My name is Ben, I am 39 years old and I was diagnosed a few months ago with Stage 2/3 low rectal cancer. At the time, the treatment plan outlined to me was initial 6 week neo-adjuvant course of chemo-radiation, followed by APR surgery, followed by 4 months of adjuvant chemotherapy.
I have just found out that I have had a ‘complete response’ to the initial chemo-radiation treatment (based on PET and MRI scans taken 6 weeks after last radiotherapy session) and now I am trying to decide whether to go with the standard recommended approach of having APR surgery and permanent colostomy or whether to go against the surgeon’s recommendation and ‘wait and see’.
I have done a lot of research online and there are a number of studies where they have had excellent results with a non-operative approach (along with stringent follow-up involving regular MRI, endoscopy etc), particularly the Habr-Gama research in Brazil and the study done by Maas et al in Holland, so I am certainly tempted by the option of deferring surgery. This article gives a good overview of the current situation: http://www.cancernetwork.com/oncology-j ... r/page/0/3
It seems like this approach is gaining momentum and my gut instinct tells me that if they can make it work in Brazil/Holland/UK, then they can make it work anywhere else where they follow the same protocols.
I am really confused at the moment as I don’t want to go against the surgeon’s recommendation but equally I don’t want to have such invasive surgery if it is not necessary. I know that if I have the surgery and then my pathology comes back clean, there is a serious chance that I will resent the bag and be resentful of the choice I made to go against my gut instinct in favour of the 'safe' option. Whilst I am sure that I would adjust to life with a stoma, I do not want to live the rest of my life with a little devil on my shoulder telling me "you didn't even need this bag" every time it gets on my nerves.
I am particularly interested in the current trial being conducted at the Royal Marsden Hospital in UK (http://www.pelicancancer.org/index.php/ ... gery-study
) and I am trying to decide if I would enrol in this trial if I was in the UK. I think I probably would if it was offered to me, so does that not mean I should follow my gut and take the same approach here, even if it means going against the surgeon's recommendation?
The crazy thing is that I am far more stressed out now (with 'no detectable disease') trying to make the correct decision than I was when I was first diagnosed!
I think the simplest thing would be to just switch my brain off and say "yes doc, whatever you say doc" and never question it again... but unfortunately I don't seem to be wired like that.
Is anyone else in a similar situation?
Thanks a lot,