Being one of 240,000 are great odds if you’re playing the billion-dollar Powerball, but not when those odds are for being diagnosed with breast cancer.

According to the CDC, close to 240,000 cases of breast cancer are diagnosed in women and about 2,100 in men each year, and Courtney Shihabuddin DNP, APRN-CNP, was one of those women in 2020.

Shihabuddin was diagnosed with breast cancer on February 13, 2020. Since her diagnosis, she’s become an educator and advocate for others, creating and founding The Pink Warrior to advocate for young women with breast cancer by sharing her personal story and working with national breast cancer organizations.

Daily Nurse spoke with Shihabuddin about her deep passion for breast cancer advocacy and her unique perspective on survivorship. What follows is our interview, edited for length and clarity.

Talk about what you do in your role as a certified nurse practitioner.

I work primarily as an assistant clinical professor at The Ohio State University’s College of Nursing. I teach in the graduate nursing program and am the specialty track director for the Adult-Gerontology Primary Care NP program and the Adult-Gerontology Clinical Nurse Specialist Program. So, I help run those two programs and teach the Adult Gerontology Primary Care Nurse Practitioner Program. I practice clinically at the Columbus Free Clinic on Thursday evenings, which is a clinic that serves the uninsured and underinsured population of the Columbus, Ohio area, providing primary care services and specialty services, including gynecology, urology, neurology, and psychiatry. We recently founded a Rainbow Clinic as well that exclusively serves members of the LGBTQ population. And so while I’m there, I’m precepting my nurse practitioner students and first and fourth-year medical students. And it’s just been a great experience. I love working there. I’ve been there for four years and serve on their board. I’m the medical director of quality, and it’s a big part of my job, work, and daily life.

Talk about being diagnosed with breast cancer in February 2020.

I have to start a little bit before that. My mom is a three-time breast cancer survivor, three separate new-growth breast cancers, not recurrence. And my father’s sister has had breast cancer twice. And so they both had genetic testing, and they’re both negative for any genetic abnormality that could indicate a genetic propensity to breast cancer. But when I was 24, I found my first one. And so, knowing my family history, I didn’t mess around with that at all. I had just started nursing school at that point. I did nursing as a second career. And so I didn’t have the level of knowledge that I have now. I knew something was wrong and wanted to get it checked out. And so I did, and it was a benign fibroadenoma, a benign fibrous growth. It was followed for a couple of years, and then I relocated, and my OBGYN recommended that I enroll myself in a high-risk screening program offered at the medical center. So I went into that program, which did surveillance every six months, either with a mammogram or an MRI. I stayed in that program when I lived in Oklahoma. Then, in 2018, when we moved to Columbus, I transitioned into the program that we have here at the James (The James Cancer Hospital and Solove Research Institute), our cancer hospital. And I went every six months as scheduled in August 2019. I had a normal mammogram. Then, in February of 2020, I had a grossly abnormal MRI compared to previous imaging. And so they did an ultrasound and biopsy. So we did all of that. I was diagnosed on February 13, 2020, with invasive lobular carcinoma in my right breast. In my left breast, I was diagnosed with lobular carcinoma in situ (LCIS), which is a pre-cancerous finding. According to the MRI imaging, the lobular carcinoma in situ was made up of greater than 50% of the breast tissue on my left side, so my only surgical option for treatment was a double mastectomy, which I was planning on doing anyway because I didn’t want to have to go through cancer more than once. Seeing that two of my first-degree relatives had had to do it more than once, I knew I didn’t want that option. And then, of course, COVID happened and complicated things tremendously. On March 31, 2020, my surgical oncologist called me and told me that my mastectomy was canceled because it was considered an elective procedure. And I nearly about lost my mind. My oncologist also felt that that was not an adequate treatment plan. My surgeon wanted me to start tamoxifen because I had hormone-positive cancer, and said then we’ll revisit this when this COVID thing is over. My oncologist said, ‘Absolutely not you need surgery. Your entire treatment plan is based on testing that we want to do on your tissue. And without surgery, you don’t have your tissue.’ So she moved it up to the following Monday. And I had my double mastectomy. I was very lucky because of the high-risk screening program that I was in. It was caught quite early. My tumor was just over two centimeters but had not spread into any of my lymph nodes. And so I was stage 1B. My treatment plan was surgery and then hormone suppression for ten years with tamoxifen. So, I’m currently three years into that ten-year journey on hormone suppression. I follow up every six months with my oncologist and pray that I never have any recurrence. I’ve had eight surgeries in the last three years, which is never fun being a mom. My husband is also an emergency room physician, so that meant going through treatment during a pandemic with an ER physician husband who can’t take any time off to take care of you when I had a one-year-old and a five-year-old was quite an experience. But we got through it. They say whatever doesn’t kill you makes you stronger. Now, I work hard to teach my students and patients about the risks that young women can have with breast cancer, being that I was 35 when I was diagnosed. I know many other women under the age of 40, who I know personally or who I’ve read about or interacted with on the internet, who have also been diagnosed at a much younger age and have often had care delayed because they’re too young. Or that’s not what breast cancer feels like. Or it’s probably benign. And we’ll check it in six months or something to that effect. Much of my advocacy work has to talk about self-advocacy as a patient and knowing your own body and what your normal is so that if you find something abnormal, you go to your provider, insist on some imaging, and advocate for yourself. In my personal and professional opinion, it’s always better to over-order than miss a potentially lethal diagnosis.

