Just diagnosed.

Hi holly and welcome to our club, we hope you find it useful - even if nobody want to be here!

My wife has Leiomyosarcoma so not quite the same and for us diagnosis was at the end of a very long period of trying to work out what was actually happening but never the less was both a shock but also a relief in that we then had some kind of path to go forward on.

Janice has had two different lots of chemotherapy and the second one managed to render her cancer stable, this is where we have been now for six years and the oncologists are so pleased she only gets to be monitored every 9 months. 

Sarcoma is one of the rarer kind of cancers so I found it really useful to come here and find people to share with. Another useful source of information is sarcoma UK.

One of the more interesting things we have to deal with is when Janice sees a locum GP for all the other stuff that still goes on in her life and explains she has LMS, honestly the number of times we have watched the GP look it up on Wikipedia but then many GPs will never see a case in their entire life.

<<hugs>>

Steve 

Hi Holly. You've come to the right place for help and support. It is very overwhelming when you are first diagnosed. It is hard to take in everything that's being said. As you said writing things down is a good idea. Have a list of questions ready when you see your consultant. Take each day at a time. Hopefully you will get your full results soon and get on with your treatment plan. I was diagnosed with leiomyosarcoma in the thigh 2 and a half years ago so I can appreciate how you feel. Take care and let me know how you get on. 

Hello Holly,

I'm so sorry to hear to hear your diagnosis. My daughter is in the same situation, her primary is gastric.  As you say the shock and fear are indescribable.
My daughters has had all the main investigations and awaiting biopsies results. She has some weird goings-on in her liver too. 
We should here next Thursday (following an MDT meeting with our local Specialist Sarcoma Centre.

it is the fear of the unknown, and the human trait to ‘think the worst’ 

I am holding onto the hope And belief that the Targeted Treatment Therapy will shrink the tumour and surgery will get the little (5.6 cm) blighter out.

I guess you may have a similar type of medication. I am new to this sight too, but will certainly be visiting it regularly for guidance and support. 

Hi Holly, 

I’m in exactly the same place - got my diagnosis this morning. Also in total shock - I’m also in my 30s and have a small boy, so I know where you’re coming from. Here if you want to chat as we both get sucked into this scary new world - and crossing all fingers for both of us. 

xx