There was no way I could go through this week without posting about Sarcoma Awareness Week (SAW) 2020 (29th June - 5th July).
I always seem to have a scan around this week in July, and this year is no different. With a chest scan coming up next week, this topic feels even more important. Please read on to find out what this week is all about and why it is SO important.
Since my diagnosis 4 and a half years ago, I have always made a big deal over SAW. Why? Because awareness about sarcoma is still so poor.
3 in 4 people still don't know what sarcoma is. 25% of young people with sarcoma waited longer than a year to see a GP about their symptoms.
Early diagnosis saves lives. Late diagnosis takes lives. It's as simple as that - so the more that people know what to look out for, the less people have to die from the cancer.
This year for SAW, Sarcoma UK are trying to drive for earlier diagnosis. They have released a report, Demand Early Diagnosis, Save Lives, based on data from the recent Sarcoma Survey. They found that 30% of sarcoma patients waited more than 6 months to receive an accurate diagnosis (and this is not counting the months spent experiencing symptoms and not doing anything about them!) 1 in 6 waited more than a year for an accurate diagnosis.
Personally, I had symptoms for about a year and a half, and it took about 5 months from first seeing my GP to receive my sarcoma diagnosis. On top of that, I was misdiagnosed 3 times before finally learning it was cancer. As an 18 year old, doctors were certain that it couldn't be cancer. As much as that was reassuring at the time, I believe it is this misconception that adds to the life-threatening delay to diagnosis that so many experience. Symptoms must be taken more seriously, both by patients and medical practitioners.
I have always wondered whether if I had seen my GP as soon as my lump appeared, and expressed fears about it being cancer, then maybe my cancer would not have spread, and would have been curable. Compared to many people, my sarcoma was still quite small when it was finally diagnosed (3cm), but it was still big enough for it to have spread. If I had a pea-sized lump in my breast, I would have no quams about seeing my doctor straight away. I would probably be immediately sent for a mammogram. I would be diagnosed rapidly. But instead, I had a pea-sized lump on my shoulder, and I ignored it and let it grow for more than a year. And even when I did see a doctor, the lump was not taken seriously.
There is no way I would let a breast lump get to 3-4cm big! Similarly, imagine letting a testicular lump get that big - of course you would be worried. So, why are we letting lumps elsewhere grow and grow without worrying about them?
Unfortunately, my story is not unique, nor is it particularly extreme in the scope of sarcomas.
This week Sarcoma UK are sharing the stories of various sarcoma patients whose diagnosis was far from plain sailing. You can check them out over on their Instagram page and in their report. These are stories of people who waited years to receive their sarcoma diagnosis. This issue is not just about getting answers sooner - it is an issue of life or death, an issue of how advanced the sarcoma is, how severe the treatment needs to be. Weeks and months really matter when it comes to cancer, so sarcoma must not slip through the net.
GPs will see hundreds of tumours in their career, but they might see just one sarcoma patient. It is no wonder then that we are so often brushed under the carpet. Sarcomas are difficult to recognise, and medical professionals need to be better equipped to recognise them. It is the duty of our GPs to refer correctly and cover all bases.
Sarcomas make up just 1.4% of all cancer diagnoses in the UK. They are rare. So, don't let this post scare you into thinking you're going to get sarcoma. All I want this post to do is let you know what sarcoma is and how to recognise it, so if you do have symptoms, you can find out as soon as possible what it is. Don't delay getting checked - it probably isn't cancer. But if it is cancer, the sooner it is diagnosed the better the prospects. That make sense? Cool.
Symptoms to Look Out For
If you are experiencing any of the following symptoms, see your GP.
9 out of 10 people who are referred to sarcoma specialist centres are not diagnosed with sarcoma, so don't let your fear prevent you from getting checked out.
Bone sarcoma:
Persisting pain that gets worse
Night pain
A noticeable lump/swelling
Unexplained fracture
Soft Tissue sarcoma:
Lumps that are painful or painless
Lumps that get bigger
Lumps that come back
GIST:
Tar-like stools
Fresh blood in stools
Throwing up blood
Feelings of weakness or tiredness
If you want to do something this week to raise awareness for Sarcoma, it really is as easy as telling one friend about it, sharing a post on your social media pages, talking to your family.
It really is as easy as getting to know your body, recognising what lumps and bumps are normal for you, so you can more easily tell which lumps and bumps are not normal.
If you want to do a little bit more this week, you could donate directly to Sarcoma UK. The charity are a vital resource and support for sarcoma patients and their family/friends, with their incredible support line, as well as their generous funding towards sarcoma research (and much much more work).
You can also get involved by 'catching the can', joining the virtual balloon race, or changing your profile picture on Facebook (find out about all of these on the Sarcoma UK website).
If you can, share this post. All I've ever wanted to do is raise awareness, and I've made a lot of progress over the last few years, but much more needs to be done, so please make this girl very happy and like, comment and share! Also, follow my on Instagram and Facebook and Twitter, because I am always talking about sarcoma and other important things.
Thank you as always for reading, until next time!
M x
P.S. This year I am going to be taking on lots of random challenges, on top of running/swimming/cycling 500k over the year! This is all in support of Sarcoma UK, the national sarcoma charity that funds vital research and support for patients and their families affected by the rare cancer. If you want to support me, then you can donate whatever you can through this link. Even £1 would be greatly appreciated, and you can donate completely anonymously!! Thank you!
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