Hi all, and Happy Sarcoma Awareness Week 2019!!!
This week (and month) is all about raising awareness for sarcoma, which if you didn't know (as the majority of us don't) is a cancer of the soft tissue or bone, common in young people.
I was diagnosed with an extremely rare form of sarcoma back in 2016, called Alveolar soft part sarcoma. Since then I have had a mixed few years, making so many happy memories, and receiving a variety of good and bad news in terms of my health.
After they removed my primary tumour in my left shoulder, they discovered growths on my lungs. These nodules were later revealed to be cancerous. Then, I had a recurrence in my shoulder blade, which as a result had to also be removed (leaving me with a fraction of my shoulder blade and muscle!) Sarcoma seemed to leave me alone for a good while then, until September 2018 when I had 2 tumours in my lungs zapped by microwave ablation.
Since my diagnosis I have tried my best to raise awareness for sarcoma. Caught early it can be totally curable, however it is an aggressive cancer that loves to spread and recur. Making up only 1% of cancer diagnoses means it is really under-researched and underfunded. If you google ASPS you are likely to find it difficult to learn anything about it.
For me, the key is understanding and awareness, and then research into treatment.
Obviously, especially at first, knowing how rare and unknown my cancer is, was terrifying. BUT! I have just received some great news - the nodules in my lungs are stable! Having had a chest CT last week, the nodules in my lungs haven't grown or multiplied much at all since my ablation, or even since my original diagnosis. The nodules are tiny (all under 1cm I believe), putting my in a good position for now, and I will have my next check-up scan in 6 months.
Until then, I am left free to live however I want, of course keeping an eye out for new symptoms and a close check of my body (as we all should - cancer or not).
I graduate from University this month, so the next few months will be me settling into adulthood and unemployment (!) practically (but not quite) cancer-free.
Woohoo!!
M x