Mollie was diagnosed with osteosarcoma in her left tibia in September 2020 at 16 years of age, after experiencing pain and swelling in her knee. After the tumour failed to respond to chemotherapy, Mollie underwent an above the knee amputation. Mollie kindly shares her inspirational story below.
Ever since I was young, I have struggled with leg pain in my left knee, but because I am an overweight child, we never thought anything of it. In March 2020, I started experiencing more and more severe leg pain up and down my left leg, but mostly in my knee.
We thought nothing of it again, and just thought it was a pulled muscle. All through the first COVID-19 lockdown, it didn’t get any better, and in fact got worse.
Around June 2020 I went to a beach with a couple of friends and fell onto my left knee, and that’s when the worst pain started. The next day I went to A&E, but because I was 16 and COVID was at its peak, I had to go in by myself. I saw a doctor and had an X-ray. The doctor had pointed out to me a patch of “fluid” on the X-ray that had come out of my knee when I had fallen. He said to go home and it will heal, so I did with some crutches and painkillers. For a couple of months, I was doing online physiotherapy, and my leg was becoming more swollen and more painful. So, in August 2020, my grandma and I rang up, and asked if we could be seen in person by a physiotherapist to check my leg and give us some answers hopefully on why it wasn’t improving.
At this point, I could barely weight-bear on my left leg and if I did, I would be in a lot of pain after. I couldn’t walk upstairs, and I would cry for hours about the pain in my knee.
We went to see the physiotherapists and they agreed with us, something more was wrong with my leg. The physiotherapist then booked an emergency appointment with another doctor.
When I had arrived at the hospital and saw the doctor, he was very rude to me, called me overdramatic and told me I was too lazy to complete the exercises set by the physiotherapist and that I was making my leg swell on purpose.
My grandad was allowed to come in with me to this appointment, and he demanded another X-ray to be done on my leg, so the doctor agreed but very reluctantly. 10 minutes later, I was called back into the doctor’s office, and I was told I had a bone tumour in my left knee, and that it could possibly be cancer.
I was then referred for an appointment with an orthopaedic consultant who told me I would have a biopsy at the Royal Orthopaedic Hospital in Birmingham, where I received the diagnosis of osteosarcoma. I didn’t have a lot of symptoms but some I did have were swelling of my knee, pain, tiredness and unexpected weight loss.
After receiving my diagnosis, I went to Leeds Teaching Hospital to have scans and to have my chemotherapy treatment, which started on 12/10/2020. I had three different chemotherapy drugs; cisplatin, doxorubicin and methotrexate. I had three and a half months of chemotherapy, until December 2020 when I had a seizure. The seizure was caused by one of the chemotherapy drugs (methotrexate) scarring my brain.
After a couple of months of chemotherapy, I had an MRI scan on my leg, to determine whether I would be able to have limb salvage surgery. Unfortunately, the tumour had gotten much larger, and I had a skip lesion (a smaller osteosarcoma separate from the primary tumour found in the same bone.) in my left leg so in January 2021, I had a left leg above knee amputation.
My leg amputation went very smoothly, and by the end of the month I had started chemotherapy again. I had chemotherapy until April 2021, when I had ended up in intensive care because I was experiencing heart complications. That’s when we all decided it was best to stop treatment as I only had one more round to go anyway. My cancer journey has been very complicated, and throughout I experienced terrible things like three line infections, three episodes of sepsis, seizure, hypervolemic episode, heart complications and nearly organ failure.
In April 2021, I was told I was in remission, although I still have seven very small tumours in my lungs, which cannot be operated on unless they grow.
I would definitely say most experiences with healthcare professionals have been positive, apart from when I first found out I had a tumour. The most negative experience I have had is probably the number of friends I have lost throughout my treatment. When I first got diagnosed, I had no idea how much it would affect the people I have supporting me, but it really has. I have lost friends I thought I would have for life, but unfortunately, we have lost touch or fallen out as they can’t cope with my diagnosis. I would probably say the best thing to come out of my cancer journey is meeting my best friend who I met through the hospital and the teenage cancer ward. Since meeting we have connected online, and she is most definitely one of my biggest supporters with everything I do.
My leg amputation has definitely changed my life, in some ways I believe I have a better quality of life now, as I’m no longer in pain. Although I have had to adjust huge parts of my life, like my home, the way I get around (currently in a wheelchair, but I am learning to use a prosthetic leg) and my chosen career in the future.
The thing I get the most strength from to continue fighting is most definitely my family and friends. Having my grandma and grandad by my side throughout my treatment has meant the world to me. My grandma would stay with me at the hospital while having treatment. I have seen her at some of her lowest times and highs and seeing her is what makes me carry on. My four siblings also give me strength. Since I’ve been ill, I have become a lot closer to them, and I really don’t know where I would be without them.
My advice to others is to always stay positive! If you’re not positive, how are you supposed to fight your illness? You have got to be your own number 1 supporter; you’ve got to believe in yourself to get through the toughest time of your life. Another thing, don’t feel guilty for feeling ill, and not being able to take part in things with your friends. If they’re true friends they’ll understand.
Awareness is so important, being someone who found out about their cancer quite late, it’s affected me in lots of ways. One of them is that I couldn’t save my eggs, as we were worried about the cancer spreading more the longer we left it to start treatment. If we had found the cancer earlier and I had questioned the doctors more, I would’ve been able to save them, and I would’ve been able to have children in the future. Another reason I think early diagnosis is important is, it could’ve saved my leg from being amputated.
My experiences have made me a stronger person, and my dream is to now share awareness of my rare bone cancer, to hopefully help people find the positives in their experiences as well.