In honor of Breast Cancer Awareness Month, the ladies at Strong Girl Collective wanted to do our part to help educate future survivors and honor current survivors. I reached out to a friend, Robin, who shared little bits and pieces of her journey through breast cancer on Facebook and I asked her to share more. Her story is so powerful for many reasons: she found her cancer through a self-exam, she is a breast-imaging specialist for a living, and she was only 31 years old. I asked Robin to share with us so her story could empower women to literally take their health into their own hands through self-exams. Even if you are young, even if you are healthy, even if there is no history of cancer in your family, a self-exam could save your life. Robin told me she wants women to know that there is life on the other side of breast cancer. Please read her powerful message below and leave her comments of encouragement. Also, don’t forget to read our other post of one woman’s journey, six years after her diagnosis. For now, here is Robin in her own words:
Mammograms & Self-Exam
When I was a 2nd year X-ray student, I went through a rotation in a breast center. I remember seeing the love and camaraderie amongst the staff and patients and thought that was my fit. Life took me in different directions before landing me at Saint Thomas Midtown Hospital in Nashville. I started my employment there September 28, 2015 as a “breast imaging specialist” meaning I am able to perform all aspects of breast imaging. I not only perform mammograms, but also breast ultrasound and biopsy procedures.
I’ve always been a caregiver and I want patients to know that your mammographers care about you. The test isn’t comfortable, but we never have any intention to hurt you. We want you to get great images so that the doctors can do their jobs. Yes, it hurts. Yes, it was invented by a man. And yes, there might be follow up images ordered, biopsies performed, and lots of waiting for results. Believe me, the wait sucks for us as much as it does for the patient. I’ll check to see if the results are back 10 times a day because I don’t want a patient to wait any longer for results than necessary. Because if it’s positive for cancer then there are decisions to be made and nobody wants to wait until tomorrow for their world to be turned upside down.
But mammograms really are the best we’ve got. They’ve saved countless lives through early detection. If you perform your self breast exams and get your mammograms as directed then you’ve got a damn good chance. Where do young women fit into this equation? Recommendations have always been for screening to start at 40, and now even later. Even before 40, you need to be checked by your doctor and referred for imaging immediately if you feel a lump, have skin or nipple changes, or have pain that is outside your normal cycle.
I always tell my patients, family, and friends that no one will advocate for you harder than you will. No one knows you better than you. So as a young woman, your BEST defense lies in self breast exam. The key is KNOW WHAT YOUR NORMAL IS!! General rules for self-exams are to look and feel. First, look at yourself in the mirror both with your hands on your hips and above your head (you are looking for any skin changes like dimpling or nipple retraction). Then, feel your breast with the flat portion of your first 3 fingers. You need to feel superficially, mid depth and deep into the breast tissue. Never pinch tissue together. This will cause you to feel things that don’t really exist. There is a diagram below that can help detail this process further. Personally, I always performed my self exams in the shower. I would wash my breasts with soapy hands because I could feel everything better. Most literature recommends that self breast exams are performed on a monthly basis, but I did one twice monthly. If you perform your breast exam regularly you will know if there is a change. I’m evidence of this. A Self breast exam is how I found out that at 31 years old, I had breast cancer.
I Have Breast Cancer
On Thursday May 26, 2016, I woke up early and jumped in the shower. As a mother of a 2 year old little boy, I’m always running late no matter what time I get up. I went through the routine and when I began to wash my right breast I felt a change. It didn’t feel like the “lump” that everyone tells you. It just felt different. If I was not someone who practices what they preach, I would have missed it. I thought about it while I got dressed, on the drive to work and during the first part of my day. That spot… I went to the bathroom and felt again, my fingers immediately found it again. It was real.
I work in a place where the sisterhood is amazing and I didn’t have to wait. I’m lucky enough to be friends with one of the breast radiologists (Dr. Dana Bonaminio). I mentioned the area to Dr. B and she sprang into action, immediately checking the area herself. She made a phone call to a well respected breast surgeon, got an order for imaging and got started. The imaging yielded 3 areas in the right breast that looked suspicious. I’ve often been in with Dr. B when she made biopsy recommendations to patients, but when she told me that she wanted to biopsy the areas in MY breast there was an understanding of what it was. I knew what cancer looked like. I was prepared. We completed the biopsy. All 3 places. And now it was my turn to wait.
Normally it takes somewhere between 48-72 hours for results to come back. My biopsy was completed on the Thursday before Memorial Day weekend. Dr. B was checking for results less than 24 hours after my procedure and requested a rush. There was no way that we were waiting for the weekend; that would be torture. Hours passed… Around 3:30 p.m. on Friday, Dr. B called the pathology department again. It was in the moment where my normally chipper friend said, “I understand, thank you” and hung up the phone, that I knew. All she had to do was look at me and I felt my world crumble around me. I melted into a tearful heap onto the floor. Dr. B picked me up off the floor walked me to a private room and we cried an ugly cry together. All 3 areas were Invasive Mammary Carcinoma. And just like that, on May 27, 2016, I was diagnosed with breast cancer.
