Guest Post: Gina LaPapa
I sat in the glider, surrounded by the clouds painted on the walls as I nursed my toddler to sleep for his nap. He squirmed trying to find space on my expanding lap. My milk was drying up for the time being, in preparation for the birth of my daughter who was due in another month. He wasn’t getting much milk, but seemed to be content with comfort nursing. When he drifted off to sleep, his lips pursed and we snuggled for a moment on that cold November afternoon. Upon standing, I felt a twinge of pain in my right nipple. I noted he didn’t nurse on that side so it couldn’t have been anything he might have done while nursing. Besides, the only pain I had ever experienced breastfeeding was at the newborn stage when the baby was learning to latch.
After I set him in his crib, I slipped in to my bathroom to examine my nipple. A slight crack with a tiny bit of blood appeared out of nowhere.
IS NO ONE LISTENING?
At my next prenatal visit a few days later, I mentioned the blood. My anxiety was high thinking about my newborn daughter nursing on a breast with an open wound. Oh the pain! She shrugged it off and said we had about a month before delivery, so there was plenty of time for it to get better.
The first four months of my daughter’s life was a whirlwind filled with illness and exhaustion. The wound never healed. I contracted mastitis (a breast infection) four times in the four months on that same breast after her birth in January of 2003.
I visited a breast specialist in late April of that year. She walked in and asked why I was there as I adjusted the flimsy paper half gown they provided. I cut to the chase to ask her if she could test me for breast cancer. In the back of my head, I suspected this wound was abnormal. A simple, small laceration that appeared out of nowhere, would have healed by now. I explained the wound, the bleeding, the mastitis, and the relentless pain. She interrupted me and literally waved her hand as a dismissal and asked, “How old are you?”
“Oh, honey, you’re way too young for breast cancer.” She wasn’t listening. I needed to find someone who would at least hear me out. I took off the paper gown and dressed as she continued to talk. I walked out feeling defeated and frustrated.
A month later, I saw another specialist . The doctor would not perform the skin biopsy I requested, stating she thought it was rather invasive. She suggested I stop pumping. I agreed to slowly wean off the pump.
A SHORT REPRIEVE
At my daughter’s next check up with our doctor, I caught him up on what had happened over the previous months. He suggested I might have Candida. Upon researching it, I agreed that might be it, and immediately stopped eating sugar, dairy, and gluten. I was willing to do anything to stop the relentless pain. I simultaneously started taking other supplements and almost weaned off the pump. For the first time in 9 months, it appeared my nipple was looking better.
At the follow up appointment with the breast specialist in August, I told her about the Candida diagnosis and my increased energy. She agreed Candida was a plausible cause of this lesion, but told me if it didn’t completely heal, to call a dermatologist. On top of the Candida possibility, she said it could be a dermatitis issue or another type of skin infection.
During August and September, I was so hopeful my nipple was healing. The unbearable pain I’d had up until this point plateaued. Unfortunately, in October, my nipple cracked and started to bleed all over again, and the pain came back with a vengeance.
I called my long-term dermatologist to be seen, and the first available appointment was January 2nd, and with the holidays and end of the year coming up, they told me to not expect a cancellation.
The time between October and January was excruciatingly painful. The small cut I had come to know very well over the past year, grew. It scabbed over. In normal circumstances, the purpose of a scab is to cover the wound to allow for healing underneath.
This was no ordinary scab. It would soften in the shower and then fall off, leaving the wound on the nipple vulnerable and very painful. It was also extremely itchy. I tried antihistamines, topical ointments, and even numbed it with ice in hope of relief. Pure lanolin would dull the itch, but only temporarily. I kept it covered most of the time due to the oozing of blood and now a discharge of pus. I resorted to using nipple shields (commonly used with breastfeeding) right after a shower because of the sensitivity after the scab would fall off. Once it scabbed over again, the pain was less intense. I learned to avoid getting it wet too often.
The nipple also flattened around this time and inverted.
