re did not get very good news

[Guest guest]

Hello CJ,

6 WEEKS AGO I WAS TOLD THAT MY DOCS HAD FOUND A MASS BIGGER THAN 3CM IN MY LIVER AND THAT I HAD ABNORMAL BRUSHINGS .

ATYPICAL BRUSHING RESULTS. OR SOMETHING LIKE THAT.

I HAD PET SCANS, MRI SCANS, CT SCANS. AND ULTRA SCANS.

I WAS IN HOSPITAL FOR A WEEK.

AT THE START OF THE WEEK I WAS CAUTIONED THAT THE MASS WAS BIGGER THAN 3 CM AND THEREFORE OUTSIDE THE MAYO PROTOCOL AND THEREFORE NO TRANSPLANT.

BELIEVE ME I KNOW HOW YOU FEEL.

MY BRUSHINGS WERE ALSO SENT TO THE MAYO HOSPITAL FOR FISH TESTING.

I LAY IN THAT BED FOR 5 DAYS WITH A FEELING OF TERROR AND SEEKING ANY THREAD TO TRY AND ESCAPE THIS SITUATION.

I WAS ALSO CAUTIONED THAT I MAY HAVE HAD AN UNRESTEABLE TUMOUR.

IE NO CUTTING OF ANY SORT.

THE MAN IN THE BED BESIDE ME HAD BEEN TOLD HE HAD BILE DUCT CANCER THAT HAD SPREAD OUTSIDE HIS LIVER.

THE MAN IN THE OTHER BED HAD BEEN TOLD THAT THEY HAD FOUND CCA ALSO.

THE FOURTH MAN IN THE ROOM HAD BEEN TX FOR CCA.

MY FISH TEST CAME BACK NEGATIVE , AND THE 3 CM MASS TURNED OUT TO BE FATTY AREA (SO FAR).

MY DOCS HAVE TOLD ME THAT I AM MARGINAL .

AT THE MOMENT I AM BEING BRUSHED EVERY 2 WEEKS OR SO AS THEY ARE VERY SUSPICIOUS THAT I HAVE CCA OR ABOUT TO TURN TO CCA.

IF/WHEN THE BRUSHINGS COME BACK POSITIVE THEN ITS THE MAYO PROTOCOL AND HOPEFULLY A TRANSPLANT.

I CAN FULLY UNDERSTAND THE DEPTS OF FEAR AND DEPRESSION /TERROR YOU ARE EXPERIENCING.

BE VERY GLAD THEY ARE OFFERING YOU A WAY OUT WITH THE TRANSPLANT.

FOR 5 DAYS I THOUGHT I WAS GONE

I AM A 44 YEAR OLD MALE AND I CRIED LIKE A BABY.

I AM WAITING ON A PHONE CALL FROM THE HOSPITAL AT THE MOMENT FOR THEM TO TELL ME THAT THEY HAVE A BED AVAILABLE FOR ME FOR MY NEXT BRUSHING AND THEN THE WAIT.

(FOR THE RESULTS TO COME BACK FROM THE IRISH LAB AND THE MAYO HOSPITAL).

THIS IS EVERYBODYS NIGHTMARE WITH PSC.

YOUR IN IT AND AND I THINK I AM NOT FAR WAY EITHER.

YOU HAVE BEEN OFFERED A WAY OUT GRAB IT WITH EVERYTHING YOU HAVE

GARY O B

Dublin

Ireland