Hi all. I'm brand new to this forum but wanted to join mainly for support and knowledge from those that have been through, or going through exactly what I have. Last year I was diagnosed with Uterine Leiomyosarcoma. I had a total abdominal hysterectomy with bilateral salpingo-oophorectomy. I then had 25 sessions of high dose radiotherapy and 2 high doses of brachytherapy. I'm now being seen every 3 months. I'm fine! What I would really like to know is, how will I know if it has spread? My symptoms before were extremely heavy periods that didn't stop, but obviously I won't have that anymore. I have a chest x ray every 6 months and told that this is where it could go next - but will I feel anything in the meantime that could prompt me to get seen sooner? I feel I'm trundling along in the dark at the moment, so any advice would be appreciated.
Hi Treenie and a very warm welcome to the online community
I'm sorry to hear that you were diagnosed with uterine leiomyosarcoma last year but it's good to hear that you've finished all your treatment and you're feeling fine.
Worrying about the cancer coming back is common across all types of cancer but it's useful to know what to look for. I have to confess that I hadn't heard of uterine leiomyosarcoma and had to look it up and now understand that it's a very rare form of soft tissue sarcoma.
As the community is divided up into groups I'm going to recommend that you join the soft tissue sarcoma group where you can ask questions, share experiences and get support from others with a similar diagnosis to your own.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post questions by clicking on 'new' and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Treenie
You're currently posting on the New to the Community page, which is fine as lots of people start here if they're not sure where best to post.
If you click on the link I created to the soft tissue sarcoma group in my reply above, and then follow the instructions I posted, you can then copy and paste your post from here into a new post there.
If you need any help finding your way round I'll do my best.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
