Anxiety levels through the roof

Hi Karen,

Sorry I cant help. But Im sure there will be someone on the site who will be able to help.

Look after yourself.

Take care and be safe Big Hugs Love Sarsfield.xx

I'm not qualified to advise you but suggest you 'phone one of the nurses on this site. They're really helpful.

I also know someone who may be able to help you and will send them a message.

Best wishes,

KateG

Hi Karen

KateG sent me a message as she thought I might be able to help.

I had a similar experience last year. I was diagnosed with angiosarcoma (a form of soft tissue sarcoma) in 2008 which manifested in my breast. Following a mastectomy and radiotherapy I was clear for a year when a lump appeared on my back, which was removed. Last summer I was rushed to A&E where I had a bowel resection, but they had also found multiple mets on the liver.

Now I am not telling you this to frighten you even further, but to reassure you that at every stage I have had the best possible treatment. Nearly everyone here panics as they wait for appointments, results, consultations etc., but knowing is never as bad as waiting.

There is a specialist sarcoma group which has more specific information which you may find interesting/supportive, SARCOMA UK (sorry can't remember the web address offhand but it should come up if you put it into google etc). They have information on GIST as well as other soft tissue sarcomas.

If you want to get in touch, please send me a private message. I'll be thinking of you as you wait.

love and gentle hugs

Sharry x

Sharry

Thank you for your feedback and I will contact Sarcoma UK.

Ever since my primary diagnosis, I have been aware of the possibility of Mets, and for the past 18 months have been back and forth to hospital with stomach problems, but all tests have come back ok.  However, I have continued to feel really lethargic, and in quite a bit of pain.

My arm on the other hand (excuse the pun) has come as a bit of a shock, as although I found the lump about a year ago, it was about the size of a seed pearl and I had no pain in the area, so wasn't in the least bit worried about it.  But over the past year, it has grown and is painful and my arm aches so much.  I had put this down to RSA, as I type for a living or to the fact that the rest of my body is so painful and aching, but not to the fact that this could be something nasty!

So why am I anxious, I ask myself? and this is what I can't answer.  I have after all, 'been here and have the 'Zipped' tee shirt to prove it.

Thank you once again for you kindness and KateG, thank you for forwarding on my message.

Love to all

Karen xxx