I met Melissa DiPirro at my gym about a year ago in a Zumba class. She is a young vibrant lady whose kindred spirit has brought me so much joy in exercise class. She can shake it like no one else I know. Her breast cancer survivor story is informative and humbling.
· Breast cancer incidence and death rates generally increase with age. Ninety-five percent of new cases and 97% of breast cancer deaths occurred in women 40 years of age and older.
· During 2004-2008, among adult women, those 20-24 years of age had the lowest incidence rate, 1.5 cases per 100,000 women.
· During 2004-2008, the median age at the time of breast cancer diagnosis was 61 years. This means that 50% of women who developed breast cancer were 61 years of age or younger at the time of diagnosis.
What was life like before cancer?
Before cancer, I was a typical 27-year old young woman trying to figure who I was in life. I was attending conferences for work, standing up in my best friend’s wedding, and having fun, but I still wasn’t in my groove yet. I was having relationship problems, financial problems, and all my friends were getting married. I think at that point everything was hitting me at once. The year before I was diagnosed was very interesting. I started working out; I was taking care of myself, watching what I was eating. I was weeding out the negativity in my life. Because of the instability going on in my life, I don’t know something just clicked and I wanted to get my life back on track.
How did you discover you had cancer?
I always had medical problems growing up and I knew the importance of screenings, but I was feeling fine. In November of 2007, I just went in for an annual exam. My gynecologist did a regular breast exam and he felt a lump. He said I was young and that it was probably nothing. Probably just a fibroid cyst, but that I should go to my primary doctor and have her look at it just to be safe. I am very cautious about my medical health so I went to the doctor the next day and she felt the lump too. They became a bit more concerned because the lump didn’t hurt. Looking back, I did have sharp pains, but they didn’t really bother me. I was a large-chested woman, so I didn’t think anything of it. I didn’t do self-breast exams even though I knew better. Most women have fibroid cysts. The breasts always feel a bit lumpy, so it is hard for the average woman to tell the difference. My primary doctor suggested that to be on the safe side, we should have it checked out further with an ultrasound, because when you are young you have very dense breasts and a mammogram wouldn’t be good test for me. They did the test and found the lump. The tech came back right away with a radiologist. This is unusual because they normally wait to give you your results. So I knew right away something was up.
They found that the lump was solid, so they suggested while I was at the hospital to go ahead and do a needle biopsy. Since my mom was with me in the waiting room, they did the needle biopsy right then and there. The radiologist said the results were 50/50. He suggested that I go home and rest until the tests could be officially read.
Did you start to freak out?
When all this was going on, I was like. “Ok. Do what you have to do.” But I kept thinking, I am 27 years old. You don’t get cancer when you are 27. You always hear about 40 year olds needing to get their mammogram and older people getting cancer, but I do have a family history of breast cancer. I really didn’t think anything of it. I had no symptoms. My family was very positive through the testing and there was really nothing we could do until we got the results.
Waiting. It was in the back of my head the entire three days I was waiting for the results. I went to work that Thursday and I was heading into a meeting when I got a phone call from the doctor. They don’t normally call you personally, so immediately I thought something might be wrong. He said. “I am so sorry, I have bad news. It’s cancer.” At that moment, I stepped into the hallway and my colleague walked past me and I dropped to the ground and said, “It’s cancer.” She helped me to the rest room, where I lost it. I just cried and cried for a few minutes. Then I went into shock. All I could think was, Ok. I have cancer. Now what do I do?
What did you do?
The doctor had given me a surgeon’s number and told me to go see him, but I needed to find out more information. So I called my doctor. I needed to go in and see her and talk to her. My friend and I went to her office and she took a notepad with us. When you hear a diagnosis like that you really don’t remember what is being said. So my friend took notes for me. To be honest, I don’t even remember the appointment. I remember the visit, but not what was said. I don’t even remember asking for the pathology report. I just went into the hallway and looked at it. Right across the top it said, “Grade three out of four” and “Eight out of nine.” There were all these scales and I continued reading, “Highly aggressive. ALERT. ALERT.” It freaked me out. I had Invasive Ductal Carcinoma, Triple Negative. What that means, is it is a type of breast cancer that starts in the duct, starts to break free, and then invades into the breast. It was Stage II. The lump was two centimeters around. Even though it was a very aggressive kind of cancer, thankfully it had not spread to my lymph nodes yet.
