Eleven years ago, when I was 57 years old, I got a call from my OB-GYN that a routine mammogram had shown some suspicious calcifications.
For some reason, I never thought that I was the type of person to get breast cancer. I had been relatively healthy all my life, and no one in my family had ever had breast cancer. It seemed like the sort of thing that happened to other people, not to me.
I went into the stereotactic breast biopsy with confidence that it was all a mistake — a false positive. But then the doctor told me the news: I did, in fact, have breast cancer. Looking back now, there are a few things I wish I had done differently from the beginning.
Here are three things I wish I had known when I was diagnosed with HER2-positive breast cancer.
For starters, I wish that I had known how serious a breast cancer diagnosis is.
I thought I would have a lumpectomy and that would be that. I was worried about the surgery, but not about the cancer, because I thought it had been caught early. But when an MRI of both breasts was ordered before surgery, doctors determined I had another small spot of cancer in the same breast. I went from stage 0 to stage 1. I was then scheduled for a mastectomy, rather than a lumpectomy.
I was shocked and overwhelmed. A mastectomy would be a major distortion to my body. How would I look and feel about myself?
I went to a plastic surgeon and saw before-and-after photos of reconstruction. There are many options for women who undergo mastectomies. Learn as much as you can about them. Also, be open to ideas that may not immediately appeal to you.
You are strong, but you need emotional support. You need to hear the experiences of other women who have gone through something similar.
Things were happening fast. I had to quickly come to grips with mastectomy and reconstruction. I ended up following my doctor’s advice and got a right-side mastectomy with a silicone implant in the mastectomy side, and a silicone implant in the other side (to help it match).
In the end, none of this worked out for me. The implants ended up giving me pain, so I had them removed in 2012. I wish I had been able to talk to other women who had gone through the same thing.
Prior to my surgery, I joined a breast cancer support group that was recommended by my hospital. At the time, there was a lot of discussion about reconstruction and what method looked best. I didn’t recognize it at the time, but in hindsight, I can see that I was in a state of grief over losing my breast. It wasn’t just medical advice that I needed, but someone with whom I could express my confusion and sorrow.
With a diagnosis of HER2-positive cancer, I should have had, at the least, a year of aggressive chemotherapy treatment. It might have saved me a lot of trouble down the road.
Because the cancer was at an early stage, it was thought that chemo wouldn’t be required. An Oncotype test of the cancerous tissue came back with a score that suggested a small chance of reoccurrence, supporting the idea that chemo wasn’t necessary.
Ten days after I had the silicone implants removed in 2012, my hip started hurting. I went to a chiropractor and then to an orthopedic doctor, who ordered an MRI. Breast cancer was the last thing I suspected. My hip was fractured in two places, and lytic lesions were seen throughout my pelvis. A biopsy confirmed HER2-positive breast cancer. More MRIs showed that the cancer had spread to my thoracic vertebrae, my skull, and my brain.
I’ve been a stage 4 metastatic breast cancer patient for the last 5-plus years. I’ve had surgery to replace my hip, a craniotomy to remove a brain tumor, several treatments of gamma knife radiation to my brain, and chemotherapy. I’m scanned often and watched closely. Soon I will start radiation therapy for my right supraclavicular lymph node. Without chemotherapy, I don’t think that I would’ve gotten to where I am today.
When given a breast cancer diagnosis, it’s important to know the different treatments that are available, such as radiation, chemotherapy, hormone therapy, and surgery. Talk to your oncologist about why they recommend a particular regimen for you.
Learn as much as you can about your particular subtype of breast cancer. Check out online forums where people with similar cancer diagnoses compare notes and experiences. This can open up a world of knowledge and friendships. Knowing others who are in your same boat can lessen feelings of despair and isolation. We’re all in this together!
Even though I can’t call myself a survivor at this point, I will say that my experiences with breast cancer haven’t been the end of the world for me. Rather, I am learning to love and cherish each day and each person with the urgency of knowing that life comes to a close for all of us.
I am more focused. There is no time to waste with things that don’t interest me. And I no longer put off things that I want to do for the future. I start doing them today.
Beth Cioffoletti is an interactive graphic and website designer living in West Palm Beach, Florida. She enjoys swimming, photography, and travel.