Hi all,
I am new to this site and very thankful to have found it. I would like to extend my best wishes and support to all on here affected by cancer.
I'm seeking a bit of advice but I'm not sure if I'm even asking the right questions, to be honest.
I had 2 MRI's 3 days apart nearly 4 weeks ago and the day after the second MRI my GP called to say I have a sarcoma in my thigh. I'm currently waiting for a biopsy to be done.
I received a copy of the MRI report and it says the differential includes myxofibrosarcoma, intramuscular myxoma, less likely liposarcoma given not fat component, and atypical peripheral nerve sheath tumour.
It also mentions a possible tail at the superior margin and the perilesional edema enhancement are features of an aggressive lesion.
My question is, given that there are 4 possible diagnoses and one is benign with the other 3 being malignant, why would my GP say sarcoma with certainty? I guess I'm clutching at straws here that it might be possibly a benign diagnosis. I've been referred to the national sarcoma hospital to get a biopsy so I guess I'm trying to ask, is the MRI report indicative of a sarcoma and I should expect it to be one after the biopsy?
This will be my second time with cancer, if it is diagnosed this way - I had an amelanotic malignant melanoma almost 24 years ago but it's different this time as I have a young family and the thoughts of this being malignant this time is just desperate. I can't bear the thought of them going through this with me if it is cancer.
Sorry for my rambling post - I'm not even sure I'm making any sense. I'd really appreciate any insights or thoughts any of you might have and many thanks in advance.
Hi Tahoe
Sorry to read about what you are going through, it is great that we get a copy of these reports because like you note there can be much more information in there than the often very brief summary your GP might give.
Sarcoma is a major focus in the NHS because it is quite rare and many doctors will only see one case in their entire career and it can be easy to see symptoms as many other issues.
Good to see you have been referred to a sarcoma specialist center, We are really lucky that my wife was being treated in Oxford anyway - she has Leiomyosarcoma and when she was diagnosed our son was about 6.
Janice has had two different rounds of chemotherapy and the second one managed to make her cancer stable and now we have been living with cancer for over 10 years - took a while and quite a lot of help before we were comfortable with that.
Assuming for a moment it is malignant then when you are ready you might like to look at our pages on talking to children, we found talking to our son really quite helpful because he was easily able to imagine things much worse than anything that actually happened including asking what would happen to him if I died too - ouch.
We also kept his school up to date with what was happening and that helped to ensure he got the same information no matter which trusted adult he was talking to.
<<hugs>>
Steve
Hi Catherine,
Janice had not needed any chemotherapy for getting on for 10 years now, indeed her consultant has been talking of discharging her to care of the GP since about the only thing he is doing is taking an x-ray every 12 months and saying "no change".
I ended up doing a living with less stess course that really helped me. Worth keeping track of when your next appointment is and when you should find out results but then if we can keep that in a box because worrying about it changes nothing - perhaps more worrying sometimes can be when they ring up out of the blue though sometimes it can just be they had a cancellation.
Sharing on here is great because everyone knows how hard this is and hopefully together we can make a great team.
<<hugs>>
Steve
