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  • Writer's pictureMaddie Cowey

Wishing I didn't have sarcoma this #SarcomaAwarenessMonth

Today is the last day of Sarcoma Awareness Month! The second most important month of the year (after my birthday month. August. If you didn't know).

Sarcoma Awareness is so so important and I'm not just saying that because I have it and I'm self obsessed.

3 out of 4 people have never heard of sarcoma

15 people a day in the UK are diagnosed with sarcoma

Of those who have heard of sarcoma, a third are not aware of the symptoms.

Do you know what this lack of awareness leads to? Misdiagnosis, late diagnosis and as a result... poor prognosis. Awareness on a public level is poor, which is an issue, but awareness even among medical professionals is poor, arguably an even bigger issue. Most GPs in the UK will come across just one (if that) case of sarcoma in their career. It is notoriously difficult to diagnose, as GPs hardly ever associate the symptoms with cancer.

But, sarcoma is cancer, and it can grow anywhere on your body. Soft tissues, bones, the reproductive system and the digestive system... It's one of those bastard cancers that really can just crop up anywhere, so being aware of your body and your 'normal' is incredibly important.

A lump or swelling in the soft tissue of the body under the skin, often on the arm, leg or trunk:

  • increasing in size

  • is larger than 5cm

  • usually painful, but not always.

Symptoms of Bone Sarcoma:

Symptoms of bone sarcoma can vary depending on the size and location of your tumour.

  • Bone pain, particularly occurring at night

  • A mass or swelling

  • Restricted movement in a joint.

Symptoms can sometimes be confused with more common problems such as a sports injury or in children and young people, or growing pains.

My Symptoms and Diagnosis

My sarcoma (alveolar soft part sarcoma/ASPS) started off as a small lump on my left shoulder. When we first found it, it was around the size of a pea. We kept an eye on it, more because I was interested rather than being worried about it. I honestly had no idea it could be cancer, the thought never crossed my mind. About a year later, I was putting on a summer vest and the lump was suddenly visible in the mirror - it had grown to around 3-4cm in diameter. The lump was completely painless, and fairly solid. It was at this point I decided to see a doctor about it, thinking I'd quite like it removed (not thinking, it might be something sinister). My GP had a look and a feel, said it looked like a cyst, and said they could remove it in the GP surgery. So, I went in to get it removed, and it was then that the doctor who was meant to be removing it expressed some concerns. She thought it seemed too big and too deep to be removed safely, and in fact was more likely to be a lipoma. Despite this, they still decided to try and remove it. After having the local anaesthetic injected, I went into a complete panic. I couldn't go through with the procedure. They told me they could refer me to the hospital for an ultrasound to see if I could have it removed under general anaesthetic. So, give it a couple of months, and I was eventually referred for an ultrasound. This ultrasound came back as 'suspicious'... Even at this point I wasn't worried. This was when I moved to university. My home GP told me to ask my new GP for an 'urgent cancer referral' - but not to worry! My new GP decided this wasn't urgent, and instead referred me for an MRI forward 2 more months and I finally had my MRI. The results? 'Suspicious lump'. Ugh, round and round and circles!

After my MRI, I was finally referred to the sarcoma specialist centre in London. Where I should've been months ago. They told me they were fairly sure that what I had was a 'vascular malformation', but a biopsy was needed to confirm. I didn't even allow a second thought to the other option ('sarcoma')... Lo and behold, another few weeks down the line I had my needle biopsy, and within a week had a diagnosis of a soft tissue sarcoma.

I think what this story should teach anyone reading is to take any bodily change really seriously, and advocate for your own health. If I had fought just a little bit to be taken seriously, if I had thought for a second that the lump could be cancerous, I could have been diagnosed within weeks, rather than months. I wish it was the case that any lump, big or small, was investigated. Imagine if my lump had been investigated when it was pea-sized - maybe I wouldn't be in the position I am now with an incurable, metastatic diagnosis.

At this point I would also like to point out that I have secondary cancer in my lungs, which was evident pretty much from the start. I have absolutely no symptoms of these, even now 5.5 years down the line. It is this invisible cancer that can be quite scary, as if it wasn't for my lump and diagnosis, and being sent for CT chest scans, I would never know about these tumours in my lungs. For some people, symptoms are less obvious than others.