What was the surgery like?
Every cancer is different. Every treatment for a cancer diagnosis is specific to the type you have, how far it has progressed, and your genetics. I had surgery three weeks after my diagnosis. At first I had a lumpectomy, which means they just remove the tumor itself. The surgeon had a clean margin. Once they removed the lump they check the surrounding tissues and luckily there was no evidence of cancer, which was great news. They also inserted a port, which is how I received my chemotherapy treatments. Because of how aggressive my cancer was, they needed to treat it aggressively as well. Even though it had not spread, we wanted to take every precaution because I have six different types of cancer in my immediate family. I have a very strong family history and I was 27, which is really young to have cancer. My doctor actually did genetic testing, which is an option to learn more about your predispositions to certain illnesses. We found that I am BRCA2 positive carrier. BRCA genes are breast cancer genes, which increase your chances of breast cancer and other types of cancers.
What was chemotherapy like?
The port that they put in my body was not fun. It is a big piece of chunky metal inserted into your chest that just reminds you that you have cancer. It took some time to get used to — it is something so foreign sticking out of your body. I had chemo for four months. Every other week, I got sick. Different drugs react differently and I had three different kinds of drugs. The first four rounds of chemo were with two different drugs. And those drugs make you really nauseous and one makes you lose your hair. The second round of drugs caused bone pain, which meant the nausea went away and I felt a bit better. I also had to go to the doctors all the time to get shots to help keep my white blood count high to fight off infections.
How was it to lose your hair?
I was 27 years old and had long brown hair — longer than it is now (I recently donated my hair to Children With Hairloss). I was dating, but I didn’t have a boyfriend. When they say you lose your hair, you lose all of it. I lost my eyebrows, my eyelashes, and my arm hair. One good thing is you don’t have to shave for a while. So honestly, I looked at it as a positive thing. Your hair doesn’t normally fall out until after your second chemo, so it took about four weeks for it to start falling out. I did cut my hair shorter so the transition would be a little easier. I planned a head shaving party. One day in the shower, clumps started coming out. I remember feeling panicky, like, “Oh my gosh. This is real now.” But honestly I wasn’t sad about it because I went into full on survivor mode. Sitting in the corner crying about is not going to do any good, so I had to fight it. My hair falling out was actually a sign that the chemo was working. To me it was cool. So I said to myself, Ok, let’s do this!
I had such an amazing support group who were on standby for my hair shaving party. I called them all over and we had pizza, pop, and munchies. Everyone came and my brother and uncle shaved their heads first. I did get tears in my eyes, but seeing my support system there helped so much. It was kind of a shock at first to see myself bald, but I was always envious of men who can just take a shower, throw some clothes on and go about their day. I didn’t have to worry about my hair getting frizzy, going flat, or having a bad hair day for about eight months. It was liberating and I actually got a lot of compliments.
I did get a wig to cover my head so I could still stand up in my best friend’s wedding. It was really uncomfortable, so I only wore it a couple times outside of the all the wedding activities. Most of the time I wore a bandana or different kinds of scarves. There are all sorts of places that offer head coverings, so I had lots of fun with it. It was really cool; I embraced the fact that I was bald. I was fighting for my life, so I didn’t really cared how I looked or what people thought. I always thought I had a big head, but when you lose your hair you realize you have a smaller head. I got a ton of compliments, especially when I had just a quarter of an inch of hair growing
What was the turning point in your survivor’s struggle to stay alive?
