Mystery Neck Pain - Ivy | Stage 4 Lung Cancer
Posted: Tue Feb 24, 2026 9:16 am
I don’t know if shocked is the right word, but I had always known there was a possibility it could be cancer. Still, when I heard the news, I was very, very shaken. It felt like a nightmare coming true, and I almost didn’t know what to do next.
Around the middle of 2013, I started having issues with my right elbow. I couldn’t fully straighten it, and it hurt a little. The left side of my neck was also bothering me. At first, I didn’t think much of it, but it didn’t go away. I saw my primary care physician, who looked at me and said, “You’re 47. How are you using your computer? Holding your iPad?” He thought it was an overuse injury. That made sense to me, and I agreed.
They called it tennis elbow, but it wasn’t responding to treatment. My neck oddly started to feel better, but my elbow didn’t. I eventually saw an orthopedist who specialized from the wrist to the shoulder. He ordered an MRI and found a mass in the joint that looked like it had eaten away a bit of the bone. He wasn’t sure what it was, so he sent me to an orthopedic oncologist.
Seeing an oncologist was terrifying. The word itself is scary. I brought all my reports. He looked at me and said that if I had presented differently, he would think it was metastasis from somewhere else. But he was 90–95% sure it was a benign giant cell tumor. He said he’d do a biopsy, no rush, and if it was benign, they’d remove it.
But it wasn’t benign.
In the months leading up to that, I had been diligently following every recommendation — physical therapy, cortisone shots, follow-ups — and nothing was improving. I was frustrated. Part of me wondered if I should stop pushing for answers. My husband even said maybe this was just my “thing,” like his arthritic knee. But it kept getting worse. Lifting my hands to fix my hair hurt. At 47, that didn’t seem right. So I kept going. It took about six months to get the answer.
The biopsy came back malignant. Adenocarcinoma. Since that type doesn’t originate in bone, they knew it had come from somewhere else. I asked where carcinomas usually come from, and he said the lungs or the breast. I was convinced it must be breast cancer. I didn’t realize then what I know now — anyone with lungs can get lung cancer. I didn’t think I had any risk factors.
Even though the oncologist had initially said he was almost certain it was benign, I was nervous waiting for the biopsy results. It took a couple of weeks. When he called and asked me to come into the office, I knew that wasn’t good news. I convinced him to tell me over the phone. That’s when he told me it was malignant adenocarcinoma. My stomach dropped. I was shaken to my core.
Within a week, I had a PET scan. Suddenly I was entering a new world — PET scans, contrast injections, CT scans, brain MRIs. It’s overwhelming to learn that language at the same time you’re terrified. Fortunately, I got my PET scan results the same day at the hospital in downtown Chicago. My husband and I had lunch while we waited.
The scan showed a nearly three-centimeter mass in my upper right lung, smaller nodules, and activity in my elbow and neck. There were also spots in other bones, including my pelvis. It was metastatic lung cancer. I barely remember those days — they’re a blur of sadness and tears. I tried to hide how devastated I was from my kids.
Once they confirmed lung cancer, my hospital automatically sent my biopsy for molecular testing. This was 2013, so they tested for EGFR, ALK, and KRAS. Before I even met my thoracic oncologist, her nurse called and asked if anyone had talked to me about molecular testing. She told me that if I had an EGFR mutation, that was actually good news because there were targeted oral medications for it. That conversation gave me a small ray of hope and completely changed what I thought treatment would look like. I had imagined chemotherapy, hair loss, and severe sickness. I had never heard of targeted therapy.
When I met Dr. Patel, she ordered additional tests, including a brain MRI. That’s when we discovered small brain metastases in addition to the bone involvement. Because of that, she had me consult with a neurosurgeon and a radiation oncologist before starting treatment. They discussed surgery, radiation, and the possibility of whole-brain radiation if more lesions appeared. By the end of that day, I was beyond terrified. But I was grateful all the doctors collaborated.
Dr. Patel recommended starting an EGFR-targeted therapy, explaining it could shrink or even eliminate tumors in the lungs, brain, and spine. There was concern about my cervical spine potentially collapsing, which is why I wore a neck brace for three months and had regular neurosurgical follow-ups. I left the hospital that day with a prescription for targeted therapy and the brace.
From the first conversation, I trusted Dr. Patel. She listened, answered my questions, and treated me like a person. There wasn’t time for a second opinion given the urgency with my spine, so I leaned into that trust and let her team coordinate everything.
I experienced common side effects — rash, diarrhea, dry skin, brittle nails — but my oncologist and nurse prepared me well. I had mouthwash for sores, creams and antibiotics for rashes. The side effects were manageable, and over time I learned how to handle them.
The results were remarkable. The bone in my neck regrew, and I didn’t need surgery. My brain metastases disappeared. Lung nodules disappeared, and my main tumor shrank significantly. Those results lasted close to three years, and I remained on that therapy for over four years.
Later, when there was possible progression in my lung — though it was never entirely clear — my oncologist discussed radiating the primary tumor. The case went to tumor board, and they determined I was a candidate for surgery. Nearly a year ago, I had my upper right lobe removed. After surgery, I had no evidence of disease. A year later, I still have no evidence of disease.
One of the most important lessons I’ve learned is to care for your mental health as much as your physical health. A cancer diagnosis is a massive stressor. I could not have lived with lung cancer for over seven years without therapy and antidepressants. Taking care of my mental health has allowed me not just to survive, but to live — to be present for my husband, my kids, my friends, and my 89-year-old mom.
The biggest message I can share is hope. In just seven years, lung cancer treatment has changed dramatically. When I was diagnosed, immunotherapy was barely an option. Many mutations hadn’t even been discovered. A decade earlier, most patients received the same chemotherapy. Now there are targeted therapies, immunotherapies, surgeries, radiation strategies — patients are living longer and better. There is tremendous progress and tremendous potential for even more.