You have a full plate professionally and at home with two kids, but you’ve been busy advocating for others since your diagnosis. Talk about The Pink Warrior and your work with other national breast cancer organizations.

In October 2022, I launched The Pink Warrior, a website where I share my story. I offer resources for other people who may be caregivers or patients themselves, working through treatment, or how to talk to your family and tell your children. I also offer many external resources to assist them wherever they are throughout their treatment. I also created a small shop. That was my goal as a young woman with breast cancer. There wasn’t much geared towards a younger woman with cancer. Everything you see on television or read in popular culture about breast cancer is really for postmenopausal women. And there wasn’t this place where I felt I belonged in the breast cancer narrative. So, I tried to create that and inject some levity into the gravity of a cancer diagnosis. So I have snarky cards, a candle for tits and giggles, and fun little things. I partner with an organization, and it changes every quarter. I donate 10% of the entire shop to that organization at the end of the quarter. So, for Q4, we’re partnering with the PSF Foundation, and they work to help people who cannot afford breast reconstruction find surgeons and then pay for their reconstruction because so much of treatment is what comes after so much.

Survivorship is that part that no one prepares you for. So many things happen in survivorship that are unaccounted for what I feel as a survivor and nurse practitioner. My oncologist certainly didn’t prepare me for hot flashes, menstrual abnormalities, intimacy with my husband, body image disorders, or any of the things that come with amputation of your breasts and multiple surgeries. And getting thrown into menopause at 35 and what that looks like. So that’s what I strive to do, to help normalize with the Pink Warrior. You have a place to go if you know somebody who has been diagnosed and you want to send them something that shows that you care that’s loosely related to breast cancer, but also to have conversations. People email or chat with me on Instagram in direct messages, constantly saying, ‘I’m so glad that I found your page, or thank you for sharing your story.’ Or ‘I was just diagnosed, and I feel like I’m drinking from a firehose,’ what questions should I ask? Even if I help one person, that’s so rewarding for me because I was completely lost. I had all of the medical knowledge, and I still felt like I was drinking from a firehose with a pandemic on top of it.

I was at an event with somebody who had their mastectomy two weeks ago, and they had just gotten their pathology results. And they had no idea what it meant and how to interpret it. They were told that they had ductal carcinoma. They showed me their path report, and they no longer had ductal carcinoma in situ; they had invasive ductal carcinoma, which spread to their lymph nodes, and no one had explained it to them. As a provider, I can’t imagine releasing a path report like that and not having a conversation with the patient but also not ensuring that by the time I hung up that phone, I knew my patient understood what that meant. Even if it wasn’t breast cancer and it was something else, I would want to make sure that my patient understood their diagnosis and give them time to ask questions. As a patient, you could ask all the questions at that moment and completely black out without recollection of that conversation. So, the benefit of the doubt to this person’s provider. So I sat down with her, and I explained what everything meant. I gave them my phone number and said if you have any questions or want me to come to an appointment with you, I’m happy to do that because that’s what advocacy is to me. It’s helping somebody else through their struggles in a way you can relate to.

