AnnMarie Giannino | My Recurrent Breast Cancer Journey
AnnMarie, a recurrent breast cancer survivor and founder of Stupid Dumb Breast Cancer discusses her cancer journey. Read on to learn more about her journey through cancer, parenting, and caregiving, and why she chose to join Count Me In, a patient-partnered cancer research initiative.
What is your cancer diagnosis story?
AnnMarie: The year before my diagnosis, I had hospitalized myself for a suicide plan. I worked really, really hard for an entire year to bring myself to a point where I could function again. Then, I was smacked in the face by a cancer diagnosis at only 40 years old. I felt like my body was failing me. Everything was failing me.
When I found a lump in my breast, I pressed on it and black discharge came out of my nipple. Scary! I called my doctor on Saturday and he said “Call me first thing in the morning on Monday and we’ll get you in somewhere.” He scheduled me for a mammogram that morning.
The technician who did my mammogram said that she didn’t see anything on the scan. So she did an ultrasound, still didn’t see anything. She could feel the lump. There was black discharge all over the mammogram machine. But she checked “normal” on my report due to nothing showing up on the scans, and told me to check in with my doctor in six months. My gynecologist insisted “Black discharge is not normal. I want to have you looked at again right now.” He had trouble finding a doctor willing to do another scan because my recent mammogram said normal. The doctor he located told me that she thought the lump was a papilloma (a growth inside the breast similar to a wart, possibly pre-cancerous). She ordered a lumpectomy, but everyone kept telling me that I was going to be fine. That it definitely wasn’t cancer. I had a weird feeling, but I trusted my doctors.
She removed the lump, and scheduled me for a follow-up appointment. It was an 8:00 AM appointment. The first thing she said to me when I walked in was “I wish I would’ve looked to see that you were coming in today. I would’ve had you bring somebody.” I asked “Why? Because it’s cancer?” And she replies “Yeah. It’s cancer. We need to get rolling with this.”
I wanted so badly to believe that it was nothing. But the whole time, my gut knew something was wrong. Immediately I started the whole treatment process with plastic surgeon and oncologist appointments. It’s all extremely overwhelming. The doctor told me that my lumpectomy didn’t get clear margins, so there was still cancer in my breast that needed to be removed. I was so scared. After my mental health crisis the year prior, I had worked so hard to get myself healthy again. Yet my body was still so sick, forcing me to continue fighting for my life.
One silver lining is that my best friend is a cancer research scientist. She was with me every step of the way and explained everything to me. She didn’t come with me to my doctor’s appointment but the office was right near the YMCA where she was working out. She called me right after the appointment (it’s like she has a radar!). I told her “Yeah, it’s cancer." She replied “You’re lying,” I said, “No, I’m serious.” She’s like “I’m in the Kohl’s parking lot, meet me there.”
I pulled in and she asked to see the pathology report. “Well, this is the initial biopsy. We gotta see what happens when the results come from John Hopkins.” I told her these results were from John Hopkins, and her next words to me were “Ah f***, you got cancer.” It may seem super small, but she got me to laugh at that moment when it felt like my whole life was falling apart. I needed that so badly. Humor became my go-to, I needed to have fun and just laugh.
I decided on a bilateral mastectomy, which was a hard decision for me to make. I didn’t love my oncologist, he wasn’t who I needed on top of my treatment and screwed up some things that led to me having to get chemo later. When they originally did my biopsy, I was diagnosed with Ductal Carcinoma In Situ (DCIS). When they analyzed my tumor, it wasn’t DCIS. It was Stage 1 Invasive Ductal Carcinoma. So many people treat DCIS like a non-cancer, which is a problem. Cancer causes mental and physical trauma at every stage.
You don’t really know what somebody is going through in life. Even a “simple” diagnosis to someone who is struggling, lacking a support system, lacking insurance, whatever it is, is very traumatic. We need to stop comparing cancers and saying “Oh, well they don't have it THAT bad.” There are different levels of fear and progression in how people handle things.
After I had radiation and my new breast implant surgeries, I started forming bad keloids. They hurt horribly and were also causing my MRIs to read inaccurately. Scar tissue can be confused with cancer tumors on those scans, so I kept having biopsy after biopsy on these spots. I went to my plastic surgeon to ask what could be done, and he told me “I’m not worried about your keloids. I’m worried because your implants are shifting into your armpits.”
No one ever said to me what these breast implants were supposed to feel like! Yes, they felt strange, but I thought I would just have to get used to the feeling of having implants under my skin. I ended up having the implants removed and doing the DIEP surgery (taking tissue from my stomach area and creating breasts out of it). I wish I would’ve done that from the beginning, but I also wish I would’ve waited a little while after these surgeries to let my body heal. My body was like “Dude, slow down. I need to recover a little bit here!”
