Having the Ball in Your Court Helps You Fight Cancer

CURE, CURE® Women's Cancers 2021 Special Issue,

Advocacy Groups | <b>FORCE</b>

A three-time cancer survivor discusses the importance of genetic testing, listening to your body and teaching family members about your experiences to potentially protect them from future cancers.

Three-time cancer survivor Wenora Johnson knows you can never assume you’ve beaten the disease.

Johnson, 54, lives outside Chicago in Joliet, Illinois, and works as an administrative assistant for a science and engineering research laboratory. She has a large support system that includes her husband, two daughters, four grandchildren and many more friends and family.

When she was 45, Johnson received a diagnosis of stage 3b colorectal cancer, for which she received treatment. In the four years that followed, she had no evidence of disease, but her oncologist consistently asked about her family history. Johnson knew that her mother had died of glioblastoma (an aggressive cancer in the brain or spinal cord). And two years after her initial diagnosis, she learned that her grandfather died at an early age of colorectal cancer. This prompted her oncologist to push for genetic testing to see whether Johnson had Lynch syndrome.

According to the Centers for Disease Control and Prevention, having Lynch syndrome increases a patient’s risk of receiving a diagnosis of colorectal, endometrial and other cancers before age 50. Lynch syndrome contributes to approximately 4,000 cases of colorectal cancers and 1,800 cases of endometrial cancers each year.

Johnson was hesitant at first to proceed with genetic testing; she had been free from cancer for four years and thought it would not make a difference. Johnson finally agreed, and in April 2016 the results showed that she had Lynch syndrome and a 60% to 80% chance of developing endometrial cancer. For years, she had had irregular bleeding and cysts but never associated those factors with endometrial cancer, Johnson says.

“That was my biggest indicator: that the ball’s in my court now (and) I can do something proactive about my own health,” she says.

This led to a conversation with her gynecologist about having a complete hysterectomy, since she was not planning to have more children.

“You can’t take for granted that you beat colorectal cancer,” Johnson says. “You want to take for granted that you can continue to beat other cancers, especially if you have a (genetic) mutation.”

In December 2016, Johnson underwent the hysterectomy, from which a biopsy showed she had stage 1a endometrial cancer. She had a grade 3 tumor, which meant it could grow quickly, and tested positive for the p53 gene, which can increase the rate at which cancer cells grow and spread in the body.

“That was a shocker, and it really showed me the importance of genetic testing to help confirm or ... push me in the right direction (to make) the right decisions about my health,” Johnson said. “All these little things ahead of time could have maybe helped me make an even firmer decision on getting a hysterectomy when I realized I no longer wanted any additional children ... instead of waiting 15 to 20 years.”

Johnson did not have to undergo additional treatments after the complete hysterectomy in 2016. But five years later, she still wonders whether the cancer may still be there despite her surgery.

“I still wake up wondering, ‘Should I have also had additional chemotherapy, or should I have had radiation?’” Johnson says. “Everything I’ve read is that usually with (stage) 1a (endometrial cancer), it’s total removal of everything, and then being retested again to make sure that you don’t have any additional evidence of disease. That’s been a little bit of a reassurance for me, but a part of me still wonders whether there’s something that may linger there that causes it to reoccur.”

The complete hysterectomy started early menopause in Johnson, who was then 50 years old. A week after Johnson returned home from surgery, the hot flashes and night sweats began, which she said were her biggest complaint. Within the past two years, Johnson has started experiencing heart-related issues such as palpitations, which her cardiologist said were associated with early menopause. She now takes a low-dose blood pressure medication to minimize the palpitations.

Johnson added that her love life also was affected by the early menopause; she did not want to be touched nor felt “the urge to feel even somewhat of a woman,” she says. She and her husband addressed these issues in counseling and have taken up new hobbies such as dancing.

Despite this, she wouldn’t trade menopause and its challenges for cancer.

“If I had to weigh which one or the other I would want, I would still opt for the (hysterectomy) because it was lifesaving,” Johnson says. “Now (we) have to deal with the emotional impact of that lifesaving measure. I have a great husband; you do some counseling, and you figure it out. We do other things to offset the days that I don’t feel my best as a woman. ... We’re in a really good place, but it can (cause) some emotional damage if you don’t recognize that it’s all tied to your hormones or how important those hormones are as a female.”

Shortly after receiving her diagnosis of endometrial cancer, Johnson noticed what she thought was a small pimple on her back. She visited the dermatologist, who removed it and determined that it was 2 inches of basal cell carcinoma.

“It shocked even (the dermatologist), and she said, ‘Wenora, we’re just going to send it off to make sure everything is OK,’ but in the back of my mind, I already knew what it was,” Johnson says.

All the basal cell carcinoma was removed, and Johnson visits her dermatologist every few months to monitor for abnormal skin pigmentations. These visits are in addition to her visits to her oncologist, gynecologist, cardiologist and primary care physician every six months.

“I go to ... any doctor in between that they send me to because, to me, survival is important,” Johnson says. “I feel if I can stay three steps ahead of Lynch syndrome because of these mutated genes, then I’m doing pretty darn good. I don’t look at it as an inconvenience; it’s about saving my life.”

Johnson emphasizes the importance of staying on top of her health, especially in hopes that it will influence her daughters, who are 36 and 28.

“I’ve been begging them to be checked,” Johnson said. “I hope that maybe the light bulb moment will come for them at some point in their life before it’s too late. They have a 50% chance of this happening to them as well. They are what I call walking time bombs.”

Johnson also encourages other people, especially minority families, to share their family medical history with each other so that they can act on it sooner.

“A lot of times for minority families, when someone passes away in a family, we’re never told what they passed away from,” Johnson said. “Be honest with your family members because ... had I known that (my grandfather) passed away at the age of 38, I could have been tested at the age of 30 for colorectal cancer instead of 15 years later.”

Johnson also advises women to pay attention to signs that may indicate what could be endometrial cancer, such as heavy bleeding and abnormal pains in the pelvic area.

“I encourage (women) to have those yearly Pap smears ... and keep that line of communication open with that doctor,” Johnson said. “(If ) you’re having pains, don’t lie about it. If you’re bleeding in between periods, don’t lie about it. Just don’t walk away and say, ‘It’s OK, it’s just part of my cycle’ or ‘I’m so used to it.’”

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