Mystery Neck Pain - Ivy | Stage 4 Lung Cancer | The Patient Story
Posted: Wed Apr 08, 2026 5:42 am
I don’t know if “shocked” is the right word, but I was very shaken by the news. I always knew there was a possibility it could be cancer, but when it actually happened, it felt like a nightmare coming true. I honestly didn’t know what to do next.
This started around the middle of 2013 when I began having issues with my right elbow. I couldn’t fully straighten it, and it hurt a bit. Around the same time, 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 went to my primary care physician, who suggested it was likely an overuse injury, possibly from computer or iPad use. I agreed with him because it seemed reasonable. They called it tennis elbow, but the treatment wasn’t helping. My neck actually improved, but my elbow continued to worsen.
Eventually, I saw an orthopedist who specialized in the wrist-to-shoulder area. He ordered an MRI of my elbow, which revealed a mass on the joint that had even started to erode a bit of bone. He wasn’t sure what it was, so he referred me to an orthopedic oncologist.
By the time I saw the oncologist, I was already terrified just hearing the word “oncologist.” He reviewed everything and said that if I looked unwell, he might suspect metastasis from somewhere else, but because I appeared healthy, he felt 90–95% sure it was a benign condition called a giant cell tumor. He recommended a biopsy.
I was frustrated at that point because I was doing everything right—physical therapy, cortisone shots, follow-ups—but nothing was improving. Part of me wondered if I should just accept it as a chronic issue, like my husband suggested when he compared it to his own knee problems. But something still didn’t feel right, because my elbow kept getting worse. I reached a point where even simple movements caused pain, and at 47, it didn’t seem normal. So I kept pushing for answers.
It took about six months before I finally got clarity. The biopsy results showed it was malignant adenocarcinoma. That immediately raised concern that the cancer had originated elsewhere in the body. The orthopedic oncologist said the most likely sources were the lungs or the breast. I initially assumed it was breast cancer.
While waiting for further results, I became increasingly anxious. Eventually, my oncologist called and asked me to come into the office, which I already knew was not a good sign. I convinced him to tell me over the phone. That’s when I learned it was malignant adenocarcinoma.
I remember my stomach dropping. I was extremely shaken and overwhelmed. Even though I had suspected cancer was possible, hearing it confirmed left me in shock and unable to process what to do next.
Shortly after, I had a PET scan. This marked the beginning of a completely new world—new terminology, scans, injections, and tests like CTs and brain MRIs. It was overwhelming, especially while being so emotionally vulnerable.
Fortunately, I got the PET scan results the same day. It showed a mass in my upper right lung, along with other small nodules. It also showed that the elbow lesion and areas in my neck and pelvis were involved. At that point, I was told I had metastatic lung cancer.
Everything after that felt surreal and blurry. I was crying a lot, trying to process the diagnosis while also trying to protect my children from the fear I was experiencing.
My hospital then sent my tumor for molecular testing. At the time, I didn’t fully understand what that meant, but I later received a call asking about it. I was told I had an EGFR mutation, which meant there were targeted oral medications available that could specifically treat it. This gave me my first sense of hope, because I had originally assumed treatment would mean traditional chemotherapy with hair loss and severe illness.
Before meeting my thoracic oncologist, I also learned I had brain lesions on an MRI. Because of this, I met with both a neurosurgeon and a radiation oncologist to discuss whether surgery or radiation should come first. There was concern about possible spinal instability as well.
It was an overwhelming day, but I’m very glad all of those specialists coordinated. Ultimately, my oncologist recommended starting targeted EGFR therapy, which could shrink or eliminate tumors, including those in the brain and spine. I left that day with a prescription for targeted therapy and a neck brace, which I had to wear for three months due to spinal concerns.
I began treatment and experienced common side effects like rash, diarrhea, dry skin, and nail changes. However, I was well prepared for these and supported closely by my oncology team, which helped me manage them effectively.
Over time, the results were remarkable. My brain metastases disappeared, the bone involvement improved significantly, and the lung tumors shrank. After a few months, even my cervical spine showed major improvement, and surgery was no longer needed.
The treatment continued to work well for years. I remained stable for close to three years, and overall I’ve now been on targeted therapy for more than four years.
Later, when my oncologist changed hospitals, there was some uncertainty about possible progression, though nothing was ever clearly confirmed. Around six years after diagnosis, my care team began discussing more localized treatment options. Eventually, I was considered a candidate for surgery.
I chose surgery over radiation and had the upper right lobe of my lung removed. After that surgery, I was declared to have no evidence of disease. It has now been a year since then, and I still have no evidence of disease.
Through all of this, I’ve learned how important mental health is alongside physical health. Living with cancer is an enormous emotional burden, and support—therapy, medication, and emotional care—has been essential for me. It has allowed me not just to survive, but to continue living a full life with my family, friends, and loved ones without cancer defining everything.
