November 9, 2022

Monitoring risks with cancer history

Susan Clark smiling on a hike.

Cancer has been a looming presence in Susie Clark’s family.

Clark, a retired occupational therapist living in Madison, had eight female relatives diagnosed with breast, ovarian or colon cancer, including her mother and her sister.

She was vigilant about her health care and watching for any unusual symptoms, especially after her sister’s diagnosis of ovarian cancer in 2012. In November of that year, Clark noticed what felt like a slight muscle pull on her side while sleeping and a stitch when she laughed.

In February 2013, she lost her appetite. She could go all day without eating and not feel hungry, and when she did eat, she filled up quickly.

“That was when I began to suspect I had ovarian cancer,” Clark said.

She requested a blood test to measure her levels of Cancer Antigen 125, a protein that can be an indicator of ovarian cancer. Her results indicated high levels of the protein, but a CT scan and ultrasound did not reveal any tumors.

Her gynecologist referred her to a gynecological oncologist who recommended, at the very least, removal of her ovaries and fallopian tubes. During her surgery, they discovered many rice-like tumors throughout her abdomen—tumors too small to show up in imaging.

Clark was diagnosed with stage 3 ovarian cancer. A subsequent genetic test showed that Clark had the hereditary BRCA2 (breast cancer gene 2) mutation that makes her at higher risk of several cancers.

Clark was not surprised by the diagnosis, given her family history, but it was still frustrating because she had requested genetic testing from different doctors over the past 15 years and it was never done.

Following surgery, Clark began a weekly course of chemotherapy to kill or shrink her remaining tumors. She was in remission for about two years before another issue occurred in 2015. Clark is screened twice yearly for breast cancer, due to her BRCA2 mutation, and a mammogram revealed enlarged mammary lymph nodes near her heart.

Testing showed it was not breast cancer but an uncommon location for a recurrence of her ovarian cancer. She started another round of chemotherapy, and she added a new companion to her life: a poodle-Shih Tzu puppy named Pip, who provided comfort, joy and snuggles.

“She was the best purchase I’ve ever made,” Clark said.

About a year later, she had another recurrence of her ovarian cancer and started taking Olaparib, an oral therapy which blocks PARP enzymes from repairing cancer cell DNA.She also was diagnosed with early-stage breast cancer in 2017 and had a successful surgery to remove that cancer.

Dr. Ellen Hartenbach, Clark’s oncologist and chair of UW’s Department of Obstetrics and Gynecology, said it’s common for patients with BRCA mutations to have multiple cancer diagnoses at once, which is why close monitoring for additional cancers is very important.

Hartenbach said it’s important for people to know their family history with cancer, and those with many close relatives should seek genetic evaluation and testing for hereditary risk factors. Patients with BRCA mutations can work closely with their care team for increased cancer screenings, and they can also choose preventive surgical options to lower cancer risks.

“The bottom line is that women have to gather the information and make a personal decision,” Hartenbach said.

Clark agreed that knowledge is power and urged everyone who has a cancer history in their family to seek genetic counseling and testing. She has a niece who confirmed her BRCA mutation, and she has already had preventive surgery and will have increased surveillance for other cancers.

Clark feels grateful to still have a good quality of life through her treatments. When she does feel anxious, she reminds herself of a quote from the book “The Hardest Peace,” by Kara Tippetts: “Lord, do not let my fear of tomorrow rob me of my joy today!”

“There is always joy and wonder to be found in every day.” Clark said.