My husband had a radical nephrectomy for cancer on September the
14th. When we went back for the results, the hospital said the cancer was at
intermediate/high risk of returning but that he may be eligible for
participation in the SORCE drugs trial, taking Sorafenib or a placebo for up to
three years.
To our delight, he was accepted onto the trial and we were told he would then have a PET scan and further tests before beginning to take the tablets. (Back in October, I remember
reading online, the actual SORCE webpage, that the treatment had to be started
no more than 91 days after the date of his op., but I pushed this to the back
of my mind.) Yesterday, we went to get the tablets. We were told again of all
the side effects he might experience and he signed the papers. The professor in
charge of the trials said it was "highly likely" he would get the
drug as opposed to the placebo as, out of eight patients, six would be on the
actual drug. We were galvanised, ready to go. We walked out of the door towards
the pharmacy to pick up the tablets which might change my husband's life.
Suddenly our assigned nurse appeared - could we go back? We were then told that
because my husband was two days overdue to start taking the drug, he was now
ineligible for the trial and this decision couldn't be overridden. The
professor said it was completely their mistake.
We are devastated. I felt that this was my husband's best chance to prevent a
recurrence. Have other people had this experience? There is absolutely nothing
we can do. Why did I trust people who were supposed to be professionals? I had
the information on my computer - why didn't I say shouldn't this be started on or
before the 14th December? I am giving myself a hard time about it - my husband
is more sanguine. The good news is that he had a PET scan which showed
absolutely no sign of the cancer having returned and I comfort myself with the
fact that the hospital spent their money on this scan only to find they can't
give him the treatment - vindictive I know but I don't feel quite rational at
the moment. I am not giving the name of the hospital but it is world-renowned
with an impeccable reputation in a University city.
"Human error" my husband says. I am not so accepting and it will take
me a long time to forgive the people at the hospital who gave us hope then
cruelly snatched it away again.