The biggest message I can share is one of hope. Lung cancer treatment has changed dramatically in a relatively short time. New targeted therapies, genetic testing, and evolving treatment strategies have transformed outcomes. People are living longer and better lives than ever before, and there is still so much progress being made.
This started around the middle of 2013 when I began having issues with my right elbow. I couldn’t fully straighten it, and it hurt a bit. Around the same time, 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 went to my primary care physician, who suggested it was likely an overuse injury, possibly from computer or iPad use. I agreed with him because it seemed reasonable. They called it tennis elbow, but the treatment wasn’t helping. My neck actually improved, but my elbow continued to worsen.
Eventually, I saw an orthopedist who specialized in the wrist-to-shoulder area. He ordered an MRI of my elbow, which revealed a mass on the joint that had even started to erode a bit of bone. He wasn’t sure what it was, so he referred me to an orthopedic oncologist.
By the time I saw the oncologist, I was already terrified just hearing the word “oncologist.” He reviewed everything and said that if I looked unwell, he might suspect metastasis from somewhere else, but because I appeared healthy, he felt 90–95% sure it was a benign condition called a giant cell tumor. He recommended a biopsy.
I was frustrated at that point because I was doing everything right—physical therapy, cortisone shots, follow-ups—but nothing was improving. Part of me wondered if I should just accept it as a chronic issue, like my husband suggested when he compared it to his own knee problems. But something still didn’t feel right, because my elbow kept getting worse. I reached a point where even simple movements caused pain, and at 47, it didn’t seem normal. So I kept pushing for answers.
It took about six months before I finally got clarity. The biopsy results showed it was malignant adenocarcinoma. That immediately raised concern that the cancer had originated elsewhere in the body. The orthopedic oncologist said the most likely sources were the lungs or the breast. I initially assumed it was breast cancer.
While waiting for further results, I became increasingly anxious. Eventually, my oncologist called and asked me to come into the office, which I already knew was not a good sign. I convinced him to tell me over the phone. That’s when I learned it was malignant adenocarcinoma.
I remember my stomach dropping. I was extremely shaken and overwhelmed. Even though I had suspected cancer was possible, hearing it confirmed left me in shock and unable to process what to do next.
Shortly after, I had a PET scan. This marked the beginning of a completely new world—new terminology, scans, injections, and tests like CTs and brain MRIs. It was overwhelming, especially while being so emotionally vulnerable.
Fortunately, I got the PET scan results the same day. It showed a mass in my upper right lung, along with other small nodules. It also showed that the elbow lesion and areas in my neck and pelvis were involved. At that point, I was told I had metastatic lung cancer.
Everything after that felt surreal and blurry. I was crying a lot, trying to process the diagnosis while also trying to protect my children from the fear I was experiencing.
My hospital then sent my tumor for molecular testing. At the time, I didn’t fully understand what that meant, but I later received a call asking about it. I was told I had an EGFR mutation, which meant there were targeted oral medications available that could specifically treat it. This gave me my first sense of hope, because I had originally assumed treatment would mean traditional chemotherapy with hair loss and severe illness.
Before meeting my thoracic oncologist, I also learned I had brain lesions on an MRI. Because of this, I met with both a neurosurgeon and a radiation oncologist to discuss whether surgery or radiation should come first. There was concern about possible spinal instability as well.
It was an overwhelming day, but I’m very glad all of those specialists coordinated. Ultimately, my oncologist recommended starting targeted EGFR therapy, which could shrink or eliminate tumors, including those in the brain and spine. I left that day with a prescription for targeted therapy and a neck brace, which I had to wear for three months due to spinal concerns.
I began treatment and experienced common side effects like rash, diarrhea, dry skin, and nail changes. However, I was well prepared for these and supported closely by my oncology team, which helped me manage them effectively.
Over time, the results were remarkable. My brain metastases disappeared, the bone involvement improved significantly, and the lung tumors shrank. After a few months, even my cervical spine showed major improvement, and surgery was no longer needed.
The treatment continued to work well for years. I remained stable for close to three years, and overall I’ve now been on targeted therapy for more than four years.
Later, when my oncologist changed hospitals, there was some uncertainty about possible progression, though nothing was ever clearly confirmed. Around six years after diagnosis, my care team began discussing more localized treatment options. Eventually, I was considered a candidate for surgery.
I chose surgery over radiation and had the upper right lobe of my lung removed. After that surgery, I was declared to have no evidence of disease. It has now been a year since then, and I still have no evidence of disease.
Through all of this, I’ve learned how important mental health is alongside physical health. Living with cancer is an enormous emotional burden, and support—therapy, medication, and emotional care—has been essential for me. It has allowed me not just to survive, but to continue living a full life with my family, friends, and loved ones without cancer defining everything.
The biggest message I can share is one of hope. Lung cancer treatment has changed dramatically in a relatively short time. New targeted therapies, genetic testing, and evolving treatment strategies have transformed outcomes. People are living longer and better lives than ever before, and there is still so much progress being made.