When Rachel Knop heard the news, she immediately thought of her husband and four daughters.
It was June 3, 2019, and Knop had just been diagnosed with invasive ductal carcinoma, which makes up 70-80% of all breast cancers, according to the American Cancer Society.
Knop, who’s from Shelby, Iowa, wondered what would happen to her family.
“Instantly, for me, I thought I was dying,” she said. “I thought that was it, this is it, I have cancer. When you’re 38 years old and you’re told that you have cancer and really no family history, I thought that was it.”
Knop had a double mastectomy on Aug. 20, 2019. During the operation, doctors found the cancer had spread into a lymph node, so Knop knew she would need radiation.
The next day, she went back for reconstruction surgery. Three weeks later, the mammogram came back, showing a higher risk of the cancer reoccurring.
In October 2019, Knop started chemotherapy. She underwent chemo every 14 days from October through February, then began radiation in March. That lasted until she completed her cancer treatment in May 2020.
Knop then entered Nebraska Medicine’s survivorship program, where she met Rachael Schmidt, a nurse practitioner who runs the hospital’s survivorship and cancer risk prevention programs.
Schmidt, who is in her ninth year as a nurse and her fifth as a nurse practitioner, said her job description varies depending on the day. Because she runs both the survivorship and the cancer risk and prevention programs, she’s only in the clinic about half the time.
The rest of the time, she works to develop research protocols and recruiting trials to come to Nebraska Medicine. She also develops relationships with both local and statewide organizations such as Susan G. Komen Great Plains and the Nebraska Cancer Coalition to help educate providers regarding cancer survivorship.
“It’s really a newer phase of care,” Schmidt said. “We’ve only known about long-term effects of cancer for the last 10 years, so many hospitals haven’t even had cancer survivorship programs until the last five years.”
Both women believe raising awareness for breast cancer is critical because it’s a widespread disease.
An estimated one in three women will develop cancer at some point during their lifetime, according to Schmidt. Of those, the most prevalent type of cancer is breast cancer, which affects one in eight women.
Breast cancer can be hereditary, but it can also be sporadic and occur in families with no prior history.
“I think making sure that people are aware that this is a frequent diagnosis and it can happen for multiple reasons is the most important thing to spread awareness,” Schmidt said.
Knop encourages women to listen to their bodies and discuss everything with their physicians. This includes their family history with the disease and any possible symptoms they may be experiencing.
“I didn’t even go to the doctor right away because I didn’t think it was anything,” she said. “It’s very important for women to make sure and do all of the mammograms and self breast exams, anything they can do to try and catch that in an early stage.”
Breast cancer patients aren’t alone in their fight. Nationally, there are resources available such as the American Cancer Society. These groups host numerous annual fundraising events like Relay For Life.
Locally, Nebraska Medicine provides a list of cancer resources on its website. The list includes both national and local resources.
One such local organization is Project Pink’d, a local nonprofit organization that provides tools, network and support to breast cancer survivors in Nebraska and western Iowa. The organization also holds several programs. Their helping hand program provides financial support. Their survivorship programs aim to help survivors tackle issues faced from their diagnosis to the end of their life.
A key event Project Pink’d holds is the Care to Share Thanksgiving event. The event debuted in the Bellevue area in 2016 and has since grown to the Lincoln area too. It serves as a day for breast cancer survivors to celebrate the holiday and share stories with other survivors.
Most years, everyone gathers in person. This year, the event will take place virtually on Zoom because of the pandemic, according to Kelly Konen, the organization’s marketing and communications manager.
Konen said it was important for the organization to hold the event despite the shift online amid the pandemic. It provides a much-needed opportunity for people to connect with other survivors.
She said in previous years, many attendees were either in the middle of treatment or recently diagnosed. Often, their spirits were low.
“They walk in the door and they’re just scared and frightened, and when they walk out the door, it’s amazing to see their faces,” she said. “They have so much joy and hope again, so I think providing the opportunity for these survivors to hear other survivors that were once in their place is really powerful.”
This year, there will be a fireside chat featuring a live panel of four survivors. The event will begin at 1 p.m. on Nov. 8, with a signup available on the Project Pink’d website.
In most years, the organization provides attendees with a fully catered Thanksgiving dinner for four people. Konen said they emphasized providing the dinner in other ways while discussing possible changes amid the pandemic.
“Those meals are so vital to survivors,” she said. “We have so many survivors who have received those meals in the past, and they’ve reached out to us, so we wanted to make sure they have that meal.”
The result is that volunteers will drop the meals on the porches of those in attendance on Nov. 15, the week following the event. Konen said around 190 survivors attended last year, with nearly 140 registered this year.
For Konen, her work with Project Pink’d is personal. She survived her own bout with breast cancer after a diagnosis in 2011 at age 38. Like Knop, she had no family history of the disease.
“Quite frankly, it was something that never crossed my mind, so I was completely blindsided by my diagnosis,” she said.
At the time, Konen was the mother of a daughter in second grade and a son in kindergarten. About a week before her diagnosis, she left her job after 11 years and became a full-time mom.
“I was looking forward to soaking up the summer with my kids and making lots of memories and tons of fun,” she said. “In an instant, my life changed, and I was fighting for my life.”
After countless tests and appointments, doctors diagnosed Konen with Stage 1 breast cancer. She underwent a lumpectomy, which differs from a mastectomy in that only part of the breast is removed. Konen also endured over 35 radiation treatments. For five years, she took Tamoxifen, an FDA-approved drug that acts on the estrogen receptor.
“I often say that early detection and my medical team saved my life, but it was Project Pink’d that healed my heart,” Konen said. “There’s so much more than just being diagnosed and going through treatment.”
Konen advised anyone recently diagnosed with breast cancer or going through treatment is to be their own medical advocate. She said to ask as many questions as necessary until you get satisfactory answers.
She also encourages people to remember that they aren’t in the fight alone.
“Give yourself some grace,” she said. “Allow yourself to feel, and when someone — especially a survivor — reaches out their hand to help you, grab it as tight as you can and don’t let go.”
Knop cautions those battling breast cancer to take everything step by step.
“There were so many days when I was three to five days out from chemo I was like ‘I can’t do this again. I’m done. I can’t do this again,’” she said. “You have to keep a positive attitude. You have to literally take it one day at a time.”