The hardest part of the initial shock was telling my family. As a wife, mother and daughter you immediately think of the ones you love, so I told them they had 15 minutes to cry and be emotional and then they had to be ready to fight with me. I always tried to keep positive and for the most part, I succeeded. I never let myself think that I could die. I whole-heartedly believe that mindset is half the battle. If you arm yourself with a positive attitude and try not let to let your mind and spirit go into a dark place, you are a much stronger warrior.
The next business day I was sitting in the breast surgeon’s office and formulating a plan. The 3 areas made it impossible to just have the cancer removed; I already knew I wanted to have a bilateral mastectomy. Our next step was to complete genetic testing. If I was predisposed to breast cancer then I would probably be predisposed to another cancer as well. Thankfully I did not carry any of the gene mutations. Next was the breast MRI looking for any lymph node involvement, meaning the cancer was spreading. Dr. B went over the MRI results with a fine tooth comb. No lymph nodes were involved which was fantastic news, but the MRI showed 7 more tumors. That meant that my original 3 had turned into 10, confirming the bilateral mastectomy was necessary.
Because my particular type of cancer had strong estrogen and progesterone hormone receptors, I had to meet with a gynecological oncologist. Not only was the cancer going to take my breasts, I needed a complete hysterectomy as well. I also needed to meet with a plastic surgeon for reconstruction surgery, some of which could be done during the mastectomy process.
Less than 1 month after my diagnosis I was headed to surgery. The morning of surgery I was anxious, terrified, and ready to get it over with. I woke up 6 hours later in excruciating pain, without natural breasts and with 4 new sewn in drains that I would keep for two weeks to prevent any fluid build up. Oh the drains… they are the worst part. You have to baby them and safety pin them to your shirt. You have to empty them twice a day and pray they don’t snag on something. Then once they’ve served their purpose they are literally ripped out of your body in one searing painful moment. The day the last one was removed, I celebrated with Mexican food and a huge beer! It was the best feeling to have them out and not have to deal with them again.
The removed tumors underwent testing. There are literally parts of my breast all over the United States. The final pathology report showed 10 tiny breast cancer tumors, all located within the same region of my breast. For good measure my breast surgeon removed a small clump of lymph nodes to make sure there wasn’t any spreading. Those came back clean. The cancer was completely confined to my breast. Pieces were sent out to a lab for Oncotype testing, a test to see if the cancer had the potential to recur.
In the meantime I met with 2 different medical oncologists. The first one was set on giving me aggressive chemotherapy due only to my age. Young women with breast cancer are still uncharted territory. There are more and more of us every year, but we are still the minority.The type of chemo she recommended had side effects I wasn’t comfortable with; especially without the Oncotype testing complete or knowing the biology of the cancer. I felt as if the conversation with this initial oncologist sucked all the hope out of my life. It felt like she was telling me to pack it up and get my affairs in order because I was going to die. I’m thankful for my support system, because they snapped me out of it. I was encouraged by my husband, my parents, and of course, Dr. B, to get another opinion.
It was from there that I met Dr. Carl Willis, who restored hope to my world. Not only is he a fantastic doctor that makes his recommendations based on science and cutting edge studies, but he is a man of faith. On our first meeting he recognized the despair I was feeling after the first oncologist’s recommendations. From the time I entered his office, I was at home. His staff were friendly and warm and he made me feel like I was going to be ok and that I still had options. When the Oncotype test finally came back, I was still in gray area, chemotherapy may or may not benefit me. So he ordered another test called Mammaprint and scheduled my hysterectomy. Removal of my reproductive organs was going to be the best defense against recurrence regardless of the test results. Then finally, I received a call from Dr. Willis and his nurse practitioner giving me the good news. The second test that he’d ordered showed a low likelihood of recurrence. I wouldn’t need chemo after all. With my treatment of the bilateral mastectomy, the complete hysterectomy, and taking Tamoxifen for 10 years, my risk of recurrence is very low.
Healing & Hope
If you surround yourself with a medical team that you trust to take your concerns seriously, then you will be ok. TRUST is key. If you don’t feel like you can have an informed conversation with your medical team or even question their recommendations, then you need a new team. Doctors are humans too, and second opinions are ALWAYS allowed. Again, NO ONE will advocate for you harder than you will.
I hope that none of you ever get faced with this diagnosis, but the reality is some of you will. If it happens to you, get educated quickly! Be an active part of your treatment. If you google, stay away from WebMD and message boards. Ask your doctors for reputable websites and articles. Push for testing. Treatments are changing rapidly, your doctors are most likely informed, but if not, take them clinical trial papers. The best question you can ever ask your doctor is, “why?”
