Maddie's Cancer Tales

Cancer has changed my life, but it does not define my life. 

I was 18 when I was told I had cancer. I had just started at university, I was incredibly naive, and at the same time was going through my first heart break. It felt like my world was falling apart. I couldn't work out which thing I was more upset about - the break up or the cancer diagnosis? My view on life started to change - suddenly I was faced by my own mortality and coping with that was not easy. 

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Since my diagnosis, I have learned so much about my type of cancer - sarcoma. It took over 5 MONTHS from the point of first visiting my GP to the point of diagnosis. And I had had symptoms for about 18 months before that. I have since learned that this is all too common for sarcomas. 

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I had my cancer for nearly 2 years before I received my diagnosis. 

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The only indicator that something was wrong was a small, slow growing lump on my left shoulder - and that, to me, was not sinister. The real reason I first went to the GP was because the lump was getting big enough that everybody could see it and I thought it was ugly. 

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So, after being told it was a cyst, and nearly being operated on in the doctor's surgery (before I, luckily, freaked out about it), I was told it was probably a lipoma, but if I wanted it removed I'd need an ultrasound first. 

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A long few weeks later I attended my ultrasound. The results of which were suspicious. (suspicious?!) Up until this point I had absolutely no concerns about cancer at all. 

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Now here comes the kicker - it then took 2 MONTHS to get an MRI of my shoulder. A diagnostic test that if under the correct system should have taken 2 weeks to receive. In fact, I probably should have been referred straight for a biopsy at this point, but for some reason the sarcoma pathway was not correctly followed and my diagnosis was delayed. 

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The MRI was, obviously, 'suspicious'. They said it looked somewhat like a 'vascular malformation' - a harmless, benign condition. But it also looked very similar to something called 'sarcoma', so I really needed a needle biopsy to be sure. My consultant at The Royal National Orthopedic Hospital was over 90% it would not be sarcoma. 

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As you by now know, it was sarcoma, a subtype called alveolar soft part sarcoma (ASPS), and here is where my story really begins. 

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Unfortunately, having my tumour cut out was not the end of the road for me. 

 

It had spread to my lungs and was growing

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Some months later it turned out that the sarcoma had already spread to my lungs and, although very slow, was growing. Some months later again, they found another spread - this time to the bone, a 2cm lesion in my scapular. You can imagine by this point I was feeling pretty sorry for myself. 

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However, then!! My cancer started growing very very slowly - it was stable! I had almost a year of no treatment, and time to process my diagnosis, and live 'normally'. That's when I started this blog. November 2017. The start of really sharing my experiences openly, and processing what I'd been through and what I was likely to experience for the rest of my life. At the time I was studying abroad in Rome, and that year was such an amazing period of my life. I am so lucky that cancer left me alone for a whole year to enjoy and make the most of that year, even if I did have to travel back to London a few times for scans.  

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In September 2018 I had a microwave ablation to 2 nodules in my right lung that had been a bit sneaky and been growing more than the other nodules. The procedure was fairly simply and only required a one night stay in hospital, with no long term side effects. I did have some lung pain following the ablation, but to know that two tumours have been successfully zapped away is great.

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My cancer is currently incurable, I am living with 'innumerable'/'multiple bilateral nodules' i.e. lots of metastases in both lungs. In July 2020 they were growing, and it was decided I should be started on systemic treatment. 

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Unfortunately, traditional chemotherapy is ineffective on ASPS, which is why I was never offered it at the start. There is no curative treatment for ASPS and there is no 'first line' treatment. Any treatment for ASPS is essentially experimental and most systemic treatments are in their first stages of trials. The first treatment I tried was an oral medication called Cediranib, granted to me on 'compassionate grounds' as it is not ordinarily available on the NHS. 

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While Cediranib showed some positive effect, initially shrinking some of my lung nodules, at the start of 2024 it was clear that the drug was no longer working for me. My lung nodules had slowly been growing for quite some time. 

 

In May 2024 I started a new treatment as part of a clinical trial. It has been a really tough ride so far as my body has reacted bady to the new drugs. This trial is called 'Immunosarc' and takes place at a research facility in London. It combines two drugs, an immunotherapy given into the vein, and another oral drug. Unfortunately, after just one dose, my liver severely inflamed (known as hepatitis) and I caught an infection requiring an admission into hospital and treatment with IV antibiotics and steroids. So after just one dose the immunotherapy has been withdrawn, and I am now on a reduced dose of the oral medication. The oral drug is Sunitinib and works in a similar way to Cediranib. The hope is this trial will stabilise my disease and buy some time. Some people ask me how long I'll be on treatment, and the answer to that is: I will remain on treatment as long as I can tolerate it. This cancer is not curable, so unless I have a rare response to treatment, there is no end date. That is a hard pill to swallow and some days is very hard to accept.  

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When people find out I have cancer, some say things like 'But you're so young!' or 'But you look so well?'. Society has built an image of what makes a cancer patient, and I don't fit the mould. But let me tell you something, most people living with cancer do not fit into a mould either! What does a cancer patient look like? We are all completely unique, as we humans tend to be. There are hundreds of types of cancer and nowadays so many different and incredible ways to treat cancer. I still have hair, I exercise, I work a 9-5, I am a healthy weight, I have a very active social life, I travel. I live the best life I can, while I can, with the means I have.

 

I may look young and 'healthy' but what you don't see are the days spent in hospital, the needle scars on my arms from hundreds of blood tests and IVs, the medications I take on a daily basis, the hours spent feeling sick on the toilet, the fatigue, the anxiety, not to mention the intimate relationship I have with death and dying. 

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Cancer has changed my life, of course, it is a crazy diagnosis to receive at 18, but I hate to mlet my life revolve around it. It makes me so grateful for hours, days, weeks, months of good health, for my loved ones around me, and the opportunities life throws at me. However, I do not like to 'thank' cancer for any of my good qualities or any goodness in my life. I would discard it in a heartbeat. I would do anything to get the health of my 20s back. 

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That said, my experiences have guided me to be and do what I love today - volunteering with the cancer/hair loss charity, Wigs for Heroes, being an ambassador and fundraising for Sarcoma UK, and working full-time at a local Disability charity. I raise awareness about cancer, particularly sarcoma, but also so many other things I care about like mental health, and issues that affect our society. Cancer and other life experiences have made me value my voice and value my own opinion.

 

I am very realistic about my prospects, the prognosis of sarcoma is crap and not something anyone in their 20s should have to face, however I am hopeful about the potential future of medicine, and I do have a weird cancer that can go through long periods of indolence and stability, so I have time on my side. For now, I will hold onto that and continue to take each day as it comes and make the most of everything I have in the here and now.  

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That's my 'story'. So far. Thanks for reading. Please do subscribe for monthly blogs from yours truly. This website/blog is here for anyone who wants to learn about living with cancer, about sarcoma, and who has an interest in my life! I want this to be a safe space for anyone who like me just wants to hear from someone going through a similar experience, as I felt so lonely and lost when I was diagnosed. A blog like this would have helped me so much. I hope I can be that resource that makes people feel less alone. 

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M x

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