I can still remember the day I got the call from Dr. Andrea Madrigrano, my breast surgeon at Rush.
“Deb, I’m so sorry, but it’s not going to be what you want to hear,” she said. “The lumpectomy confirms it is DCIS. You have breast cancer. The good news is, we caught it early, but we recommend a bilateral mastectomy.”
I don’t remember much after that. I tried to stay calm and ask questions on next steps. I’m a doer. Instinctively, I just set out to get this treated. My “let’s do this!” attitude kicked in.
But suddenly I felt my heart racing faster, my breath shorter, and I could not hold back the tears any longer. I started to weep uncontrollably.
I blurted out, “Oh my God. How do I tell my mom? How am I going to tell my parents I have cancer?”
On this Mother’s Day, as I plan a day with my mom, I cannot help but think back to this moment when I was finally diagnosed and staged out for surgery. How do you tell your loved ones you have cancer?
As an employee of a health care institution, I consider it my professional obligation to inform you that I’ve had one, and it ain’t that bad. Want to hear more? Perhaps not, but I’ll tell you anyway.
Colonoscopies generally are recommended for people age 50 and older, since they account for more than 90 percent of colorectal cancer cases. The procedure, which involves running a thin, tubelike instrument through the colon, helps doctors spot precancerous polyps so they can be removed before they turn into cancer.
As it happens, I wasn’t quite 50 when I had mine, but I had a few minor symptoms that might fall into the “cause for concern” category. My primary care doctor and gastroenterologist weren’t particularly alarmed, but they wanted to play it safe, and they figured I was close enough to my golden years to experience this rite of passage.
Gina meets with medical oncologist Marta Batus, MD, and thoracic surgeon Christopher Seder, MD.
As a lifelong smoker, Gina knew the risks of smoking — but, like many people, she pushed these thoughts out of her mind.
“For years, my very dearest friend and I would sit on the phone together, have coffee and smoke cigarettes,” Gina remembers. “Then she was diagnosed with lung cancer and died from it. Even though I saw what she and her family went through, I was still in denial that anything could happen to me.”
Five years ago, at age 70, Gina got a wake-up call to start taking control of her health: She was diagnosed with breast cancer.
She had a mastectomy at Rush and was soon cancer-free. With a new lease on life, she began running, cut down to three cigarettes a day, and started listening to shamanic drum chants and doing positive-thinking exercises. She also continued her regular breast cancer follow-ups at Rush with medical oncologist Melody Cobleigh, MD, and nurse practitioner Teri Dougherty, NP.
Still, Gina’s smoking history and age put her at high risk for lung cancer. So at an appointment last summer, Dougherty talked to Gina about her risk factors and suggested that Gina was a good candidate for a lung cancer screening test — a low-dose CT scan that can detect lung cancer at its earliest stages, before symptoms arise and when it may be most curable.
But their experience with these conditions isn’t just professional: Jenna has ulcerative colitis, and Emily has Crohn’s disease. Both are lifelong, chronic inflammatory disorders of the digestive tract that are treated with medications and often with surgery.
Recently, Jenna and Emily sat down to talk about their unique positions, and how their personal lives inform their work with patients.
Jenna: I’ve been a physician assistant at Rush for almost three years now. My decision to work in this field was strongly influenced by my own diagnosis of ulcerative colitis. After spending many years as an IBD patient, I felt that I could relate to my patients as a provider, and that’s why I decided to work in gastroenterology.
Emily: I had similar reasons for joining our practice as a PA nearly two years ago. While the majority of my patients don’t know that I have Crohn’s disease, I think I bring a unique perspective on topics that can oftentimes be both embarrassing and personal. Having been a patient myself for over a decade, I have learned to be the type of provider who I would want to take care of me.
I started smoking at age 18. My dad was a smoker, and he quit so that none of his kids would smoke, but everybody in the family smoked anyway. We were on our own to decide when to quit. There were seven of us, and I was the sixth one to quit. I just got to a point where I thought, “There has got to be something better than this.”
