Devynne describes her journey to diagnosis as a frustrating one. She wanted to share her story because for her it was a valuable lesson in self-advocacy and if she hadn’t advocated, she doesn’t know how far her adamantinoma would have progressed. In her own words Devynne shares her story below.
It was my freshman year in college, I fell on a shuttle bus and slammed my leg into a stair. My entire leg went numb, and my shin became swollen and purple. I was a ballet dancer, so I didn’t see a doctor even though it hurt, I could still walk and dance. A doctor would tell me to take 8 weeks off from ballet, and I figured I had just “bruised” the bone. When it healed, I was left with a permanent dent in my shin.
While the dent became permanent, ballet did not. I eventually quit dancing, graduated from college, and began working in paediatric oncology. Oncology, especially paediatrics, took a while to adjust to. I forgot how rare cancer actually is, and I developed a persistent fear that I or a loved one would be diagnosed. I felt like cancer was a monster looming next door, and I was just waiting for it to notice me or my family. I hoped that working in oncology would grant us a cosmic get-out-of-jail-free-card, that I worked too closely to the monster for it to notice us. I feared the opposite, that working in oncology, and my never-ending anxiety, would attract it. I knew that life doesn’t work that way, and that I probably need a therapist, but I felt my fears just the same. My coworkers expressed similar sentiments, my boss told me how deeply relieved he was when each of his kids turned 1, because the prognosis for leukemia is so much better after the first year of life, so I assumed my anxiety was par for the course. I would eventually learn to function within it. So, when the dent in my shin developed into a lump, I blew it off.
I first noticed the lump when I was 27, nine years after the fall. My sister and I were sitting at the pool when I saw it protruding from my leg. I ran my hand down my shin, and I couldn’t find the dent at all. It was weird, but I figured a piece of bone had chipped off, and I ignored it.
It was summer, I was running outside daily, and I had probably just aggravated the old injury. It didn’t hurt, and I knew where it came from. But even when summer ended, when I traded the concrete for treadmills, the lump remained. It gave me occasional anxiety over the next year and I continued to push those thoughts away.
The following summer, I switched to the sarcoma and brain tumour team at work. And that was when the lump really started scaring me. I would receive the pathology reports for our sarcoma patients and look at the photos of sliced through bone, is that what was in my leg? Did I have a tumour?
I mentioned this to my coworkers, and they brushed it off. Cancer grows fast, they told me, and at this point my lump had been around a year. We’re all anxious, they said, and I agreed with them. I continued to ignore my fears.
I have always been active, and in March 2019, I started weightlifting and running more. By April, the lump started to hurt. It throbbed at night and would wake me up, which absolutely terrified me. At 2am, I would resolve to schedule a doctor's appointment first thing in the morning. I would fall back asleep, wake up at 7am, assure myself I was crazy, and continue to ignore my leg. Rinse and repeat for the next few weeks. But between the pain and my persistent anxiety over it, I finally requested x-rays during a physical in June.
I still expected to find a swollen bone chip from my fall 11 years ago. Instead, we found an 11 centimetre lesion snaking its way through my tibia.
The physician’s assistant who ordered the x-ray said it looked “pretty benign.” A sports medicine doctor in the room over had never seen anything like it.
I remember shaking and trying to convince myself it was nothing. I thought everything was cancer and I knew where this came from! I must have actually broken the bone when I fell, I told myself. It just healed strangely.
I drove back to work and showed the images to one of our oncologists, and I made a point of not telling him about the fall because I wanted his opinion, without my input or explanation. He said it didn’t look like cancer, and he didn’t see signs of quick growth. He thought it looked like a cyst, or maybe a weirdly healed fracture. I then told him about the fall, and he agreed that could be the answer. “No tumour for you!” he said.
I received the official answer from radiology that night, a non-ossifying fibroma (a benign bone cyst typically seen in kids) or scar tissue from an infection. They suggested a second x-ray in 3 months to check for growth, and after that I was free and clear. No one was concerned.
I was relieved, but it still ate at me. No one had given a definitive answer, but everyone seemed to agree that it was strange looking. I was disappointed that radiology had given it two possible diagnoses, but nothing concrete. Working in sarcomas, their diagnoses didn’t even make sense to me. I wasn’t a kid, and it’s not like I had developed the lump as a child, and it had been sitting around stable for 20 years. I also hadn’t had a bone infection—so how could either be correct? Medicine is science, and there had to be an answer. But I felt like I was getting shoulder shrugs and dismissals from everyone.
I googled to find if I could pay for another radiologist to read my x-rays. And then I remembered an app I had used in college, called Figure1. Medical professionals posted strange cases on the app, like an Instagram for healthcare.
I posed as a medical student, posted my x-rays, and asked for anyone’s opinion on “my patient.” (I did this impulsively at 1 in the morning and knew I would regret it when I woke up. But I was so bothered by the lack of answers that I posted it anyway.) An orthopaedic surgeon immediately called it an adamantinoma, and a few others agreed with him.
I googled adamantinoma and was terrified. Adamantinoma was a real cancer, and also incredibly rare. I spent a sleepless night googling. I proceeded to tell my sisters, my family, my coworkers. Instagram doctors, we said. What did they know.
“Adamantinoma” clanged around my brain for the next few weeks. It would periodically nauseate me, and then I would remind myself that there was no way I had something this rare. Especially when I worked in sarcomas—statistically, there was no possible way.
I brought my x-rays to a second one of our paediatric oncologists and asked for her opinion on them. I was careful not to mention the fall. She also said it looked like a cyst or a healed fracture, she saw nothing concerning. I asked her if it looked like an adamantinoma and said she had never heard of that. Don’t listen to internet ‘doctors,’ she told me. I felt a little better.