Talk about nurse practitioners’ work in helping screen and treat women with breast cancer.

So, the program I teach in which I operate is primary care. Our goal as primary care providers is for prevention and screening. We should be counseling all of our patients over 40 that they should be getting annual mammograms, and we should be ordering those exams. We should be having conversations with our patients about their risks. And suppose they do have a family history. In that case, we should be screening them before age 40 and evaluating whether that be genetic testing, a screening, an ultrasound, or a referral into a high-risk program. That is our role. Their primary care is prevention, and we are there to help them stay in tune with their body, know their body, empower them, be aware of what they’re looking for, educate them, and help steer them in a path that is here towards the best possible outcome. And that means early detection.

Please share some insight about what women need to know or should be asking. 

Breast cancer, in general, can be abstract. You can tell somebody what they’re looking for. You can tell somebody what’s normal or what’s abnormal. But to me, a picture’s worth 1000 words. And it’s so much easier to give somebody a visual than to explain something, especially if your patient’s first language is not English. There could be some misunderstanding or lack of knowledge from your communication. There is a charitable organization called Know Your Lemons. And they have a free app that teaches you how to perform a breast self-exam. It shows you how to do it feeling from just under your collarbone down over your sternum, all of your breast tissue, and up into your armpit, and it tracks your cycles and helps you equate anything that you may find with where you are in your cycle. It reminds you to do your self-exam. And the most important thing I think about the app is that it visually shows you the 12 Signs of Breast Cancer on lemons.

So it shows you what it would look like if there were warmth or a red spot, or what it would look like if there was an inverted nipple, or dimpling, or thickening of the skin, or discharge from the nipple. It visually shows you what all these things would look like. But on lemons, that makes it much more real to a layperson or a medical person, but a picture is much easier to understand. Oh, my breast looks like that lemon. I should get that checked out. It also helps translate. When you’re feeling your breasts, what if you feel something hard, like a lemon seed that’s fixed in the flesh of the lemon and hard to move around? That’s something that you want to be concerned about and get evaluated. Those are usually benign findings if you feel something that’s soft, like a pea or a kidney bean. They’re typically movable within the tissue. They’re usually soft and not as concerning as something hard like a lemon seed. And that’s how I explained it to my patients: here’s what you’re looking for. And I can always see this lightbulb moment. When you accept that you’re looking for something that’s hard, fixed, and doesn’t move, they have no idea what that means. But if you tell them, it’s like when you slice into a lemon, and that seed is like you can’t get that seed out. And it’s hard. That’s what you’re looking for. That’s what we’re worried about. It’s seeing their understanding and knowing, okay, I’ve empowered this person, and they know what they’re looking for now. My job here, I’ve accomplished that education. And I know now that I can move on to my next patient and do the same thing, knowing that they’ll know when to come to me if they find something abnormal.

Is there anything else to add about breast cancer and the need for early detection?

We must recognize our BIPOC community because our Black women are at a much higher risk and have a 40% higher chance of mortality from breast cancer. And that’s not because they have more breast cancer. It’s because of various health disparities. They’re often diagnosed when their cancers are later. Their cancers are usually quite aggressive. And, whether that’s because they didn’t seek care, or because they sought care and weren’t believed, or they were too young, or whatever it was, there is a problem with that statistic. We need to be better as healthcare providers in trusting our patients so that when they say, ‘This doesn’t feel right,’ we are taking them at their word, doing our exam, and ordering the necessary imaging to ensure that if this patient is telling me that they felt a lump, that we’re examining that lump because 40% risk of higher mortality is just unacceptable.

The other thing is that 80% of women under 40 find their breast cancer. That’s a pretty significant number, and that’s because we are saying there’s not a great screening for young women. Our breasts are dense, and mammograms don’t catch much. And so if you’re not feeling your breasts, if you’re not checking yourself, if you don’t know what’s normal for you, how do you know what’s abnormal? So, feel your breasts. I tell people to feel them on the first. It’s easy to remember the first of every month. It’s the same time every month, so you’re traditionally in the same part of your cycle because you’ll be the first one to tell if there’s something different.

The post A Passion for Breast Cancer Advocacy and Unique Perspective on Survivorship: Meet The Pink Warrior  first appeared on Daily Nurse.