Hi there, it's taken me a while to post on here, my 18 year old son was found to have a suspected 3cm Sarcoma in his left thigh in December, which was confirmed in early January. Needless to say it was the hardest festive period we've ever had, with so much fear and all the unknown racing through our minds. My son had surgery to remove the tumour at the end of January and they also removed 2 lymoh nodes in his groin as a precaution. The histology report showed no cancer in the lymph nodes and the surgery appeared to be successful. He now will have chest x rays and CT scans every 3 months. We didn't know it could spread to his lungs before last week's oncology appointment.
We're told his cancer is so rare that only 2 people in the southwest of England a diagnosed each year 
which makes us feel incredibly isolated. It feels so hard to bear at times. He is doing his A level exams and supposed to be going to university this year.
I find myself searching the Internet looking for someone with a similar situation to chat to but I know ill probably not find someone. That said, reading through the Sarcoma posts I don't feel so alone in this.
Sending positive thoughts to anyone reading this :)
Hi ,
Welcome to the community though sorry to see you join our little clan.
My wife has Leiomyosarcoma and can relate to what you say. Luckily we live rather close to a specialist sarcoma centre and - at least in more normal times - it was quite helpful to talk to other patients/carers in the waiting room.
One of the issues with rare cancers is that there is little or no information out there, however on the plus side we always got to see the top oncologist as my wife's case was so interesting.
Assuming he does got to university - assuming anyone goes to university - I would recommend getting in touch with the student welfare service they may be able to provide support that could help him make his appointments and not miss out on the course.
You may have already found sarcoma uk they can be very helpful in that they specialise in this form of cancer.
One of the things we have come to expect is that if my wife sees a different GP when she explains she has Leiomyosarcoma then they look it up on wikipedia.
You might like to check out Looking after someone with cancer especially the bits about the emotional effects on carers - sometimes a cancer diagnosis is compared to a tsunami sweeping all away - but with help we will cope because there is really no choice.
<<hugs>>
Steve
Hi again,
The list of specialist centres is on the sarcoma uk site here and perhaps highlights how "special" sarcoma is. Happy to confirm that Royal Devon and Exeter hospital is on the list that means he is in the hands of people who are experts in the field.
As his mother you have done a great job of protecting him and you will go on doing that - you need the support of expert oncologist and you have that. Sometimes we find the oncologists can seem a little bit insensitive as they deal with cancer every day and of course they are busy sometimes it seems they forget the "this is your first time".
Your GP did a great job too - getting him to the specialist who can help - and it looks like it was caught early, really good news.
One time I leave the room is if someone tells my wife how brave she is - sometimes she will calmy say "when did I have a choice" but other times is really riles her.
As we go through life we all face many choices, one of the books I got for my son who was rather younger when my wife was diagnosed was The Secret C: Straight Talking About Cancer by Julia Stokes.
I think the big thing I had to learn about cancer was that I needed help too, the community offers help in spades as does the helpline and all the other charities. Learning to both seek out and accept help because I will fall and there are people who can help pick me up dust me down and I am back on track.
<<hugs>>
Steve
