Hi everyone.
I live on one of the smaller Canary Islands, La Palma.
I thought I'd pulled a muscle in my thigh. My doctor thought so too, but two friends who give massages weren't so sure. When I went back to my GP, it was a burned-out looking holiday fill in, who didn't even look at my leg. In the end, one of the masseurs persuaded me to go dip into my savings, see a private doctor and at least find out what it was. So off I went, expecting it to be a torn membrane or something like that.
The private doctor said, "No, that's not a muscle spasm. You need an MRI scan to get to the bottom of this. Tomorrow."
I should have been worried, but to be honest, I was more worried about the cost. So I had the scan and I was told it would take a few days for the results. They called me the next morning, and said, "There's a slot for you at 12:00." I thought it was a cancellation.
So I walked in expecting to hear that something was torn and I was in for a nasty operation, or, worst case, that I'd be lame for the rest of my life. So I went alone.
And the next thing I know, the doctor's talking about "sarcoma" and "Oncology" and "16 cm long."
There was no sign of any secondaries on the initial scan, but that was only my legs. It's still good as far as it goes, but did I mention the thing's 16 cm long already?
So the private doctor sent me back to the GP with a letter, and the GP referred me to the island hospital, who referred me to Tenerife. I have an appointment on the 20th. Meanwhile, every little twinge scares me.
Hi Starlady7
Sorry to read you story and the worries you have. My wife has Leiomyosarcoma though very different to yours but the issues you talk about around diagnosis are very usual.
I did a quick search on Tenerife and sacroma and came up with this page - very encouraging as it notes that there is a specialist centre. I only really knew about the ones in the UK.
It can help a bit to try to distract yourself before the meeting because no amount of worry is going to make things better and very worthwhile knowing when to get results of any tests etc so we also know what the next step is.
My wife has secondaries throughout her lungs so her treatment was chemotherapy - good news is that her cancer is stable and with a lot of support we now have a life living with cancer - six years and still going strong. Our GP is fantastic though and both her and I have priority access if we need it though of course try not to abuse that.
You might be interesting in looking at Living with cancer outside the UK forum as there may be some support available through that.
<<hugs>>
Steve
Hi again Sheila,
When we started on our cancer journey I heard the doctors talking to another patient and they were discussing palliative care - and I thought well that that for them then. As I got to learn more I discovered lots of people on palliative care live life quite happily because the treatment stops the cancer causing the problems that brought on a diagnosis in the first place.
When my mum died they discovered she had cancer, not that it was what she died of though.
It was really helpful to me when I finally decided I needed help - the next trick was finding it and when I first met a counselor for me I think I mostly cried for a whole hour and used a complete box of tissues.
I do find some real comfort messages in some songs, a real favourite is "He's not heavy, he's by brother" but really keen too is "Don't worry, be happy". The last one links as well to a great quote "Worrying does not take away tomorrows troubles, it takes away today's peace".
<<hugs>>
Steve
Hi Deborino
I very much remember our consultant telling us that sarcoma was often not very responsive to chemotherapy but in Janice's case they decided that it was worth a try.
The first drug they tried Doxyrubicin was perhaps rather more effective than was helpful as in killing some of the cancer cells it created a collapsed lung. After they had stabilised that they tried Gemcatabine and that knocked the cancer back and seems to have sent it to sleep.
If we look at the sarcoma uk site on LMS we can see surgery is first choice but radiotherapy, chemotherapy or clinical trials might be in the pipeline somewhere.
The idea with the 3 month scans of course is to catch any potential recurrence really early.
To answer the question of having cancer or not - it really depends on what works for you. We do have a guide on life after cancer treatment that might help.
<<hugs>>
Steve
