Below she shares her story.
I had been experiencing some fatigue and pain in my lower right leg, which I thought was shin splints from playing volleyball. The fatigue I put down to working night shifts and my stressful job in a busy Emergency Room (ER). One day, I was playing volleyball and the bone in my lower leg (tibia) fractured, revealing a large tumour.
My doctor told me that the tumour had been growing for at least 10 years. The pain from the fracture and subsequent surgeries were excruciating.
Originally, I was told that the tumour was not malignant. I had an orthopaedic oncologist tell me repeatedly that it was dysplasia, and some screws and rods would help strengthen the bone. I had the surgery and that doctor said "I'm going to prove what I already know, that it isn't cancer."
I got the biopsy results around one month later thinking it would be normal, and it said the words "probable adamantinoma" and I was shocked. How could it be probable? They don't know? They had to send the biopsy to a university to confirm diagnosis of adamantinoma.
After that the same doctor insisted that I amputate, that the surgery and the fracture had spread the adamantinoma cells everywhere and this was the safest way.
I decided to get a second opinion from a doctor in Indianapolis, Indiana, named Dr Rougraff. He told me that an amputation doesn't guarantee the prevention of metastasis, that he could use cadaver bone instead, and would make sure he had clear margins.
He cut pretty wide area around an inch from the bone and had all clear margins, according to the biopsy report.
I had almost my entire tibia replaced with a donor bone (an allograft), a total knee replacement, and a gastrocnemius flap in February 2022 - where the muscle is used to help reconstruct my leg. I recently had a bone marrow transplant taken from my hip to repair a fracture I had sustained to the donor bone.
I have chest x-rays every three months to check for metastases, as well as x-rays of my leg to make sure it is healing. I also have yearly CT scans of my chest and leg.
I'm so thankful that I got a second opinion from Dr Rougraff and managed to keep my leg, although it has had its downfalls with the subsequent fracture. But since my last surgery I have been healing well, and I'm not nearly in as much pain. I feel hopeful about the future.
Receiving a cancer diagnosis was the most devastating thing that's ever happened to me. Following the initial fracture of my tibia and surgery, I couldn't walk for almost a year and was in terrible pain. Before my diagnosis, I had graduated as a registered nurse and my career had just begun. Not being able to walk left me without a job.
But my friends, family and boyfriend have massively supported me. I have also made new friends, fellow cancer patients, adamantinoma survivors, and that has given me hope.
I have had to physically alter my home and find a job that accommodates me. I have also learned how to cope with my feelings, as well as to be compassionate and patient with myself. I give myself time to experience life more instead of rushing to the next thing, and never give up no matter what setback I have.
My message to others is that no matter how afraid you are, there will always be someone else who has had the same experience as you that has made it through.
There is little benefit of chemotherapy and radiotherapy in the treatment of adamantinoma, and the first scan to see if the cancer had spread was the scariest experience of my life. Especially waiting for the results. But we can do things scared, and we can have hope even when we don't feel like it.
It is so important to raise awareness of adamantinoma, because without an early diagnosis it can be fatal. This disease is so incredibly rare, and the only effective treatment is surgery to remove the tumour. A lot of doctors have never seen this type of cancer, and do not treat it due to misdiagnosis. Not only is awareness important for patients, but for doctors as well.
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