Just like everyone else, at different times in my life I've wondered how I would die. I figured it would probably be a heart attack; I never thought it would be cancer. But in 2007, I was diagnosed with invasive lobular carcinoma, a type of breast cancer that begins in the milk-producing glands (lobules) of the breast. It's invasive, which means the cancer cells have broken out of the lobule and have the potential to spread to other areas of the body. Invasive lobular carcinoma typically doesn't form a lump; instead, it causes a thickening of the tissue in one part of the breast. Because of this, it doesn't always show up on a mammogram. When I went into the biopsy, I was anxious, but mostly angry – angry that it hadn't been found sooner. My biopsy confirmed that the tumor was cancerous.
My surgeon suggested that I undergo chemotherapy and then surgery. I wanted a second opinion and was referred to an oncologist, a doctor who specializes in treating people with cancer. He suggested that I have surgery first and then chemotherapy and radiation therapy. I decided to go with his recommendation and had a total mastectomy, in which one of my breasts was removed. I also had 19 lymph nodes taken out; nine were found to be cancerous.
Before I started the radiation, the doctor did a bone scan and noticed something suspicious. He thought I had a "bone island," or enostosis, a benign lesion in the bone. However, it turned out that those lesions weren't so benign – they were cancerous. I had bone metastases, which happens when cancer enters the bone.
The news was a huge blow, because I'd read that if cancer goes into the bone, you have only one to two years to live. I couldn't have been more wrong. However, over the next three years, I took an aromatase-inhibitor, and it looked like the lesions were getting smaller and fewer in number. Unfortunately, my progress took a turn and results of a recent scan showed that the lesions were everywhere throughout my bones. I started having severe heartburn and could barely eat or drink. I found out that the cancer had moved into my stomach (unfortunately, something that is not all that unusual for lobular cancer). I began taking a medication which is used to treat breast cancer that has not improved or that has come back after treatment with other medications. The last time I went to the doctor, my CT scan showed that my bone was growing new bone, which is really good to hear.
One of the side effects of many of the drugs I've been on is hot flashes and joint pain. My legs and joints do ache – "boney ache" is what some people call it – but I know it's not as bad as it could be. One day it's one leg that hurts; the next day, it's my other leg. Sometimes going up stairs is painful.
I have asked "why me?" a lot throughout this process. I've kept journals for the past 25 years and decided to keep a separate cancer journal so I could keep the emotions over my illness distinct from my thoughts. My cancer journal, with a big pink flower on the front, is full of anger and questions about what might happen next. I'd pick a letter, like "D," and then list all the words beginning with that letter that were appropriate to cancer: discouraged, disfigured, disappointed. I have long lists of negative words in that pink journal.
Six years ago, I bought dresses for my granddaughters that were two sizes too large. And while I was paying for them, I did wonder if I would live long enough to see them wear them. Thankfully, I did.
I feel more hopeful now than I did when I was first diagnosed. I've learned that if an article was written over three years ago that says that people only have one to two years to live after cancer enters the bones, I should disregard it. With all the research and work being put into cancer treatment, there are people out there who have lived with bone metastasis for 25 years. I'm hoping to be one of them.
Be informed. Pay attention to what your choices are – there are a lot of drugs and options out there. If you think about it, this is the best day and age to get cancer. New treatments are being developed all the time.
Take care of yourself. Stay active, get outside, take walks, get exercise. Eat good food and see friends, even when you don't feel like it.
Set a time limit on doing research on the internet about your cancer. It can consume you. I don't allow myself to research past 8 p.m.; I close my computer and go do something else.
Don't let cancer completely dominate your life. Make sure you take the time to notice the big stuff and the little stuff. Life is short.
Carol Moore is the mother of two grown daughters and two grandchildren. She lives in Bozeman, Montana, with her husband.