If two oncologists said it looked fine—it was fine. I needed a therapist, not an oncologist. I stopped digging for answers.
When my second x-rays were due, I made an appointment with sports medicine, because I figured they would know healed fractures better than anyone. They could explain this, and then I would relax.
My sports medicine doctor, to his infinite credit, was the first person to be as concerned as I was. He ordered a second x-ray, and it showed no growth. The radiologist again diagnosed it as scar tissue or a nonossifying fibroma.
But my sports medicine doctor ordered an MRI. That’s a tumour, he said. You need an MRI.
Hearing it labelled a tumour terrified me. I went back to researching. I found that 5 things essentially look the same on x-rays and required further work-up—nonossifying fibroma, scar tissue from an infection, fibrous dysplasia, osteofibrous dysplasia, and adamantinoma. And for some reason, only 2/5 were being included in my diagnosis.
One of my co-workers encouraged me to send a message to the sports medical doctor and ask why all 5 weren’t included. I told her I was afraid of being labelled crazy. By this point, I was really questioning myself. Who was I to tell the doctor my diagnosis?
She said, it doesn’t matter who calls you crazy. It’s your health. Put it in writing.
So I did, but I certainly hesitated to send it. I explained what I had researched. I explained that scar tissue shouldn’t be considered, because I had never had a bone infection. I told him that nonossifying fibroma and the two kinds of dysplasia were typically seen in kids. I asked him why an adamantinoma wasn’t being considered.
I later learned that he sent this message straight to radiology. And I am so deeply grateful that he did. I had my MRI a week later and spent that night in a terrified daze.
The results from the MRI came back the following day while I was running around at work, it was most likely an adamantinoma. Sports medicine referred me to our adult cancer hospital. I cried in a bathroom. I cried to my family. I cried to my coworkers.
The same radiologist read all of my images, from the first x-ray to the diagnostic MRI. This radiologist didn’t include adamantinoma until she received my message questioning the diagnosis—I don’t know if she included it to appease me, or if it never crossed her mind until she was told it, or if she truly saw something on the MRI that changed her opinion.
An adamantinoma should have been considered from the first x-ray, and instead I was told it looked “pretty benign” and if the follow-up in 3 months didn’t show growth, I was free and clear. Adamantinoma, especially well-differentiated ones, typically grow slowly—of course the follow-up x-ray showed no growth.
I met my orthopaedic oncologist a few days after the MRI, and he knew exactly what the lesion was. He said it was osteofibrous dysplasia (which is benign) or a very mellow adamantinoma. He wanted to watch it for a few years, and if it ever grew, we would remove it. Growth would indicate an adamantinoma. This lined up with everything I had read.
I asked if we could biopsy it. He agreed to but said that wasn’t his preferred method. The biopsy would need to be an open incision (not just a small needle) and I could be putting my leg under an undue surgery. But, he said, if I was going to lose sleep for the next 6 months, we could absolutely biopsy it and get an answer now. Of course, I chose to biopsy.
My biopsy was in October 2019 and the pathology came back as a well-differentiated adamantinoma. Because the tumour is so rare, the tissue was sent to a specialist who confirmed the diagnosis. My tumour was successfully removed in January 2020, and replaced with an allograft, 2 rods, and 18 screws.
I am so deeply grateful for the physicians who listened to me. My orthopaedic oncologist has been an incredible example of the very best kind of doctor. He was calm and patient with my litany of questions, even when my clinic appointments went well beyond their appointed time. His work on my leg was meticulous and the tumour is out, my scar is minimal, and I should regain full function.
I cannot possibly thank him and his team enough. I cannot adequately thank my family for helping me, nor can I thank my coworkers for listening to me through this all.
I’m so grateful for my sports medicine doctor who intervened and ordered the MRI, and my physical therapist who has helped me regain my leg’s function. I am so thankful that I kept seeking answers, despite my self-doubt—I got myself diagnosed, and the tumour was removed before it did extensive damage.
But I am terrified by how much persistence it took on my part, and I am enraged at radiology. Yes, my tumour is rare, but a symptomatic paediatric bone cyst in an adult is strange too. That should’ve merited more concern, and more thinking on their part.
The moral of my story is this, every time I advocated for myself it was uncomfortable, but in doing so I was diagnosed correctly, and before the tumour could invade soft tissue. So please, question your doctors. Ask for explanations. If an answer unsettles you, keep digging. Do not let anyone dismiss you as anxious or crazy. Do not dismiss yourself. It is never ‘crazy’ to be persistent and seek better answers.
I wish I could draw some grand conclusions from my experience, but it’s still too fresh and I can’t. I can only learn and grow from it and accept how deeply it is changing me. Grateful doesn’t cover my relief to know what a gift it is to have the tumour out of my body, and to have had a cancer with a good prognosis. But the coin has two sides—and I’m equally terrified by the thought that the monster did indeed find me, and sooner than I ever anticipated. I’m terrified of the cancer coming back, or becoming metastatic, however low the probability may be. I wonder how much of my previous anxiety, which I chalked up to my job, was actually my gut telling me something wasn’t right. I can’t tie the experience up with a bow, to paint it as something purposeful and inspirational. The experience has been traumatising and portraying it as anything but does us all a disservice.
I have a new, sharper sense of my own mortality. I now know how quickly life can screech to a halt. I still fear for my loved ones. The monster is no longer a creature next door; the monster exists in the back of my mind, thankfully asleep for the time being. The monster isn’t just cancer, the monster is death, or catastrophic change. I hope he remains dormant for decades, for lifetimes, though I know life doesn’t work that way either. I know one day it will wake up and strike again, such is the nature of life, but I’m now more present, more grateful for the time in-between, the calm days when my worries are minor. I want to find a way to give back. And I’m still figuring out how to carry on.