Just reaching out for guidance and support. In June my husband went to the doctors with a round solid lump on his forearm, he then waited 6mths for a ultrasound and the referred for MRI which was inconclusive so he was referred to a sarcoma centre, after an agonising 27 day wait we were told yesterday he has a clear cell sarcoma? Within the next two weeks he’ll need a CT scan and a PET scan and then to see the consultant again. I am just doing the Dr Google thing which is making me ill with worry, I just don’t where to turn. I’m hoping to find more information and people who have experienced this rare cancer. Sorry for the long post X
Hi Komatsu
My wife has Leiomyosarcoma rather than clear cell but like all sarcoma's they are rare. My wife's diagnosis was let us just say complicated.
One helpful site is our friends at Sarcoma UK, their information on CSS we can read here and I can really relate to the bits "after treatment" and "living with". Janice has had two different types of chemotherapy and for her the second one stopped the cancer growing and it has not changed meaningfully in the last 6 years.
As for me - I broke, then I did a living with less stress course. Learnt not to try too hard to predict what next because really nobody knows. Conscious breathing exercise helps when life decides we need another curveball.
Talking helped me a lot, even typing on here just feeling less alone. There can be an issue with google - it picks up any old thing and nothing gets more notice that a horror story - the are some good sites - here, sarcoma uk, carers uk for you - but a lot of noise.
You might also like to join us over on Carers only forum where we can talk freely about how we feel - because it is not the easiest thing in the world to be a passenger on this journey with our loved ones.
<<hugs>>
Steve
