I have been diagnosed with this rare uterine sarcoma. After 2 months of tests etc I will see a doctor tomorrow..first time I have seen or spoken to one since GP referred me 2 months ago!
I am frightened, and there seems to be no info re treatment, prognosis etc except Google searches..terrifying!
The consultant seeing me has said she has never seen a case before.
Any positive experiences or info?
x
Hi Goldengirl oap and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis.
I have lived with and been treated for two very rare and hard to treat types of Lymphoma one being incurable for over 25 years and it took 14 years before I actually talked with someone with one of the conditions.
I did a search of the Community and got no hits on Pleomorphic Randomyosaroma but that does not mean that there is someone on the Community but they have not posted as yet.
I do see that you have already joined our Womb (uterus) cancer support group. It may be worth putting the same post up n that group just to widen your search for a connection…….. and possibly our Soft tissue sarcomas group as well.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community….. but in the meantime I do hope you find the support you need ((hugs))
Hi Goldengirl oap
Welcome to the Online Community.
I am sorry to hear of your diagnosis of a uterine sarcoma.
I see you have joined the Womb group as well, which is a good plan.
Because your cancer is one of the rarer ones it may be helpful to post in the soft tissue group as well.
Soft tissue sarcomas forum | Macmillan Online Community
I do remember a lady recently with a similar sarcoma on the forum.
Rhabdomyosarcoma | Macmillan Cancer Support
I have just noticed that Thehighlander has also made some really helpful suggestions.
Jane
