything I could find on low-grade serous ovarian cancer, even though that wasn’t my official diagnosis. 

“Here’s some of what I found on low-grade serous ovarian cancer:

  • One woman in a thousand will be diagnosed in their lifetime. 
  • A disproportionate number of younger women are diagnosed with LGSOC versus ovarian cancer overall.
  • It typically grows slowly, which makes it difficult to treat. Chemotherapy drugs target fast-growing cells.
  • It was classified as its own type of cancer in 2004.
  • The “grade” refers to the degree that the cancer cells deviate in appearance from normal cells.
  • “Serous” refers to the type of cell affected. Serous cells secrete a watery liquid.
  • Low-grade serous is one of five epithelial ovarian cancers and one of thirty ovarian cancers.
  • It has a high recurrence rate.
  • 1% of research papers on ovarian cancer are about low-grade serous ovarian cancer.
  • There is no screening test. If you have symptoms for longer than two weeks, a CA-125 blood test and trans-vaginal ultrasound can detect it.  *Sources listed below.

“In my research of medical journals and online support groups, one doctor’s name kept popping up: Dr. Gershenson. I read that he is one of the doctors that helped identify LGSOC as its own type of cancer and is part of many clinical trials. What my doctor in Illinois said about there being ‘no study’ and the fact that my case was being brought to the tumor board for multiple opinions kept replaying in my mind. The thought of getting a second opinion turned into a phone call to MD Anderson in Houston, Texas. After reviewing my case, Dr. Gershenson agreed to see me. 

“In October 2021, I flew to Texas and met with Dr. Gershenson. Prior to the meeting, I had my pathology slides sent to MDA, so that their pathologists could examine them and give an opinion. The result? I was diagnosed with Stage 3C Low-Grade Serous Ovarian Cancer. When examining my pathology, the team in Texas interpreted the serous borderline cells to be cancerous. The team also believed that the cells found in the fluid were not just sitting on but had penetrated the surface of my omentum. Dr. Gershenson’s recommendation was to start some type of treatment, pretty much right away. This was a bit of a shock, seeing as the week prior, the tumor board in Illinois recommended surveillance and tests every three months.

“Later that same week, I had my six week follow-up appointment with my doctor. That meeting changed from a follow-up into: let’s schedule a port procedure, chemotherapy education and chemotherapy infusions. My doctor has been and continues to be amazing. He has given me top care and is willing to work with another doctor to continue giving me the best care possible. My doctor told me that Dr. Gershenson is one of three of the world’s top researchers on low-grade serous ovarian cancer and greatly respected in the medical community. I am so grateful that both my doctors, in Illinois and in Texas, were able to have a phone conversation to discuss my treatment plan.

“At this point, I had not shared my ‘not cancer, not not cancer’ diagnosis with my students, frankly because it was so confusing. I had missed two months of school, and now chemotherapy was in my near future. After consulting with my family and other patients like me, I decided to continue teaching during chemotherapy. Chemotherapy infusions would be every 21 days. The week of chemo, I would stay home, teach the subsequent two weeks, and then repeat five more times. I went back to school for two days before I started my first round of chemo. In that time, I was able to share my diagnosis and the treatment plan with my students.

“My students have been phenomenal. They have been caring and considerate. We have talked about cancer, chemotherapy, side effects and more. I’ve given them the opportunity to ask me anything about what I’m experiencing. They ask, and I answer. Teaching French and sharing my journey with my students has become very special to me.  

“I had my last round of chemotherapy at the end of February 2022. So far, the treatment seems to be working. My CA-125 levels have decreased from the surgery and are staying relatively level. After my last infusion, I had a CT scan which came back clean. I had discussions with both my doctors, in Illinois and in Texas, and I started taking Letrozole. This is a maintenance drug that decreases the amount of estrogen in my body. Thankfully, I haven’t had many side effects from this medication.

“I am not typically comfortable asking for help. It is not in my nature to ask. I am stubborn and probably prideful, if I’m being honest. I prefer to feel like I’m in control. I felt awkward asking for help and sharing my medical journey. It is all very public when I consider myself an introvert. However, I was encouraged to ask for help and to share. I also believe in the importance of bringing awareness to girls and women. It is crucial that females are in tune to their bodies, so that they can recognize when something is not right. It is critical that women take the time to take care of themselves. If something doesn’t feel right, don’t wait. See a doctor. Get a second opinion.

“I have been humbled by the love and support I have received throughout this journey from friends, family and my community. One of my students said to me, ‘No one fights alone.’ I have felt so much peace during this devastating diagnosis and the treatments that followed. God is SO good. In Hebrews 13:6, it states, “So we can say with confidence, ‘The Lord is my helper.'” I believe the Lord is my helper, and I am grateful to everyone for allowing God to work through them, their prayers and their actions, to touch my life. 

“Cancer is part of my life now. It may grow again and come back in a year, maybe in five years, maybe in fifteen years; maybe it won’t come back. I don’t know. What I do know is that I will cherish every moment I have.” 

*B. Slomovitz, C. Gourley, M. S. Carey, et al., Low-grade serous ovarian cancer: State of the science, Gynecologic Oncology. DOI: 10.1016/j.ygyno.2019.12.033