Independent woman, mom of two, support group advocate
ABOUT PATTI, IN HER OWN WORDS:
- Who knew you could get breast cancer without breasts? I didn’t; I thought I did enough reading and knew enough about breast cancer that I was well-informed.
- I have a great support network, including my two children, my friends, and former coworkers.
My History With Breast Cancer
By the time I was diagnosed with metastatic breast cancer, I had been treated for early stage breast cancer twice before. The first time was in 1995. I had lumpectomies in both breasts and radiation. My doctor said I had a small chance of recurrence. So I was shocked to be diagnosed a second time in 2001. That time was followed up with a bilateral mastectomy with no reconstruction; I opted to have both removed, thinking I would finally never have to do this again. Who knew you could get breast cancer without breasts? I didn’t; I thought I did enough reading and knew enough about breast cancer that I was well-informed.
I was raised in an Italian, Catholic family, and I have two grown children—Christopher and Anni—and one sister, who is four years younger than me. She’s had breast cancer three times as well but it is not metastatic. But I think she worries because she always seems to get what I get. Both my parents are gone now, but my mom was there for me during two out of my three diagnoses. She was so supportive as well as all my friends, family, and especially coworkers.
I never asked for help but during my other diagnoses in 1995 and 2001, both my children were very young, and I needed someone to help with them, and my mom stepped in. You get to the point where you need help, and you can’t do it all. I miss my mom the most, but am glad she doesn’t have to go through this again with me because it would break her heart.
I was cancer-free for many years, or so I thought. One spring, I had shoulder pain, which I attributed to arthritis and numbness in my lower right jaw. It was the numbness that bothered me more. It kept me up at night and was painful at times. I started my quest by going to see my dentist, three different times. I insisted it was a tooth issue, because what else could the numbness be? But my dentist couldn’t find anything wrong, so I then proceeded to the oral surgeon, then my local primary care physician, neurologist, and orthopedic doctor to find an answer. None of these doctors could find anything that was causing this problem. I was even denied a scan by my insurance company—not once but twice, knowing I had breast cancer twice before. I wonder now if my cancer would have been found sooner if I’d had that scan.
I was so frustrated that no one could help me, and in the meantime, my right shoulder was experiencing more pain. I can remember going to the grocery store, pushing the cart with my elbows and forearms because the shoulder pain was so bad and I couldn’t use my hands. Finally, the pain in my shoulder got so excruciating it brought me to my knees. I was literally on the floor sobbing. I was in so much pain, I had to ask the grocery store staff to help me get my groceries to the car. I drove three blocks to my house where my son was, walked in the door, and burst into tears, saying to him, “Something’s terribly wrong.”
Finding Out I Have MBC
I kept telling every doctor that I saw, ”I’m not making this up. Something is wrong with me, but I don’t know what.” I felt like I was the only one pushing forward for an answer.
I made an appointment at a major medical center with a neurologist, and thank goodness I did. It took a full four months to wait for the appointment but when I finally saw him and explained everything, he finally got me an MRI and then a CT scan, promising me he would find an answer. Believe me, I was so happy to finally have a doctor fight for me. It was after the CT scan that I got the call from him and was told that I would be receiving a call from my oncologist. Hearing this, my heart sank and I was speechless.
Within two hours my phone rang again. It was the nurse navigator at the cancer center where I was previously treated. She arranged for me to see my oncologist within a day. I finally received my answer, and it was everything I feared. I had breast cancer in the bone. I couldn’t believe it; the third diagnosis, of course, this was the worst. After years of being a ”Survivor” and being told I was cancer-free, here I had metastatic breast cancer. To this day, I still can’t wrap my head around it; how did this happen?
In 2001, when I decided to have my double mastectomy, I told my surgeon that I didn’t want to go through cancer again. But there I was. Apparently, those little cells love to stick around. And I was faced with all these ”what ifs?” I asked myself over and over again: What if I had gotten chemotherapy? What if I’d been on another treatment? But there are no answers.
Deciding Next Steps
All you can do is cry, pull yourself together, and then have a plan. A plan gives you the next thing on the list to do. Fortunately, my oncologist had a plan.
My oncologist had learned about IBRANCE at a conference. She told me right up-front about the possible serious side effects, including low white blood cell counts, and she gave me some information. But she was barely even done talking when I said, “Sign me up!” Later, when I sat down with a nurse, she gave me the possible risks and benefits for the drug. Since I have never had traditional chemo or any cancer drugs in the metastatic setting, am postmenopausal, and I am HR positive/HER2 negative, I fit the bill, taking IBRANCE along with letrozole, which is an aromatase inhibitor.
When I started IBRANCE, I had many bone scans and CT scans, and my doctor had been very happy with the results. I experienced side effects, including tiredness and lower white blood cell counts, though I was told that I could experience other symptoms. This is just my experience, and others may experience common side effects including infections or nausea.
My oncologist monitored my blood cell counts and general health. She was very knowledgeable. I cleared everything through her, and I liked her whole team. In between appointments, I wrote down my questions and kept them in my phone, so I always walked in prepared. After my basic exam, my oncologist always provided me time to ask all my questions. She knows me and anticipated it! I never felt that I was being pushed out the door. And the nurses at the center were my lifeline. They were so important to the communication process. I am no longer taking IBRANCE with letrozole and am now receiving a different treatment.
Living With MBC
I try to keep an upbeat attitude, but I have my bad days. It’s funny because when I speak about cancer, I get comments like, ”You don’t look sick,” but what they don’t see is the emotional pain that goes with this disease. I still have a good cry once a week, but at least I am not crying every day like I was. I’ve found the support I need to help me cope. It took me a long time to come to grips with this; the diagnosis hangs over my head constantly, and sometimes I act like it doesn’t exist. I know I had to figure out how to live with this, which is why I found a support group for women with metastatic breast cancer that helps me cope day to day. I’ve learned more from other women than I have from anyone else.
I also have a great support network, including my two children, my sister, my friends, and former coworkers, but my drive to live and survive I can attribute to my mom, who was a very strong and independent woman before it was cool to be one. More than anything, I just want to be around for as long as possible. I’m not ready to go anywhere yet. A friend says it’s in my genes, some drive in me to fight. All I know is that I’m not ready to go, and this is just another chapter in my life that I have yet to write.
I want to see how the story ends. As for this story, my life story, that’s still going, and I have a lot to look forward to. I’m retired now, but still keep busy and enjoy spending more time with my family and friends. Some days are harder than others, but I’d rather say I’m living with cancer, not just having it. And that’s why I feel like l am a very lucky person. Today I am living with this disease, sharing it with my body and that’s okay, I’m hoping it just stays put.
This is what I want for everyone—to see how their stories turn out, and maybe make a difference in what happens. If I had ignored my symptoms and taken the advice I was given, my story might be very different. Today, I’m grateful I kept pursuing an answer because now I have a strong voice to advocate for myself and for others.