Where I'm at

Most of the time it's fine. Cancer is just a part of my life, I deal with it like a chronic illness - I take daily medication, deal with flare ups as they come, have a mixture of good and bad days in terms of side effects. I recently had to lower my dose of cediranib, a TKI/systemic treatment that I take that is essentially an oral chemotherapy drug. The side effects were getting a bit much for me, and when weighing up the pros and cons my consultant decided to try me on a lower dose. The nodules on my lungs are innumerable, but small in size. After 3 months on cediranib, many had shrunk and nearly halved in size. My next scan showed stability - great news as far as incurable cancer is concerned. I have another scan coming up in August, so it will be interesting to see how I'm faring on this new dose.

My side effects are mostly manageable - the main one is lots of diarrhoea, managed with loperamide which counteracts all the water in my bowels (I think. Lovely stuff!). I get diarrhoea now most days, and at its worst it is bloody awful. I've also started feeling quite nauseated, and on the higher dose suffered with very sore feet. My last blood tests indicated potential hypothyroidism so that's something they're keeping an eye on, and we have to keep an eye on my blood pressure too as cediranib can cause hypertension (high blood pressure). I also have a hoarse voice/my throat feels weird.

A fun learning curve for me recently has been with contraception. You know, most couples have an abundance of choice. I had been on the pill for a couple years, but unfortunately on cediranib the contraceptive pill is less effective (due to the diarrhoea...). So, I stopped taking the pill. I recently asked my team what other contraceptive I could switch to. You see, getting pregnant on cediranib is a big nono! It can cause severe fetal damage, apparently, and if I were to get pregnant I'd have to stop cediranib. Being pregnant and having cancer ain't simple, you see. Alas, I don't want to get pregnant right about now anyway, that's an issue for future Maddie to work out. I just wanted a nice permanent way to prevent pregnancy with my lovely boyfriend of 5 years. My team, after a few weeks, came back to me and told me that they can't be certain that any contraception is 100% effective when combined with cediranib, apart from barrier methods. Any form of contraception would have to be combined with barrier methods, anyway. Too risky otherwise. God dammit.

I must admit, I was sent into a bit of a *sad* place with this news. I am going to be on cediranib for the forseeable, until it stops working. Once it stops working, I will likely be on another treatment - I will likely encounter the same problems. I hate being on a drug that is so unknown. My oncologist couldn't tell me for certain what contraception is safe, the drug manufacturers couldn't say for certain - the contraceptive nurse hadn't even heard of cediranib. Being 'rare' is all fun and games until you actually want to live your life like a normal 23 year old. Being 'incurable' sounds cool until you realise what it really means.

So, I love to be positive, but over the last few weeks I have hated sarcoma. For making this part of my life difficult, for making me worry about my future, for interfering with my relationship (not that my boyfriend lets it affect our relationship, he is amazingly understanding!). Most of the time, I feel grateful for my position, that I'm on treatment that is working and doesn't impact my ability to do what I want every day. I work a full-time job that I enjoy, I suffer no symptoms of my cancer, I'm 'lucky'. But every so often little things like this make me feel a bit crap, and make me wish I didn't have sarcoma.

That's me being honest, as it is important to share the highs and the lows. And I know that I would have loved an open and honest personal blog like this to read when I was diagnosed/going through certain experiences. ASPS is so rare, it's unlikely you'll ever meet someone else with it.

Well, tomorrow morning I will be meeting a fellow ASPS patient! For the first time since my diagnosis in 2016! I cannot wait. This is the reality of living with a diagnosis like ours. Gotta wait nearly 6 years before even meeting someone else with your diagnosis...

Earlier this month, I held a picnic in aid of Sarcoma UK, the only national charity working for all types of sarcoma. They fund research into sarcomas (treatments, diagnostic processes, causes etc.), provide a support line, and help bring sarcoma to the attention of government. They work alongside other cancer charities to improve prospects for sarcoma patients. I bloody love this charity and think what they're doing to raise awareness, share real stories, and everything else is amazing. The picnic is something I first did in 2019, and would love to continue every year. It's a lovely opportunity to gather family and friends, to raise some money, and just come together. It makes me feel like I'm not alone and everyone else cares as much as I do.

Please, if you want to help, donate to Sarcoma UK. If you cannot afford to at the moment, please share this blog, talk to your friends and family about sarcoma, and get to know your body. Every little helps.

Stay safe, and thanks for reading!

M x

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Another fantastic blog Maddie. Very informative, honest and helpful. xxx

Maddie Cowey
Maddie Cowey

Thanks Melanie ❤️

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