My dermatologist prescribed a steroid cream to spread on my nipple twice a day for two weeks in hopes that if it were a skin infection of some sort, it would clear it up. Two weeks later, it was clear, the cream wasn’t helping. As I sat in his office, he opted to perform a punch biopsy in order to test the lesion on my nipple. Then, I waited two more weeks for the follow-up appointment on February 2, 2004.
The day was cold, overcast, and windy with slight flurries whipping around that Chicago day. I set my appointment for the afternoon so my babes could sleep, making it easier on my Dad who was looking after the children for me.
The drive to the dermatologist’s office was filled with trepidation. I sat in the waiting room alone and suddenly wished my husband would have taken the afternoon off to join me. The nurse ushered me to the same room I occupied two weeks prior. A few moments later, the doctor knocked then entered the room. As soon as I glanced at the doctor, I knew it couldn’t be good news. He didn’t waste any time.
“Gina, do you know what Paget’s Disease is?”
I shook my head.
“It’s breast cancer. More specifically, it’s breast cancer of the nipple. You will need to see a breast surgeon. The sooner the better. I don’t want to scare you, but Paget’s can be an aggressive cancer. Tests need to be done to determine your stage and treatment plan so it’s important for you to schedule something as soon as possible. I can give you a referral to someone I work with at the downtown location if you’d like.”
For half a second, relief flooded me. Finally an answer to the over year-long, painful saga! Moments later, my heart sank as these thoughts spiraled downward in my head. Breast cancer. Fourteen months I’ve been walking around with this. It had to have spread. Oh dear Lord! How could it not? It’s been so long. I’m 26, and my babies are only two and one. Oh my babies! No. No. Not happening. They won’t remember me. This news did not fit the narrative I had conceived for my life. This is not how it was supposed to go. Denial hit pretty quickly.
Breast cancer was not on my agenda. Is it on anyone’s? I’ve always been a planner. I was a type A personality for sure, just like my dad. I knew I wasn’t in control of everything in my life, but I often felt I could control the choices and circumstances around me. How naive I was! This news simply couldn’t be true because I didn’t plan for it. I knew I had to reconcile a few things in my mind pretty quickly in order to face this head on. For the first time in my life, I truly felt this was beyond me. I couldn’t do this on my own. I could not will the cancer to disappear, but I could learn a new way.
When I got home, survival mode kicked in.
The warrior awakened and the motivation to live, pumped through my veins fueled by fear. Within minutes, I spoke to several people who offered leads on doctors for me to consult with.
I interviewed two doctors that same week and asked about their experiences with Paget’s Disease, their success stories, and the prognosis I could expect. Both doctors were at the top of their field in major teaching hospitals downtown. Both treated about 4-5 cases of Paget’s a year, since this cancer makes up a little less than 1% of all breast cancer diagnoses.
The mastectomy, coupled with immediate reconstruction (a temporary expander in preparation for a silicone implant) was scheduled as soon as possible since my symptoms had already been present for over a year by this point. I couldn’t wait to get the cancer off of me. Every day that passed before the surgery date made me more anxious.
The time between the diagnosis and the scheduled surgery were desperately lonely. I needed to connect. I knew no one with breast cancer, let alone Paget’s Disease. One of the surgeons had asked if her medical students could observe our appointment. I agreed. It was a teaching hospital and I was hopeful their experience would better prepare them to help someone else with Paget’s Disease in the future. She addressed her twenty students about my case, and her words echoed in my mind.
“Get a good look at this. Paget’s usually hits women in their 60’s or later. You might not see another case of someone so young, and lactating on top of it, in your lifetime.”
Even if I had been able to connect with someone with Paget’s Disease, they would likely have been women decades older than me - not women who were raising small babies during this diagnosis and treatment. I felt alone. Facebook groups and social media didn’t exist at that time. I knew of one organization with a peer network of volunteers dedicated to supporting new cancer patients with a similar diagnosis. I called. They couldn’t match me with anyone.
