Independent woman, mom of two, support group advocate
ABOUT PATTI, IN HER OWN WORDS:
- I'd been diagnosed with early-stage breast cancer twice before. I was not prepared for my diagnosis of metastatic breast cancer, and I've realized that I'm not the only woman who didn't know you could get breast cancer without breasts.
- I have a great support network, including children, friends, and coworkers, but my strong will I can attribute to my mom.
- Some days are harder than others, but I’d rather say I’m living with cancer, not just having it.
My History With Breast Cancer
I’d been diagnosed with early-stage breast cancer twice before. The first was followed up with lumpectomies and my doctor said I had a 5% chance of recurrence. So I was shocked to be diagnosed a second time. That 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. But I was not prepared for my diagnosis of metastatic breast cancer, and I’ve realized that I’m not the only woman who didn’t know you could get breast cancer without breasts.
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 is not metastatic. But I think she worries because she always seems to get what I get. Both my parents are gone, but my mom was alive for two out of my three diagnoses. She was so supportive as well as all my friends, family, and especially former 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. Normally, I would not have asked, but you get to the point where you need help. 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 almost 14 years, or so I thought. It started when 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 them could find anything that was causing this problem, and I was even denied a scan. 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 never asked this before, but I had to go up to the grocery store staff and ask for their help to get my groceries to the car. I drove three blocks to my house where my son was 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. That’s when 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.
After the scan and talking to the neurologist, my new medical center contacted me within two hours. I was able to see my oncologist within a day and was told 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 stand with 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 the double mastectomy, I told my surgeon that I didn’t want to go through cancer again. And when the surgery was over, I thought I was good to go. I didn’t have treatment or anything, and I’ve never had IV chemotherapy. 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. I find having a plan helps me the most after the initial shock and all the crying. A friend of mine once told me that if your trash is overflowing, it’s time to take out the trash because that is the next thing to do. A plan gives you the next thing on the list to do.
So now what? What is the plan? When you have breast cancer and they cut it out, then you’re done; it’s great. But with metastatic, it’s not going away. This meant I had to find a treatment to fight it…
My oncologist had learned about IBRANCE at a recent conference. She told me right up-front about the possible serious side effects, including low white blood cell counts, and 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 ER positive/HER2 negative, I fit the bill, taking IBRANCE along with letrozole, which is an aromatase inhibitor.
I track my treatment on my phone, and what I find easiest for me is taking my medication with lunch. Since I started IBRANCE, I’ve had scans, and my doctor has been very happy with the results. I have 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 for other women it may be different.
My oncologist continues to monitor my blood cell counts and general health. She is very knowledgeable. I clear everything through her, and I like her whole team. She has a nurse that I also work with, but a lot of times my phone will ring and it’ll be my oncologist calling me. We have a good relationship; she keeps me informed, and I’ve built up a trust in her to watch out for my best interests. I feel lucky that I am where I am.
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. I’ve learned more from other women than I have from anyone else.
I have a great support network, including children, friends, and former coworkers, but my strong will 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. Before my third diagnosis, I was playing cards every Friday night, taking camping trips over the summer, visiting my daughter in New York, working full-time, and scrapbooking. Having metastatic breast cancer put a hold on my plans, but I’m still trying to do these things. 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. You need to keep pursuing until you get an answer. Never ignore any issues or problems that are chronic, and don’t let anyone ever tell you that it’s nothing. And even if you’re the only one fighting, still fight and advocate for yourself.