The hardest part of revisiting this journey for this post has been my feelings. It’s still raw, all of it. I am truly lucky to have so much support. My husband has been my rock. We have been married just shy of 5 years, and when we should have been planning the future of our family we were faced with this diagnosis. Never once has he wavered or even flinched. Mastectomy, good…. Complete hysterectomy, fine. As long as it has kept me alive and well, he’s been fully supportive. There have been not-so-glamorous times when we were changing drains or when I had a meltdown in the mirror looking at my new body; he’s loved me through them all. Even though it might sound small, he once said, “Robin, I didn’t marry you for your breasts”. That statement was a game changer for me. I was worried if my husband would ever find me attractive again. The things that I thought were sexy about myself, and the things that I assumed were most sexy about me to him… weren’t. This man truly loved me, even with all my scars (and I have plenty). I can’t describe how vulnerable you feel as a woman with all your “womanhood” taken away. It’s hard. There are tears and screams and so much anger. But my husband… he made it not so bad. He reminded me why he loved me. Marriage, intimacy, and love have new, deeper meanings now. And honestly, I’m more in love with him because of it.
My parents have been there for all of it too. My mom moved in with us for the first 2 weeks after my mastectomy. Even at 31, I needed my mama. She cooked and cleaned, she made sure my son was bathed and story time happened every night. She changed drains and took me for every appointment in those first 2 weeks…. And there were so many! She was my lifeline. My dad visited every day. He checked on me and just stopped by to chat. I can’t stress how important it is to talk about ANYTHING other than breast cancer. I learned an important lesson after surgery…. No matter how old you are, you will always be your parent’s baby.
The hardest part, always the hardest part, was explaining “Mommy’s boo boo” to my son. He is 2. He is my world, my heart, and my very favorite person in the world. How do you explain why mommy can’t play, can’t pick him up and take him to bed? It was harder on him than I ever thought imaginable. He gave me “Dr. Gunnar” check ups and when I finally got released and picked him up for the first time in nearly 3 months, I’ve never seen a smile that big. It lit my world. I swear I acted like that child didn’t have legs.
It’s been hard. If I didn’t tell you that I’d be lying. This has been the worst thing I’ve ever experienced. But it’s also provided more perspective than I ever could imagine. I no longer care about overflowing laundry and I will take a day at the playground over dishes any day. The perfectly kept house matters so much less now. All I really want to do is spend time with my people, the rest can wait.
I can’t speak highly enough about my team. These people are the reason why I’m alive and I am forever indebted to them. All of them have entertained my crazy and even talked me off the neurotic ledge a few times. I love them all.
Dr. Dana Bonaminio, breast radiologist and my friend. Dr. Laura Lawson, breast oncology surgeon. Dr. Alpa Nick, gynecologic oncologist. Dr. Brian Tierney, plastic surgeon. And of course, Dr. Carl Willis, medical oncologist. Dr. David Magaram (breast radiologist) and Dr. Melinda Sava (breast radiologist). Not only are they wonderful doctors, but they are great people. They instilled hope for me. They all (at one point or another during this journey) made me believe everything was going to be ok.
A few other folks… Lisa (Dr. Lawson’s nurse), Connie (Dr. Willis’s nurse practitioner), Ashley (Dr. Nick’s nurse practitioner), Peggy and Jenny at Dr. Willis’s office, Shauna from Dr. Nick’s office, Lisa, Brittany, and Betsy (Dr Tierney’s staff), and the amazing OR staff and nurse techs from my overnight stay at Saint Thomas Midtown Hospital. I wish I knew everyone’s name; I wish I could go find them and tell them that they made a difference to me.
I know I talked about the amazing support that I had from my family, but what was pretty amazing was the rallying done by my work family. I have some incredible coworkers and supervisors. Never once was I made to feel like I had to hurry up and get back to work; it was made perfectly clear by my supervisors (Tammy Carney and Beth O’Malley) that my main priority was going to be me.
I am humbled by the outpouring of support, prayers and love that I have received. I was shown first hand, NO ONE FIGHTS ALONE.
What an awesome example of strength and perseverance! When I asked Robin to write this and let me post it, she told me she wasn’t a very good writer, but wanted to make young women understand it can happen to them too. I’d say she did a great job of sharing her story and empowering all of us to remember our monthly exams! Let Robin know in the comments how her story resonated with you.
Robin asked that if you enjoyed her story, that you please consider donating to St. Thomas Health. The funding goes 100% towards paying for the screening and treatment of uninsured and under insured women. It allows every woman, no matter her age or financial situation to receive the very best care in screening and treatment.
Saint Thomas Health Foundation will direct 100% of all donated funds to care for needy patients served by Saint Thomas Health’s Centers for Breast Health. Saint Thomas Health is Middle Tennessee’s faith-based, not-for-profit health care system united as one healing community. Saint Thomas Health is focused on transforming the healthcare experience and helping people live healthier lives, with special attention to those who are struggling most. Saint Thomas Health is a member of Ascension, the largest non-profit health system in the U.S. and the world’s largest Catholic health system. For more information, visit www.STHealth.com