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did I or did,nt I

User
Posted 06 Apr 2018 at 21:23

in 2012 I weighed 11 s 8 lb, the weight started falling off me , I also had urine and diarrhoea problems, bowel blockage pains in my groin

lots of blood tests scans MRI ultra sound does this sound familiar to anyone.  I lost 3 stone

lost count of the clinic appointments and consultants I saw, one consultant said it could be cancer if it it its a rare one, it could be G.I.S.T.

he said the tests we will do will let us know, there are a few things going on in your stomach but i wont know till you are on the table,

I have NF1 neurofibromatotsis  people who have this condition are known to get Sarcoma cancer and G.I.S.T. so ive read is part of sarcoma and neurofibromatotsis , after the operation the consultant said  we have taken out 14 inches of lower bowel blocked and infected put stents in right kidney and removed your appendics as it was ready to burst,

since then ive had two opperations for sarcoma cancer in my right thigh and skin graft,taken all this into consideration i,m thinking that operation back in 2012  was for G.I.S.T. but has never been confirmed or ever discussed , the consultant may not have known what he was looking at meaning the sarcoma, I get xrays each time i go to Linda McCartney clinic, they keeping their eye on two spots in my chest

 

so sorry for the rant just feeling sorry for myself Ive had an open wound for six months now wound leaks slow to close because of the 30 yes 30 Radiology sessions i had clatterbridge in 2015

User
Posted 06 Apr 2018 at 23:56

I am really sorry that you have had such a dreadful time although many of the men on here will sympathise with you on the radiotherapy thing as the standard radiotherapy treatment for prostate cancer is 37 sessions (7 and a half weeks).

I don’t think there are any regular posters on this forum who have GIST - you may get more help on the Macmillan forums - see here https://community.macmillan.org.uk

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Apr 2018 at 20:15

Hi Lyn os Soren
many thanks for your reply I will try the macmillan site I,m in touch over benefits and grants for changes to the bathroom
sorrt forgot to say I am a 72 year old pensioner but spritely we walk everywhere as we dont have a car
kindest regards

 
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