Not a good day
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Thank you all. The Oncologist got the 11 months from the ABC 02 trial results. This is the Chemo my Dad will be having Gem/Cis over a 3 week cycle.
I did tell him my dad was not a statistic and that i wasn’t interested in hearing months as i’d been on this forum and heard survivor stories of years. He did seem rather shocked. I then said could I have the scan and reports for a second opinion and he said yes. My Dad wants to wait and see what the doctors at the hospital say at the QE Bham first though as they were the ones who told us this treatment was successful, my dad was fit and the tumour was small. We see them tomorrow to discuss the EUS/Biopsy results.
The problem is that whilst the QE deal with my Dads CC, we have to go to the local hospital for Chemo, this was the hospital who told my Dad there was no treatment and he had months to live in April.
Will let you know what the QE hospital say tomorrow.
Hello Andie and so sorry to hear about your Dad’s diagnosis. Why 11? I agree with Kristin that was strange. With that said unfortunately this CC does not know ages, genders, nationalities, it is very polite that way. Everyone has different results with the various treatments and the only thing we know for sure is we know almost nothing because of it’s rarity. We do however tell people that they are entitled to a second opinion and a third if necessary. You should ask this doctor if he has treated many CC patients. I know we have a whole club on here from the UK and I am sure they will check in and give you some very good advise. Hang in, I know it’s tough when you feel like you are going through this all alone. But we are here and you are not all alone.
11 months?? How on earth did he come up with that number– with a crystal ball? Doctors are not God, they can’t say how long we will live. At one point I was told I had 6 months– and that was almost 4 years ago. Please tell your dad that there are many, many people on this site who have lived far longer than anyone ever expected. And many people have done well with the chemo that he will be having.
Wishing the best to your whole family–
Kristin
Hi Andie
I am sorry you are having such a negative experience with the so called experts but maybe it is a UK thing…. My mum and I are going through the same thing. Wherever we go they are always saying how unresponsive CC is to chemo and radiation and that basically there are no other options.
It gets me mad too !
I started talking to the Oncologist today about cyberknife and second opinions and he was actually a bit more positive than some of the others we have seen.
As people on here have said before, there is no date stamp on us, so saying that your father has 11 months is not the end of it. If your oncologist is not fighting for your Dad then maybe you can try and find one who will be more open to trying different chemo etc.
Stay strong and look after yourself.
JemimaWent with Dad to see the Oncologist. Biopsy showed it is CC and it is contained in the bile duct but inoperable due to blood vessels etc (which we knew)
The oncolgist didn’t seem very hopeful about the treatment my Dad will be having saying “You do know we can’t cure you, you have about 11 months” At this point I saw red and said that I’d been on this site and there were survivors on here that had also been told months and that my Dad wasn’t some statistic! I think he was very shocked by this.
My Dad looked so vulnerable when he was told this and I’m angry that he said this, surely he should be more positive. When I asked what would happen if the Gem/Cis didn’t work he said there is nothing else to try.
Dad will be starting his treatment 18 June. I have told my Dad about this site and the people on it and he seems to have brightened up. I feel so numb and useless. We haven’t told Mom that the Oncologist said 11 months as she would not cope, so I am having to keep this to myself, I just hope I can find the strength to keep positive.
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