Upper arm sarcoma unclassified

Dear Hilda,

My name is Matthew from the Online Community Team, and I would like to wish you a very warm welcome to the Online Community. I am sorry to hear about your diagnosis, and that you are presently waiting for your surgery appointment.

While you’re waiting for some of our Community members to share their thoughts and experiences with you, I just wanted to make you aware of our ‘Ask an Expert’ section. We have various groups there where you can ask our Macmillan professionals for help and advice on treatment issues, financial support, and more.

To ask a Macmillan professional specifically about potential side effects from your treatment, you can post your questions over on the ‘Ask a Nurse’ group. Just click the ‘+ New’ button at the top of the section to start a new thread to get started:

A Macmillan professional will then aim to respond within 1 to 3 working days. You can also talk to our Macmillan professionals on our Support Line. Our Support Line teams are here to talk and can help you in lots of different ways, including emotional and practical support. You can reach our teams on the Support Line over email, live webchat or by calling 0808 808 00 00. Our Support Line is open 8am – 8pm 7 days a week.

I hope you will find the Online Community supportive and helpful. If you have any questions or need any further support, please feel welcome to get back in touch with us. You can either message us via the private messaging system, or you can drop us an email at community@macmillan.org.uk.

Hi Hilda,

I hope you are doing OK. I found a lump, though mine was Gynaecology related which required 2 surgeries. I was diagnosed with Leiomyosarcoma which can reoccur in any soft muscle. Adapting to changes in body no matter where tales a little time, but you learn to adapt.

Just wanted to say hi and you are not alone

Best wishes,

Chrissy x

Thanks Chrissy, I’m home from surgery and can move my fingers but won’t know how strong my arm will be until the cast comes off. It does feel a bit lonely having such a rare cancer and not knowing if it’s spread  so it’s reassuring to see posts from people in similar situations.

Hi Hilda

Glad the surgery is completed and hope you are healing well. It is lonely having a rare cancer, but on here I have found there is always someone with the same or something close who can relate. I laughed last month when my GP (a locum on the day) had to google my cancer!  

Hugs

Chrissy x

The good news is that my arm is getting stronger every day. The bad news is that the radiotherapy didn’t work and there are still active cells. I’m on 3 monthly scans now to see if anything shows up in my lungs. It’s worrying not knowing when/if that will happen but I’m hoping to be in the % that reach 5 years.