In honor of Breast Cancer Awareness Month, we asked three inspiring Chicagoans — a survivor, an educator and a doctor — to tell us how they’re facing the battle against breast cancer head on, and urging others to follow suit.
AS TOLD TO RACHEL BERTSCHE
Breast cancer survivor and a patient of the lynn sage cancer research foundation survivorship program
I was diagnosed with breast cancer in April 2013. Lying in bed one night, doing a routine breast self-exam, I felt something different — it almost felt like part of a bone in my chest. I did my exam regularly, and I’d never felt this before, so I went to the hospital the next day. It turned out I had stage 3C breast cancer, with 10 cancerous lymph nodes.
It’s a scary moment when you find out you have breast cancer. The first thing I thought of was my grandchildren: I’m not going to get to see my babies grow up. I thought I’d been delivered a death sentence. But the doctors and support staff at Northwestern, they took me in like I was family and they gave me hope. They told me everything I would need to do, they introduced me to the staff I’d be working with, they gave me pamphlets and journals and made me feel taken care of from the start. To anyone who is facing a cancer diagnosis, my first piece of advice is simple — take control of your care. If your doctors make you feel uncomfortable, if you don’t trust you’re getting the care you deserve, find someone new. This is your life. You deserve the best.
In June 2013, I had a successful right-side mastectomy, followed by eight sessions of chemo and 32 sessions of radiation. I didn’t do reconstructive surgery — instead, I opted for a prosthetic breast. I slip it inside my bra, and I wear that prosthetic breast faithfully. It’s my own and, with it, I feel whole. I feel complete and I feel healthy.
Since my diagnosis, I meet women all the time who are battling breast cancer. I meet them at the University of Chicago, where I pick up my bras. I’d meet them at Northwestern when I was doing my radiation. I meet them through my church. I tell everyone the same thing: This is not the end.
A breast cancer diagnosis can be so overwhelming that it’s hard to know which way is up. The best thing you can do is surround yourself with experts you trust, and then follow their lead. Do what your doctor tells you to do, do what your radiologist tells you to do — trust the people who are helping you. And if you don’t understand something, ask. If you think a question is too silly or too dumb, ask anyway. This is your life and your body, and while doctors and nurses try to give you all the information you need, they aren’t mind-readers. They don’t always know what questions you have. But you have a whole team working for you — take advantage of that.
Even today, after my surgery, I still get support. My journey isn’t over. I take Anastrozole every day and will for five years after my surgery. I go to my oncologist, my radiologist and my primary care physician every three months. I’m in the Lynn Sage Survivorship Program, which helps me manage my post-treatment care. I don’t intend to travel this road alone — nobody should.
All my life I had a fear of turning 50. I never knew why. And then, when I turned 50, I was diagnosed with breast cancer. But today, I have no fear. I feel like I will live to be 100 years old. I really do.
For more information about the Lynn Sage Cancer Research Foundation and the Lynn Sage Survivorship Program, visit Lynnsage.org.
Bright Pink educational ambassador
I’m adopted and, when I was 26, I decided to search for my birth family. The agency that coordinated my adoption acted as the intermediary, and through my maternal aunt, was able to locate my birth mother. She and I exchanged several letters with each other, and through those letters, I learned I had an extensive family history of breast cancer that I’d previously had no knowledge of — my maternal grandmother was diagnosed when she was 32 and died when she was 37, my great-grandmother was diagnosed in her 40s and died at 50, a maternal great-aunt was diagnosed and died in her 30s, and my birth mother was a breast cancer survivor, diagnosed when she was 37.
I took all of this information to my gynecologist, who suggested I see a genetic counselor, who in turn thought I was an appropriate candidate for BRCA analysis, the test to determine if I had the genetic mutation that significantly increases a person’s breast cancer risk. A BRCA carrier has up to an 87 percent risk of getting breast cancer, and up to a 45 percent risk of ovarian cancer. In the general population, a woman with no first-degree relatives with these cancers has a 12 percent risk of breast cancer and 1.5 percent risk of ovarian cancer.
When the genetic counselor told me I had to come into her office to get my results, I probably should have suspected the outcome, but I didn’t. I went in casually, alone, and I’ll always remember the moment she told me I tested positive: It felt as if I’d been diagnosed with cancer right there. I was overwhelmed, and couldn’t stop the tears.
