After living in China for three years, Carlotta had to move back to Italy following a diagnosis of admantinoma to live with her father and sister who now take care of her. Below Carlotta shares her courageous story and how she does not worry about her future as she wants to concentrate all her energy into healing today.
In 2018, I realised I had a bulge above the ankle on the outside of the leg, I didn't give it much importance but after about a month it started to hurt, especially to the touch. On December 24, I went to my doctor for the first time and he prescribed me an ointment.
After seeing no changes, I returned on January 2, 2019, where I underwent the first X-ray. They told me that there was a bone alteration, but they had no idea what it was, so they told me to consult an orthopaedist. I admit that I underestimated the situation and I waited a month before booking the follow-up visit. I was referred for a CT scan and an MRI scan, but it wasn't enough to be able to determine what the bone alteration specifically was.
After two weeks I was hospitalised as they decided to do a more invasive biopsy with the intention of taking a sample of material that could give us a correct diagnosis, but it did not turn out this way.
The first diagnosis given was synovial sarcoma, they told me the treatment plan would be: radiotherapy, chemotherapy and then surgery to eliminate the tumour. I also went on a two-week journey to take my eggs and freeze them (cryopreservation) in case I became sterile from treatment. In the meantime, the doctors decided to review the material taken to understand for certain what type of cancer it was.
After about three weeks, doctors told me that it was not a synovial sarcoma, but in fact adamantinoma… So, we had to start again, everything we had talked about up to that point no longer made sense.
They told me adamantinoma has no cure.
They told me that I could try other treatment options, but they already knew that they would not work, the tumour was also too large, it involved not only the tibia and fibula but also most of the soft tissues.
They told me there is no solution. We have to amputate.
My oncologist suggested three names, the only three doctors besides her who specialise in the treatment of bone cancer. The same day I met the first doctor who advised me the tumour was too widespread and I would need an amputation. They doctor said they could remove it all but at that point my leg would totally lose functionality, so it doesn't make sense, I would need it amputating!
The next day I met the second doctor. He was almost annoyed by the fact that I wanted more explanations, he told me that the only solution was the amputation - not only because the tumour was too widespread, but because if I did not have the amputation I would have 100% chance of recurrence.
There are two sentences that he said to me that have stuck with me ever since:
1- "Miss would you prefer to die of old age or cancer?"
2- "If we decide to save this leg, in 5 years’ time, only your father will be here because you will no longer be alive, to tell me that I was right."
Obviously, I decided to make an appointment with the third and final doctor on the list who was in Bologna. He told me that he had never seen anything like this. His preference was to make a third revision of the material in the best centre of pathological anatomy in Italy to be one hundred percent sure that it was adamantinoma. The fact that the tumour had affected both the bone and soft tissues confused him.
After two weeks they confirmed the adamantinoma diagnosis again and told me that they could try to save the leg, it would be a difficult operation, but it was an attempt. They told me from the beginning that they would not know what the end result would be, but it was still worth a try in my mind.
At the Bologna hospital they confirmed that there is currently no useful therapy to treat this type of cancer. So I only had operative treatment, they replaced part of my tibia with that of a donor, the fibula was partially removed and also part of the soft tissues were removed.
When they told me for the first time that I had cancer, everything stopped, perhaps I had a slight heartbeat. I just wanted to go home and spend time with my father and sister to share that moment with them.
I didn't cry and I didn't despair, I reacted from the beginning in a very positive way and I felt guilty for this. I thought I was a superficial person, I didn't know how it was possible that I was calm despite having received such bad news. All the people around me were surprised that I seemed so calm.
Ok I have a tumour, but here and now I feel fine so why should I worry?
I was thinking that when my body is actually feeling sick, when I actually lack the strength - at that point I will allow myself to feel bad, to cry and worry. But at that moment I was fine and I did not want to waste time locked in the house crying.
I admit that I was more upset when they told me that they would have to amputate my leg, I remember that I cried twice, I was alone in the house and I wondered "why, why me?". I soon realised that crying and wondering why a bad thing had happened to me would serve no purpose, rather, let's see how people who do not have a leg live!
Thanks to Instagram I was able to contact an Italian girl who lost her leg in a car crash, I sent her a single message and this made me feel better. I felt better because I had shared my mood with a person who, at the time, could really understand how I felt. I knew that if someone else could have done it, I could do it too - it would certainly not have to be the end of the world.
I felt worse when I thought of my father. I felt bad because I knew he was suffering, and this has always been a stimulus for me to never stop smiling. I wanted to make him understand that everything was fine and that we shouldn't worry, I felt it would be all right.
We never left the hospital without laughing for some reason; whatever the news, one worse than the other, I found a way to make irony, seeing myself so calm helped him to relax and we ended up spending hours laughing at this absurd situation, even being a bit strange in the eyes of the people.
My father was my strength, he is my strength even today and I think I am his strength.
With the third and final doctor, I decided to try and save my leg, it had its pros and cons - a pro is that today I have two legs, a con is that I have two legs, but only one works.
Today my body is not as strong as before, today I no longer walk with only my legs, today I know what it means not to be independent.
I realised that everything I've always taken for granted in life isn't actually worth taking granted for.
I cannot tell you that every morning I get up with determination and enthusiasm and that I desire to split the world, because this is not the reality. Many mornings I open my eyes and I lack the courage even to get out of bed, many mornings I would never want to start my day and on many others I hope it's just a bad nightmare. Every morning my leg does not give me help, it leaves no room for false illusions, every morning my leg is ready to remind me of what happened and what my new limits are.
But thanks to what I go through, on one hand it can be painful to start the day, on the other it is amazing because I never forget what has happened to me that day.
Every morning my leg reminds me what my priorities are, it helps me to channel my energies and not to disperse them in futile things (as I often used to do in life), it helps me not to find problems that don't exist (like human nature usually does), its helps me not to get lost in useless complaints and non-existent limits and it helps me to enjoy the present and to appreciate many things that I had taken for granted before.
When you are 20 years old, you take life for granted, start making plans, start making decisions and start thinking about your future, you do not think of the possibility that one day a rare form of cancer will hit you. I did not think that one day I would need someone to even just be able to set foot outside the house - but it can happen, it happened to me!
Thanks of everything I have been through I understand that life is beautiful, it is unpredictable, it forces you to always exceed your limits, it forces you to see things from different points of view, it forces you to change and everything adds more value.
I learnt to treat the hard moments of my life with the same care as the happiest ones.
Today I am more aware, today my life has made more sense, and although I am sure that many other things will change and many other things I will change, today I can say that I am happy.
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