That’s something we need to push more in the cancer community. There isn’t always a rush after your initial diagnosis. You can get second opinions and take time to make choices that are right for you and your family. Many people have more time than they think to slow down and compare the best decisions. Breast cancer especially affects your body so dramatically. You need to figure out what’s best for you, and it might not be breast implants. Maybe you need to sit with your bare chest for a little bit and understand what’s going on with your body before making any decisions.
What is your other chronic illness journey?
AnnMarie: Before cancer, I always had some unexplained issues with my body here and there. I was a personal trainer at the time, but there were certain exercises that I just couldn’t do. I would be walking up the stairs and suddenly my leg would give out and I would fall. Or someone would hand me something and I would drop it. It wasn’t because I didn’t think to grab it, it was because my brain wasn’t telling my hand to hold onto it. One day I was in Target and I suddenly couldn’t hear anything out of one ear. I felt this really weird almost vertigo-like sensation and I couldn’t move.
I made an appointment with an ear, nose, and throat doctor who ran some tests. She told me that I had TMJ (a temporary maw muscle disorder) and to take a muscle relaxer. That I was just anxious from having cancer. I tried to explain that it was something more than that. Also as a recovering drug addict, I didn’t feel safe "just taking” muscle relaxers.
One day I was doing yoga and felt a really weird painful sensation while in downward dog. I told my girlfriend who has Multiple Sclerosis (MS) about this, and she said “Oh, you really should talk to your neurologist about that.” When I told him, he informed me that this sensation was one of the most telltale signs of MS. When this nerve is affected by MS, it can cause shearing, unbelievable pain throughout your whole body. After a round of extensive testing, I was officially diagnosed with Multiple Sclerosis.
Cancer treatment can do one of two things for autoimmune disorders. It can either bring out dormant disorders or vice versa. Some people have had lupus, had a bad flare, been diagnosed with cancer, and then the lupus disorder completely goes away. Other people have lupus, get diagnosed with cancer, and then experience even worse flare-ups post-diagnosis. I think that’s what happened to me. I believe I've always had MS, but cancer just caused the disease to present itself harsher within my body. I also think having undiagnosed MS caused me more difficulties with some aspects of my cancer treatment.
Where are you on your cancer journey now and does it continue to affect your daily life?
AnnMarie: Cancer still affects my daily life. I’m still on medication because I’ve had cancer recurrences. This causes bald spots which affect my self-esteem. I have eyebrows that don’t match. This all seems super trivial, but having to live with it daily is difficult. It’s still hard for me to look at my body because it’s so scarred. I still have horrible brain fog that absolutely no one warned me about. These side effects are long-lasting.
It affects my kids because if I have a doctor’s appointment, they get really scared. Is Mom gonna be okay? When my dad was sick over the past few months before he died, I would pray almost every night that my cancer didn’t become active again. I didn’t want him to see that when he was going through so much. One of the hardest parts of cancer is your family having to deal with the pain, anxiety, and stress. There’s nothing they can do, and that’s frustrating to them. It becomes frustrating to you when they constantly ask how they can help, and there’s nothing. I love my family, I have a great family. I’m a very blessed person. But they don’t want to hear about my cancer experience every day, ‘cause it stresses them out. It’s so much easier to talk to others who have also been through cancer.
Having cancer changes the trajectory of your life. People look at you differently. They don’t always want to ask you to do things because they’re worried about how it’ll affect your health. You want people to treat you normally, but there really are things you can’t do anymore. I don’t drink anymore. I don’t usually care, but it is hard when you’re being pressured to drink at a party but also know how having that “one drink” will affect your medication. It’s so hard when you’re trying to live a normal life. One of the sayings I hated was “Everyone’s going to die someday.” Yeah, it’s true. Everyone is. But not everyone’s standing on a train track staring at the train coming at them. That’s not everyone’s life. Until you’ve been in that situation with cancer or some other illness, when you’re staring at that train and it’s coming right at you, you can’t understand what it’s like to be truly fearful for your life.
At my cancer center, I’m a cancer mentor. I’m constantly mentoring at least one person who’s recently been diagnosed with cancer. I always say to them “This is going to change your life, but you don’t have to change. Your life doesn’t have to become a bad life. You’ll have moments that are completely cancer-free, and I don’t mean in your body. I’m talking about a moment in your life, an hour, two hours, a week, a minute, whatever it is, where you aren’t thinking about cancer. You’re just living a life, and cancer does not come into your world and your vocabulary. Those are the moments you have to hold onto. You may not be officially diagnosed cancer-free, but you can live in those cancer-free moments to stay sane.” Being a mentor and sharing my story is cathartic to me. People write to me saying “Oh my God, I know exactly how you feel, and now I don’t feel like I’m making my problems up anymore.”
Why do you want your cancer experience to count?
AnnMarie: Because every story matters. Every single story matters. You may not relate to or understand my story, but someone else might. And that person might desperately need to hear from someone who’s gone through cancer and is now on the other side of it. No matter how small you may think your story is, it matters. And that has been very important to me, and that’s why I keep sharing it. My story matters.