DECISION, FATIGUE, AND A MIRACLE
Three weeks later on February 24, 2004 I underwent surgery. In between, I endured many tests. I weathered a mammogram on both sides along with an MRI, chest x-ray, and blood work. My status as a still-lactating mother complicated the protocols for each test, but overall, I was thankful for the caution of the doctors.
Four days after my mastectomy, I received the best news. My pathology report was clear - no lymph node involvement! All margins were clean. Given the length of time I had experienced symptoms, my doctors rushed the slides to one of the best hospitals in the nation for a second opinion to confirm their conclusions. They discovered some DCIS (ductal carcinoma in situ), a non-invasive cancer contained in the milk ducts, but with all things considered, it was nothing short of a miracle the cancer did not spread, since it was also noted I had a very aggressive cancer. No radiation or chemo prescribed! Thank you Lord!
The road that led to my diagnosis of Paget’s Disease was unusual considering my age and other risk factors that are typically associated with this condition. It was long and exhausting. The symptoms, almost unbearable at times, would have nearly crushed me if I weren’t so stubborn.
The first year of my daughter’s life was chaotic and not how I envisioned parenting two small children. Every day took enormous effort as I fought for answers and wellness. I remember taking “snapshots” in my head of moments in between my cancer diagnosis and the surgery. I didn’t want to forget a thing. Every free moment in between doctor appointments, I spent with my children. I often fought back tears as we sang and danced in the living room. They were joyfully oblivious what the future could hold if I wasn’t able to beat this diagnosis. Their joy kept me smiling in between the tears I let flow almost every evening as I rocked and nursed my youngest to bed. I tried not to think about the year-long misdiagnosis and what prognosis I might face in the future. Phrases lingered in my memory regarding the statistics of Paget’s, how aggressive the disease could be, and the fact cancer didn’t care if I lived to see my babies grow.
The days and weeks following surgery were grueling in many ways. I learned to accept this new normal and I eventually regained use of my arm. Life slowed down in a good way, but it still took me a while to get used to it.
Once I knew the cancer didn’t spread, relief flooded me. It wasn’t until the adrenaline of survival mode slowed down weeks after the surgery, I realized how much I delayed my grief and pure frustration.
Many doctors failed me along the way including my ob/gyn who dropped me as a patient instead of helping me investigate the root of the problem when symptoms first began.
The first breast specialist I saw also failed me. She made the assumption I was too young for breast cancer. Again, her beliefs and biases delayed my diagnosis.
I grieved. I grieved for the time taken from me.. The anger ebbed and flowed in the months following my surgery. I recognized the despair and emptiness could consume me or I could step outside myself and use that energy to encourage others. I choose the latter.
To my fellow cancer warriors:
You are not alone.
No matter what your diagnosis or your prognosis, know that others have walked this well worn path before you. Reach out, take the hand of warriors and survivors around you. We will guide you, hold you up, cheer you on, or simply walk in silence alongside you if that is what you need. You are strong. Nothing can destroy your soul unless you allow it to. Our stories are all different, but we are stronger together. Find a community who will support you. Keep going. You are a warrior.
Paget’s has helped me to remember to pause to take more mental snapshots of memories with my children. I still dance with them in the living room, this time with tears of joy -- not fear. Cancer changed me for the better. It made me stronger, more confident in my own skin, and continues to shape my mindset. I am grateful. The journey taught me how to prevail in this cancer fight with grit. I am an overcomer.
Gina LaPapa is a faith warrior and encourager. She writes at www.BeingBrave.faith where she encourages her readers to grow their faith through everyday brave moments. One of her greatest passions is sharing the hope of Christ for the weary soul. For the past 15 years, as a breast cancer overcomer (Paget’s Disease), she is a speaker, writer, and mentor for women who face their own trials. You can connect with her at www.BeingBrave.faith, on IG @ginabeingbrave or on FB @ginalapapawriter. She is mama (step, bio and adoptive) to five children. She and her husband live in Chicagoland with their children.