At the time, I didn’t consider surgery. I chose the surveillance route, alternating every six months between MRIs and mammograms coupled with ultrasounds. I did that for seven years — during which I had two children — until October 2013, when I had my scariest screening. My mammogram came back with something suspicious, and I was around the ages that my biological grandmother and mother were when they were diagnosed. Luckily, my health ended up being OK, but I decided it was time to move forward with a new course of action. I wanted a prophylactic mastectomy.
As soon as I made the decision to have preventative surgery, everything fell into place. I felt lighter. I’d read the literature on how BRCA cancers can be more aggressive than sporadic cancers, and that they have a higher rate of recurrence. I didn’t want to bear the burden of waiting for bad news any longer. I’d been scared to touch my chest — I did, for my self-exams, but I was constantly terrified of what I’d find. The weight of that anticipation was all-consuming.
Through Bright Pink’s Pink Pal Program, which offers peer-to-peer mentoring support, I connected with a woman who had already gone through surgery, and that was a game-changer. She was so well put-together and articulate and successful and intelligent. I thought, ‘OK, I can do this.’ Seeing this woman living a happy and fulfilling life gave me confidence that I could come out on the other side and thrive.
On Dec. 27, 2013, I had a skin-sparing, nipple-sparing, direct-to-implant procedure. It’s a very specific, specialized procedure, but I did my research and found a doctor who was an expert. When the surgery was over, I woke up, looked at my husband and said, ‘Thank God it’s over.’ In that moment, the weight was lifted.
Today, I have a less than 5 percent risk of developing breast cancer.
I had no idea the journey that would await me when I set out to find my birth family. But when it comes to a person’s health, knowledge really is power. I wake up, every day, filled with gratitude for the options that were available to me. Being armed with information gives you choices and allows you to take control of your destiny.
After nearly a decade of fear, I’m finally at peace with my body.
For more information about Bright Pink, visit Brightpink.org.
Director, Northwestern Medicine Developmental Therapeutics Institute
When I was a kid, people got ‘The Cancer.’ That’s what everyone called it — it didn’t matter what kind of cancer it was, or what stage. It was a death sentence. Today, that kind of top-level approach is unimaginable. We’ve made massive advances in cancer research, which are creating cancer subtype-specific therapies, and we’re at a place where a cancer diagnosis is only the beginning: You’ve got breast cancer, but what type of breast cancer, at a genetic level? What could your immune system do about it? What can your body do about it? These are the questions that doctors are asking, and that level of interrogation would have been inconceivable relatively recently. What it means is that in the fight against cancer, breakthroughs are happening every day.
I’ve been a cancer specialist for more than 20 years. Breast cancer — like any cancer — is a scary diagnosis. At Northwestern Medicine Developmental Therapeutics Institute (NMDTI), we’re particularly focused on personalized anti-cancer therapies, with the hope that in the future, sure, a diagnosis can still be scary, but it will be followed very rapidly by specific information to say, ‘This is what we know about you, this is what we know about the tumor and this is why we would recommend this specific approach for you.’ It’s highly personal, and we hope that the information, technology and answers available will make patients say, ‘I’m not going to be a victim. I can do something about this.’
The first thing a breast cancer patient can do is to get information. It’s so vital. The most important question a patient can ask her doctor is simple: ‘Are there any studies available for somebody in my situation? What are those studies and how do I access them?’ In the United States, the minority of patients with cancer never go into a study, and that’s just wrong. As doctors, it’s our job to make sure patients know that studies are available, but it’s always in a patient’s best interest to ask. Studies aren’t only clinical trials — they might be studies of survivorship, or of side effects of certain therapies. A study could get you into a community so you don’t feel alone, or it could help you realize that there are people trying to help you in all sorts of indirect ways that might not have occurred to you otherwise. There’s no stage of breast cancer that’s so good or so bad that you shouldn’t seek information and ask about studies. None. The rate of progress today is so great that it’s not too late for anyone.
Breast cancer will soon be a manageable diagnosis. There has been enormous progress in just the last 5 or 10 years, and I’m certain that the rate of improvement will accelerate. The cost of doing genomic analysis is falling; the ability to analyze data is getting better. This is hope based in firm science. We will get to where we want to be, offering personalized treatment and getting a meaningful response, in the form of either remission or tumor shrinkage. That is the reality.
After 20 years, here is what I know: My patients are smart people. They just need information, and I do my best to give it to them. Today, I can tell them that, as far as we’ve come, more improvements are coming, and they are unstoppable.