Hi all
I was diagnosed with mpnst last September. Had a tumour in my thigh and soon after being diagnosed had 30x radiotherapy treatments, followed by surgery in early Feb of this year.
In May, I found that I unfortunately had lung metastasis. After what felt like a really long wait, I started stereotactic radiotherapy in September. Latest scans show that it appear as though the radio did not work, but hospital want to wait and do further scans in about a month to confirm. I have lung inflammation which may be making the tumour appear larger.
Feeling very stressed and hopeless right now. Feels like there has been just a lot of waiting since May.
Hi Shazia
Sorry to hear about what you have been going through, waiting is something we all struggle with especially when we hear a lot about the sooner treatment starts - that message is mostly focused on getting people to go to their GP in the first place - and we are all long past that stage.
From my understanding radio therpay can cause a lot of inflammation and so takes some time to settle down before anyone knows what is actually there and what is simply slowing getting better on its own - a real pain but one that cannot really be helped.
My wife has Leiomyosarcoma and that was not even diagnosed until after it had spread to her lungs. For her the only option was chemotherapy and while that was not without it's own complications however the good news - her cancer has been stable now for over 10 years, It took us a while but now we are both confident in saying we live with cancer rather than anything else. Janice says "it is not bothering me and I am not really bothering it".
Glad you shared on here though, it can be amazing finding people to share with who just get how we feel and that connection can be some kind of antidote to the stress becoming overwhelming.
<<hugs>>
Steve
