Hi everyone,After two months of deliberation between specialists, being told I an incorrect diagnosis of Testicular Cancer followed by " Pop the Champagne, it's not cancer" and a final 2 week stay in hospital, I now know that I have a rare form of Cancer called Leiomayosarcoma (LMS) , a soft tissue cancer.A large mass in my liver was detected on a routine ultrasound whilst looking for gallstones, a following CT scan showed another tumour in my Psoas muscle and later a PET scan revealed a number of "hot spots" in my hip, neck and lung.It certainly has been a shock to both my wife and I as I've been mostly asymptomatic up till now. I was diagnosed earlier this week and I'm starting 3 consecutive day Chemo next week.I've read all that I can about Cancer and Chemo in general and I have found a few American sites about LMS, I've even started corresponding with a fellow LMS sufferer who lives in the USA but I was wondering if anyone had information regarding this unusual type of Cancer here in Australia ?
Gday Alex, welcome to the forums. I can imagine that news must have been a big shock to you. Especially the yo-yoing of different diagnoses. As far as I am aware, we've not had anyone join up to these forums with this type of cancer. Perhaps now that you've put the word out someone will respond. Let's hope so. You will find many people going through similiar situations to yours who will be able to offer advice and support though. I wanted to let you know about Cancer Council Connect, the Cancer Council's peer support program that puts you in touch with a carefully trained volunteer who has had a similar cancer and treatment to you. The volunteer can provide practical information, hope and encouragement when you need it most and this support is available free of charge to anyone with a cancer diagnosis in NSW. I would encourage you to contact the Cancer Council Connect team on 13 11 20 (press 3) to discuss your diagnosis and ask about the possibility of being put in touch with one of our volunteers in the Cancer Connect Program.
Thanks for the quick reply and info Mikey, yesterday when I went to my Chemo Orientation day, I was given a Cansupport brochure and told about their services...This whole thing seems so surreal, today I feel blank like it's not happening to me, yet yesterday morning I felt terrified. I've got Chemo next week and expect the worse but I know that it's bound to be beyond my wildest expectations....
Hi Alex, Check out the, virtualmedicalcentre.com There's some information on Leiomayosarcma from an Australian doctor and links that may lead you to other sites. I wish you all the best with your treatment and recovery. Regards Gaffo
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