Post 3: How rare?
So, how rare is the Pleomorphic Liposarcoma that I have?
Well, pretty rare as it turns out! (Who knew?)
Yes, that’s right, and everyone that knows me would say that I couldn’t pick a regular, off-the-shelf type of cancer… nope, I had to go and get a very special type that only a very small number of people develop each year.
Why have the boring ones that everyone else has?? Pfft.
To prove it, here are the stats:
• Around 7,500 people are diagnosed with cancer each week in the UK (or about 393,000 a year).
• Approx 84 people are diagnosed with a Sarcoma each week (about 4,300 a year).
• But only 43 people A YEAR are diagnosed with a Pleomorphic Liposarcoma.
So, I used to think that I was one in a million, but it turns out I’m actually just one in 43…! 😂
But as a statistic, 43 out of 393,000 people in a given year is… 1.094147582697201e-4 ⬅️ basically, I have no idea what this means, but I know that it means it’s a very small amount..!!
ALSO (and to highlight how worrying this was initially), in late November ’23, I had a phone call with one of the (amazing) Oncologists from Addenbrooke’s hospital in Cambridge, to explain how super rare it was and… that they couldn’t help me.
No joke.
He said that they weren’t equipped to deal with this, and they weren’t even sure that they wouldn’t mess it all up by doing a biopsy.
As you can imagine, this was a little hard to comprehend, as Addenbrookes is a *huge* facility, with lots and lots of very clever people working there. But I was someone that they had to refer-on to a much smaller hospital in Birmingham; one where Sarcomas were their bread-and-butter.
I kid you not, Birmingham is the Centre of Excellence for Sarcoma tumours in the Western World.
Will write about the Birmingham hospital in another post, as this is going to be somewhere that I’ll be visiting A LOT in the future… Just a shame that it’s 2.5 hrs away from where I live!! 🤪
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