I don’t think it was one moment. It was an evolution of things. And when you in it you don’t realize the struggle until you can look back and review it. It’s kinda crazy that I am four years out from being diagnosed. Going through it you don’t see how strong you are. Before I was diagnosed, I remember praying to God for strength because I thought I was lost. I felt like I was weak because I was getting stressed about life, asking, “Why can’t I handle all this, God?” I look back on what happened and doing what I had to do to stay alive. I reflect on the fact that it is pretty amazing that, Wow. I did that. And I am here to tell you about it.
Were you able to work and what was the financial strain of being sick?
I was fortunate enough to have a great employer that offered insurance and disability. When I was going through treatment, I was too weak mentally and physically to go back to work. I was very lucky to be living with my parents. (Even though I had wanted nothing more than to move out before cancer hit.) I have the best parents and brother. My brother came with me to each chemo treatment. He was up with me when I was feeling horrible. He was always by my side. Financially, treatment is very expensive. A lot of people are not blessed with the support I had. But I still had needs. Insurance doesn’t cover the wigs, head coverings, prescriptions, or gas to and from the treatments.
How did cancer affect your family?
Me, I am fine. Knowing how this affected my family brings tears to my eyes. Anything else I can talk about, but when I think about the people who were there for me, it was amazing to see that outpouring of support. There were a handful of people that were at the surgeries and sat with me while I was sick. To have my brother at each treatment and watch these chemicals pour into my body for six hours and to know just how much family really means to me. How much they were there for me. They put on such a brave face and put their lives on hold for four months, all for me. I have no idea how they coped without showing me how scared they were. I know that I would be there for them in a heartbeat. It was interesting to see who was there. I have a log of every single card, email, and gift I received. I had a lot of people who cared about me. It was surprising to hear from people in my past as well as my present: my parent’s friends, my co-workers and so many people in between. It was a really good feeling to know that in tough times people really do come together.
Life happens. Life gets busy and you think of people, but don’t always reach out. It restored my faith in humanity.
After chemo what happened?
Originally, because of my young age, they wanted to preserve as much of my breasts as possible. But when the genetic testing came back, they recommended that I have a double mastectomy. I had four months of chemo and then about six weeks later, surgery.
What does it mean to a woman to have your breasts removed?
I was always well endowed and was always identified for my chest, but always wanted to be looked at in other ways, like for my blue eyes and my smarts. But I found that my breasts did not solely define me. There are a lot of reconstructive options that make my breasts look better than they did before. I put a positive spin on it and thought, I am going to have silicon implants and they will stay perky. But the reality is I will never be able to breast-feed my child and I lost sensation in my breasts, but in the grand scheme of things it was not as important as living.
How did they reconstruct your breasts?
After the mastectomy they left as much skin as much as possible. I opted to remove the areolas and nipples (some leave them) so as to prevent future cancer scares. They put in tissue expanders, which is a deflated type of implant in the breasts and then fill it up with injections based on how large the breasts will be. Then I would go in for a second surgery for the real long-term implants. But a cousin in Canada suggested I get the implants right at the first surgery instead of waiting. I talked to my surgeon about it. She gave me a couple of reasons why not due to the amount of tissue there and the opportunity for infection. To my surprise, when I woke up from my six-hour surgery, my parents said, “You have your implants.” Honestly, the first thing I thought about was, Oh my God. Are they big enough? (she said giggling like a school girl). Yes, they were. My surgeon did a good job!
Next, I had to have reconstruction of the nipple and the areola. One option is to get medical tattoos. Or they can take skin from your groin area, which is darker skin. Once your implants are in you have to wait another six months for tattoos, which is difficult to see your breast without an areola. I had a lady show me her breasts and what would happen. So now I am really comfortable with showing my breasts to other women who are wondering what the process is and how they will look afterward. The crazy thing is you get to pick the color of your tattoos. It’s cool that you can pick from a paint swatch. You can match your old color or pick something new. I have switched my color twice during my touch ups. I just have fun with it
Is there anxiety every time you go back to get your regular check ups?
When you are done with all your treatments and reconstructive surgery, you are left with the feeling that you are healed and all better now.