I originally learned about the opportunity to have a lung cancer screening from my family doctor, Jeremy Pripstein, at my annual physical. He explained that the government had a program for a free screening for people who had smoked for a long time.
I had never been physically active prior to 2010. In fact, at one point I weighed more than 200 pounds. But with three kids at home, I needed to make some serious changes in my lifestyle and get healthy for myself and my family.
So I started to run for fitness. I was fortunate and began losing a lot of weight. And as I lost weight, I became a faster runner. I signed up for some races and noticed that I was commonly in the top 10 or even in the top three. I got into triathlons to try something different and realized my results were excellent. I even qualified for the World Championships in 2011, in my first half Ironman.
I ran my first marathon in 2013 in under three hours, during which I qualified for the Boston Marathon. However, while I was training for the Boston Marathon my hip started really bothering me. I thought I would be fine if I just ran a little bit less. Initially for my training I was up to 60 miles a week. But once I injured my hip, I went back down to less than 30 miles a week, even in the mid-20s per week. But the pain still got worse and worse.
In 2009, I was diagnosed with breast cancer in my left breast and in some of the lymph nodes on the left side. I had a successful surgery and treatment with chemotherapy followed by reconstructive surgery. They removed 12 lymph nodes, and I had radiation. Everything was going well.
As I approached the five-year mark that would have given me a clean bill of health, I started not feeling well. I had a lot of pain in my upper back, and I felt a lump under my right arm. But my dad was dying at the time, and I was at the hospital a lot. I thought it was just fatigue.
When I went to the doctor, I was diagnosed with metastatic breast cancer in my bones. It was very, very aggressive. I went to the same hospital near my home where I’d received my first round of treatment. The doctor there told me that there was nothing they could do. That it was hopeless, and I only had a short time left to live.
I started to lose the hearing in my left ear when I was 16. I began wearing a hearing aid when I was in my last year of high school, around 17. Every year my hearing was getting worse. I kept changing my hearing aid, but eventually, I couldn’t hear anything in that ear. The hearing aid didn’t even help. And after a couple more years, I started to lose hearing in my right ear, too.
I kept to myself because I felt like I couldn’t connect with people anymore. I couldn’t hear people very well. I could tell they were laughing and talking, but I didn’t know what they were talking or laughing about. I’m a very social person. I love to go out. But I even quit my studies at the university in Saudi Arabia because I couldn’t hear well. It was ruining my life.
I went to so many doctors — in Saudi Arabia where I was living and then in Turkey. I couldn’t find out the reason for losing my hearing. And every year it kept getting worse. The doctors didn’t know why it was happening.
‘We’re going to Rush’
I came to the United States about five years ago on a scholarship to study advertising at the Illinois Institute of Art. While I was here, my brother researched the best doctors for me. He found an ear, nose and throat doctor who specializes in hearing loss, Dr. Mark Wiet. My brother said, “We’re going to Rush.”
When I met with Dr. Wiet, he just looked at my eyes, and he said, “I’m going to order a genetic test for you.” And then after we did the testing, he found out that I have advanced osteogenesis imperfecta. It causes hearing loss, among other issues. He just looked at my eyes, and he figured that out.
Because of the osteogenesis imperfecta, the color of my eyes is different. Instead of being white, the area around my pupil is blue-gray. That’s one of the signs of osteogenesis imperfecta. I went to so many doctors and nobody had known.
Help with hearing loss
Osteogenesis imperfecta causes problems with my bones, so I also see Dr. Sonali Khandelwal in rheumatology on a regular basis. Whenever she asks if she can bring in residents to check out my eyes, I always let her know that as long as they’re good looking, it’s fine with me. ☺
Even though the condition is something I’ll live with the rest of my life, just finding out what was going on with me was such a relief. And after Dr. Wiet put in a cochlear implant to help my hearing loss, I really got back my confidence. I started to go out by myself and go clubbing. I love, love dancing so much. I feel now like finally, I have myself back.