Around the middle of 2013, I started having issues with my right elbow. I couldn’t fully straighten it, and it hurt a little. The left side of my neck was also bothering me. At first, I didn’t think much of it, but it didn’t go away. I saw my primary care physician, who looked at me and said, “You’re 47. How are you using your computer? Holding your iPad?” He thought it was an overuse injury. That made sense to me, and I agreed.
They called it tennis elbow, but it wasn’t responding to treatment. My neck oddly started to feel better, but my elbow didn’t. I eventually saw an orthopedist who specialized from the wrist to the shoulder. He ordered an MRI and found a mass in the joint that looked like it had eaten away a bit of the bone. He wasn’t sure what it was, so he sent me to an orthopedic oncologist.
Seeing an oncologist was terrifying. The word itself is scary. I brought all my reports. He looked at me and said that if I had presented differently, he would think it was metastasis from somewhere else. But he was 90–95% sure it was a benign giant cell tumor. He said he’d do a biopsy, no rush, and if it was benign, they’d remove it.
But it wasn’t benign.
In the months leading up to that, I had been diligently following every recommendation — physical therapy, cortisone shots, follow-ups — and nothing was improving. I was frustrated. Part of me wondered if I should stop pushing for answers. My husband even said maybe this was just my “thing,” like his arthritic knee. But it kept getting worse. Lifting my hands to fix my hair hurt. At 47, that didn’t seem right. So I kept going. It took about six months to get the answer.
The biopsy came back malignant. Adenocarcinoma. Since that type doesn’t originate in bone, they knew it had come from somewhere else. I asked where carcinomas usually come from, and he said the lungs or the breast. I was convinced it must be breast cancer. I didn’t realize then what I know now — anyone with lungs can get lung cancer. I didn’t think I had any risk factors.
Even though the oncologist had initially said he was almost certain it was benign, I was nervous waiting for the biopsy results. It took a couple of weeks. When he called and asked me to come into the office, I knew that wasn’t good news. I convinced him to tell me over the phone. That’s when he told me it was malignant adenocarcinoma. My stomach dropped. I was shaken to my core.
Within a week, I had a PET scan. Suddenly I was entering a new world — PET scans, contrast injections, CT scans, brain MRIs. It’s overwhelming to learn that language at the same time you’re terrified. Fortunately, I got my PET scan results the same day at the hospital in downtown Chicago. My husband and I had lunch while we waited.
The scan showed a nearly three-centimeter mass in my upper right lung, smaller nodules, and activity in my elbow and neck. There were also spots in other bones, including my pelvis. It was metastatic lung cancer. I barely remember those days — they’re a blur of sadness and tears. I tried to hide how devastated I was from my kids.
Once they confirmed lung cancer, my hospital automatically sent my biopsy for molecular testing. This was 2013, so they tested for EGFR, ALK, and KRAS. Before I even met my thoracic oncologist, her nurse called and asked if anyone had talked to me about molecular testing. She told me that if I had an EGFR mutation, that was actually good news because there were targeted oral medications for it. That conversation gave me a small ray of hope and completely changed what I thought treatment would look like. I had imagined chemotherapy, hair loss, and severe sickness. I had never heard of targeted therapy.
When I met Dr. Patel, she ordered additional tests, including a brain MRI. That’s when we discovered small brain metastases in addition to the bone involvement. Because of that, she had me consult with a neurosurgeon and a radiation oncologist before starting treatment. They discussed surgery, radiation, and the possibility of whole-brain radiation if more lesions appeared. By the end of that day, I was beyond terrified. But I was grateful all the doctors collaborated.
Dr. Patel recommended starting an EGFR-targeted therapy, explaining it could shrink or even eliminate tumors in the lungs, brain, and spine. There was concern about my cervical spine potentially collapsing, which is why I wore a neck brace for three months and had regular neurosurgical follow-ups. I left the hospital that day with a prescription for targeted therapy and the brace.
From the first conversation, I trusted Dr. Patel. She listened, answered my questions, and treated me like a person. There wasn’t time for a second opinion given the urgency with my spine, so I leaned into that trust and let her team coordinate everything.
I experienced common side effects — rash, diarrhea, dry skin, brittle nails — but my oncologist and nurse prepared me well. I had mouthwash for sores, creams and antibiotics for rashes. The side effects were manageable, and over time I learned how to handle them.
The results were remarkable. The bone in my neck regrew, and I didn’t need surgery. My brain metastases disappeared. Lung nodules disappeared, and my main tumor shrank significantly. Those results lasted close to three years, and I remained on that therapy for over four years.
Later, when there was possible progression in my lung — though it was never entirely clear — my oncologist discussed radiating the primary tumor. The case went to tumor board, and they determined I was a candidate for surgery. Nearly a year ago, I had my upper right lobe removed. After surgery, I had no evidence of disease. A year later, I still have no evidence of disease.
One of the most important lessons I’ve learned is to care for your mental health as much as your physical health. A cancer diagnosis is a massive stressor. I could not have lived with lung cancer for over seven years without therapy and antidepressants. Taking care of my mental health has allowed me not just to survive, but to live — to be present for my husband, my kids, my friends, and my 89-year-old mom.
The biggest message I can share is hope. In just seven years, lung cancer treatment has changed dramatically. When I was diagnosed, immunotherapy was barely an option. Many mutations hadn’t even been discovered. A decade earlier, most patients received the same chemotherapy. Now there are targeted therapies, immunotherapies, surgeries, radiation strategies — patients are living longer and better. There is tremendous progress and tremendous potential for even more.