I have to see my oncologist every four months until I hit the five-year mark. Normally when you hit the five-year mark your chances for survival goes up significantly. You know, it’s crazy. Time really does heal. I am about four years out since I was first diagnosed. I remember when I finished my treatment (it took almost a year from start to finish) I had a lot of anxiety. At that time I was 28 years old, didn’t have hair, I had fake boobs, and wondered, Now what am I going to do with my life? And you are freaked out about every little health thing. I never thought I wouldn’t be worried every single day. I wanted to live. I wanted to be happy. I wanted to find love. I wanted to live for the moment. As the years go by, I really have come to terms with it and have accepted it. All I can do is keep up on my screenings. I take better care of myself and I eat better. I eat tons of organic vegetables and I try to eat healthy. I am very conscious about what I put in my body and about taking care of myself. I am really into the environment, like the chemicals we use in our households. I look closely at prevention of cancer. However, because I am a BRCA2 carrier, I have a 40% chance of getting ovarian cancer in my lifetime, which is pretty high. That is almost like flipping a coin.
What is life like after cancer?
That is a hard question. It evolves. I am in a different phase than I was last year or two years ago. You know I was 27 when I was diagnosed. This cancer was probably the best thing that has ever happened to me. As long as it doesn’t kill me it was a good thing because I have a very different perspective of life than I did when I was 27 years old. I feel like I grew 10 years in only the short span of one year. I was still me, but life was just different because I appreciated it a lot more. I volunteered before I was sick, but I just didn’t realize how life could really be short when you are faced with death. I learned to live in the moment. When I first finished treatment I was the happiest I have ever been in my life because I didn’t let anything bother me. I wasn’t too involved or integrated yet back into society. I didn’t have the stress of work and dating and I was just living each day. But then you slowly get integrated back into the groove and life starts again: you work, you date and you get hurt. A lot of things had changed. Physically my body had changed. I had to explain to everyone I dated that I am a breast cancer survivor. I had fake boobs and they had scars across them. And are they going to be ok with that? From a new romantic relationship stand point, it was difficult. Other than that, everything else was good. I was living my life and I was ready to take charge of it.
What would you tell the Melissa that is about to be diagnosed with cancer knowing what you know now?
Do not stress the small stuff. I know that is such a cliché that is passed around, but it is true. If you have a bad hair day, or if someone looks at you wrong, even f you don’t have a boyfriend, don’t worry about it. Life has a way of working itself out. I would tell that Melissa to take care of her body, to surround herself with positive energy and positive people. Just live for the moment. And to remember that because life can get stressful and life can get away from you. One thing I always tell myself when times get hard is, “It could always be worse.” I know it is hard for a lot of people to think like that because so many go through really bad things in life. Life just isn’t fair. I sometimes think to myself, I have been through enough. Life isn’t easy. And it’s not going to be easy. But what is the alternative? I don’t want to be dead. I want to enjoy my family and my friends. I might not have everything that I always dreamed of having, but you know what? I have it really good. I would tell pre-cancer Melissa to live life and enjoy it because you have great friends, great family, and you have a roof over your head.
There are a lot of things people need to know about being a young cancer survivor, breast or not. Cancer happens to young people. First and foremost is awareness. It starts with prevention. The screening guidelines are out there for a reason, and there is a population that is more susceptible to cancer. I know many people think, This isn’t going to happen to me. I was one of those people. Well you know what? It can happen to you. You need to learn what is happening with your body. Make time to go to the doctor. Don’t be scared. If cancer is detected early your survival rate is so much higher. If I had not gone to the doctor when I did for my annual exam, I don’t think I would be here now. I am very grateful for that because it saved my life. Prevention and screenings really do save lives.
Live life and live in the moment. Anything can happen in a split second and you don’t want to have any regrets or think, I wish I would have done that, or I wish I would have said this. Say, “I love you” to everyone that you want to say it to. Just be you. In the grand scheme of things it’s your life and you have to live it.