S.A.R.C.O.M.A

Give me an S! Give me an A! Give me the rest of the letters in SARCOMA! And what do you get?! A pesky little cancer that grows in soft and connective tissues and nerves! Yes, that’s right, today’s post will be all about sarcoma!

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Me vomiting rainbows because I am so excited about having talked about myself for so long and also because it is my birthday (there I go again, I couldn’t control myself)

I decided this post was necessary because the reason I really wanted to make this blog in the first place was so that sarcoma became more well known about. My struggle for diagnosis and the correct route for treatment is, although scary, not uncommon and I hope that by hearing my story and what I have experienced even just a few people, if they are unfortunate enough to have sarcoma, might be able to avoid these difficulties. Yesterday when I was thinking about this I came to the realisation that actually, so far in this blog, I have basically done what I do best and bang on about my favourite subject ever, myself, for about 10,000 words or so. Minimum.

Although I am aware I am extremely interesting and a right old laugh, I am not sure actually how much more anyone who has read this blog deliberately, or accidentally stumbled across this website when misspelling an Adele song, has learnt about sarcoma since they arrived here. And apparently it turns out that to spread awareness of something, you have to actually mention it at some point – I know, who knew right?!

SO, with no further ado, let’s get to the subject in hand: SARCOMA!

(Here I will warn you that I know very very little about sarcoma and so I will be getting all of my information from very reputable sources on the Internet.)

  • Sarcoma is a rare type of cancer and is, as touched upon above, the name for cancer of the soft and connective tissues, as well as the nerves.
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I was trying to find a good picture of the sarcoma ribbon and I showed my mum this one, who then got super stressed because she thought I wanted this as a tattoo.

(That first knowledge bite was from my mum, a semi reputable source. Only joking, she knows lots.) From here on in, we go to SARCOMA UK (the bone and soft tissue cancer charity) for our information:

  • Sarcomas can develop in the muscle, bone, cartilage, tendons, blood vessels and the fatty and fibrous tissues. This means they can affect almost any part of the body – mine was found to be growing along my right sciatic nerve, in one of the bone cavities in my spine.
  • There are three main types of sarcoma: bone, soft tissue and gastrointestinal stromal tumours, or GIST (this sarcoma develops in the gastrointestinal tract, a long tube running through the body from the oesophagus to the anus, and includes the stomach and intestines.
  • There are about 100 different sub types of sarcomas. Mine was originally thought to be a Malignant Peripheral Nerve Sheath Tumour (MPNST), however was later found to be an Epitheloid Sarcoma.
  • There are approximately 3,800 new sarcoma diagnoses each year. 3,330 of these are soft tissue sarcomas (including GIST) and 500 are bone sarcomas.
  • Sarcomas account for 1% of all cancer diagnoses.
  • However, sarcomas account for 15% and 11% of all cancer diagnoses in children (0-14 years) and young people (15-24 years) respectively.
  • 16% of people with bone or soft tissue sarcomas are under thirty, and 37% are under 50.
  • Sarcomas are usually found when a lump appears on the leg, arm or trunk. Mine was found after months of worsening leg pain, originally thought to be sciatica.
  • Because of their rarity, sarcomas are often misdiagnosed. Mine was only correctly diagnosed after months of my family and I searching for answers to my symptoms. I am not scaremongering here but I want to say that if you think there is a problem with your health and you are not getting any answers for why you are having certain symptoms, be persistent and do not give up. What I saw in Stanmore during my stay angers and saddens me; there were too many patients who had endured months and even years of pain because of lack of awareness of sarcoma, as well as patients who are now facing severe life implications and have needed limb amputation. Only you know your body, nobody else; if you know something is wrong, fight.
  • The best chance of survival from sarcoma is to have it diagnosed early. This means treatment can be effective and start before the sarcoma has spread to other parts of the body. My type of sarcoma likes to spread to the chest. For this reason, I will be having regular scans and x-rays for many years in the future.
  • As soon as sarcoma is suspected or diagnosed, it is vital that patients be referred to a specialist sarcoma team as early as possible.

I know that I am no expert in sarcoma, but I have some advice to give anyway because I like to give advice as I am full of my own self importance. Also because this stuff is important to me. I have gone through this and to be frank it pisses me off that people are suffering unnecessarily because of lack of awareness. Doctors and surgeons make mistakes – they are only human – but if we can catch them making these mistakes before they happen by being educated about sarcoma ourselves, then surely that is a good thing? So:

  1. Trust yourself (yes, already mentioned but THIS IS IMPORTANT)
  2. Do not worry about being a pain. Doctors are there for you and if you are worried about something, aren’t happy with the answer you’ve been given or even just need to talk something through, tell them. They won’t mind, and if they do – who the hell cares?!
  3. Insist on being referred to a specialist team. This is non negotiable. If Sarcoma UK are saying it, do it. When I was first told that I had a tumour, my surgeon assumed it was benign and operated using an incorrect technique. This not only meant it regrew and I needed to have another operation, but it has actually increased my chances of it spreading. I cannot be angry at my first surgeon because he actually found my tumour and the reason for my pain, something multiple doctors had been unable to do for months prior to this. However had, upon even the slightest suspicion of a potential sarcoma, I been referred to a specialist sarcoma team these things could have been avoided.

So these are my incredibly insightful words of advice and some nuggets of sarcoma related wisdom. I hope that wasn’t too boring and I hope you have taken something away from this post, because everything I have written here today is really really important to me. If you want to learn anything more about sarcoma, SARCOMA UK really is a great place to start and has lots more information and statistics.

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SARCOMA UK – an excellent source of information and very worthy charity.

SARCOMA UK, apart for being a brilliant source of information, is the UK’s leading bone and soft tissue cancer charity. Although they do amazing work, lots more funding is needed to understand more about sarcoma and effective ways to treat it. Please visit www.sarcoma.org.uk to find out more about sarcoma (actually some of it is quite interesting). I also want to encourage everyone to, if you are at all thinking of doing a charity run or anything like that, please consider doing it for a sarcoma related charity. I know that so many charities are important and need support, but this is such a worthy cause really in need of some extra donations.

I have recently found out that some of my absolutely amazingly lovely fellow students at university have decided to hold a charity event on 17th December at 7pm with all proceeds going to Sarcoma UK. I cannot thank them enough and it sounds great – there will be live music, a charity auction, a bake sale and lots more! The event page can be found here.

Lastly! If you want to make any donations yourself towards the cause, I have set up a Just Giving page, which can be found at www.justgiving.com/bethsemikin. Any donations will be massively appreciated, and I want to say a massive thank you to everybody so far. We have smashed our initial target of £1000 thanks to all your generosity!!