After Michelle Picolo’s kidney cancer diagnosis last fall, her family and friends turned her world orange at every opportunity to show their support.
At her office, where she works for the state of Louisiana, her colleagues had an ‘orange day’ and threw an orange party complete with an orange-iced cake. Her daughters distributed orange rubber wrist bands to their school friends and gave her orange roses for Mother’s Day. On the days of Michelle’s two surgeries for full and partial nephrectomies, people shared pictures of themselves wearing orange in a private Facebook group. Her hospital room was full of orange decorations.
“If I was having a hard day, I would scroll through [the Facebook group] and look at all the orange pictures,” Michelle said. “Some people keep things private. That’s not my style! I want people’s thoughts and prayers and get their support.”
At the hospital, people would ask if the decorations were for Halloween since Michelle, 44, who was diagnosed with stage 3 kidney cancer last September, had her surgeries in October and November.
“We said, ‘no, it’s for kidney cancer awareness.’ They said, ‘y’all have such a good spirit about it!’ But, you can’t sit there and think the worst,” Michelle said.
Michelle had no other symptoms besides blood in her urine that she thought might be related to kidney stones. The diagnosis was a shock but this wasn’t Michelle’s first experience with cancer. She had been treated for melanoma when she was 21.
“At 21, you’re more invincible. There were no family and kids back then,” she said. “It was definitely harder to take the kidney cancer diagnosis than the melanoma diagnosis. I think that’s why I relied so much on the family.”
In addition to the encouraging voices around her, Michelle always had her husband or someone else with her during doctor appointments. Her sister was often on speakerphone during appointments, typing notes and sending them to their mother to collect in a binder.
It was important to involve her family because there is a strong genetic component to Michelle’s kidney cancer diagnosis. At the suggestion of her urologist at Tulane University Medical Center, Michelle underwent genetic testing and discovered she is BAP1+, which is one of the most common gene mutations in clear cell renal cell carcinoma (RCC).
Many people in Michelle’s family have had cancer, including her grandfather, who had kidney cancer. Since her testing, several other family members have completed genetic testing.
“The genetics has thrown me for a loop. Six family members tested positive for the BAP1 gene,” she said.
Both her daughters have tested negative, however. Michelle said she was in tears, relieved she didn’t pass the gene on to her children.
Going through genetic testing and learning your results can come with fear and anxiety, Michelle said. But as she and her family have learned more about genetic testing, counseling and awareness about early screening is a big part of their lives now.
“My cancer wasn’t caught until stage 3… People need to know sooner. Maybe surgery would [be less invasive] or kidney function could be better,” she said.
This makes the support from her community even more important.
“When I drive through the carpool line, seeing the orange bracelets makes me smile. But also, if they tell one person, or they remember one day in 20 years that 20 years ago, my friends mom had kidney cancer and we wore these orange bracelets, to me that means a lot,” Michelle said.
“Did any of those people in my office know anything abut kidney cancer? Probably not at the time. Now maybe when they see something orange they’ll think about it, or think, ‘maybe I should get scanned?’”