I’ve heard so many people say, “I don’t have it as bad as _.” We start thinking our stories don’t matter when we start comparing ourselves to others. It’s all about supporting one another and being there for people, not comparing. Some people might not be able to share their stories, for personal reasons. I don’t judge them, I just share mine even more for that person who can’t disclose their diagnosis publicly. They might be reading this and connecting with it, but if I didn’t share, they would never see it.
We will likely never see a cure for cancer in our lifetime. However, we might be able to see other things. We might be able to see a way to stop the tumors from growing any further in Stage IV patients. This research can lead to more discoveries on what is causing cancer in the first place, thus stopping as many people from getting cancer. When you find out the cause, you’re one step closer to finding a cure. This is why I think Count Me In's mission of counting every cancer experience is so important. The more cancer patients' stories we include in research, the closer we are to figuring out what's causing these cancers.
Right now, so many organizations are worried about awareness. Awareness campaigns, new ad campaigns. Everyone knows cancer exists. Many people know the warning signs and know that they need to be checked by a doctor regularly. What we don’t have are enough research dollars. Research dollars are what make a difference in finding the cause, finding the cure, and stopping cancer. Count Me In is finding those research dollars and putting in the effort to help everyone with cancer.
What motivational message do you have for others in the cancer community?
AnnMarie: I’m not going to sugarcoat it. Cancer is gonna suck. I don’t care what kind of cancer you have, it is gonna suck. But it’s not gonna suck alone. That’s the key. You have people here who are ready and willing to help you, and you have to take them up on that offer. Now is not the time to be stoic. Get help. If you need someone to come over and vacuum, have them come over and vacuum. One of my biggest mistakes was not letting people help me. This would have not only helped my sanity but also theirs. People feel helpless, so if you give them small jobs like taking out the garbage or vacuuming, they feel like they’re doing something for you. It’s not your job to please people, but this can help you manage the way people handle your diagnosis.
It’s so important to have both in-person and online support communities. All of the medical professionals who make up your team can only do so much. They have so many patients to care for that their cup is limited. But you need support. You need to hear stories from people who have been in your shoes. Every hospital, doctor’s office, whoever should say to you “Oh you’re diagnosed with cancer, here’s a website you can go to for information that will help you and tips from other cancer patients.” It would help the doctor’s office in the long run! Cancer patients need to hear other stories, learn from other people, and see that they aren’t alone. Whether you share your story verbally, online, written, in video format, or by sharing your data with a research organization like Count Me In, you must be able to share it with someone.
Special Message for parents dealing with cancer:
AnnMarie: Be honest. I know it’s hard, but be honest with your kids. They’re scared and while they might not be saying it to you, they’re showing it in ways you may not even notice. The thing about cancer is that you don’t always have the answers. You may go to the doctor with one question and leave with five more. Tell your kids that! What they’re believing in their head is different than what’s happening.
I had pictures taken after I had my mastectomy. I said to my son, do you want to see the pictures? He wasn’t sure. I told him, well, you decide because I won’t make you. He decided that he wanted to see and his first reaction was “Phew!”. I was confused. He told me “Mom, I thought you had two gaping holes there. I didn’t know what it was gonna look like, I didn’t know it was going to be closed up.” Kids are making ideas in their heads, and you can help debunk those myths.
I also teach my kids about what it means to support organizations that truly help cancer patients. I always emphasize how important it is to support organizations doing actual cancer research. My son has already raised money for cancer research organizations at his school. Since Count Me In sends me a box for me to submit my saliva samples to their research database, I also plan to walk my kids through that and show them exactly what cancer research participation can look like.
Use your diagnosis as a learning tool for your kids. Use it to show them that they can be proactive in their health and how they can stay on top of the things going on in their bodies. One of the hardest, hardest things for me to come to terms with was that my kids now have cancer in their family history. As a mom, I felt like I failed them and that my kids would live in fear of cancer for the rest of their lives. I hated that. The only path to healing is teaching your kids to be proactive in their health.
If you could use one word to describe your cancer journey, what word would that be?
AnnMarie: Resilient. We don’t realize how resilient our bodies are. You have to build on that resiliency every day of your life. You have to keep remembering “I’m resilient. I’ve gotten through every previous hard day of my life, and today will not be any different.”
We’re all so impatient. We want everything done right away and don’t want to feel sick anymore. But that’s not life. We have to go through the hard parts to get to the next part. Part of being in the cancer community is looking back at those hard times, looking back at yourself, and saying “Damn I was so resilient. I kicked ass!”
Count Me In is a nonprofit patient-partnered research program that aims to accelerate the pace of cancer research by collecting and analyzing comprehensive data from patients with cancer. The program is a collaborative effort between patients, caregivers, researchers, and clinicians. To join the Making It Count movement, visit JoinCountMeIn.org.