I had my tertiary referral on Monday.
This is nominally a “second opinion”, which sounds as though I have no faith in my existing consultant. Actually, nothing could be further from the truth. This is actually an opportunity for me to get a leading expert in difficult cases to take a look at me and my problems, and then discuss them with my consultant, to make sure that between them they have considered all the options, and agree on the best course of action.
Of course, there could be the interesting situation where the tertiary specialist has applicable specialised skills and experience that my consultant lacks, in which case they may end up recommending that he carry out the procedure instead. But in general I view this as a chance for my consultant to get a second opinion, not me!
Overall however, the appointment was not terribly positive. I’m described as being rather “painted into a corner”, which is to say that my options at this point are rather limited. Much of the discussion centered around my views on quality of life, and how I viewed life with a colostomy, versus life with (probably) continued problems from a less than perfect anastomosis.
On that at least, I can be very clear with the medical profession; I adamantly view moving to a permanent stoma as being my absolutely last resort. If I have to go there for medical reasons then so be it – I’ll cope. But I would have to see my current quality of life diminish significantly before I would choose to move to a stoma by preference.
I view my current quality of life as pretty good. Sure, it could be better, and it’s not what it was before I had my cancer, but I am still able to function well in the normal world. Whereas my experience of being on a stoma was far less pleasant, and certainly didn’t allow me to do all the things that I currently can. My consultants hold up an idealised view of the perfect existence with a stoma, and it looks good. But there is no guarantee that that is the experience I would get. For me, it’s just not worth the risk.
And so we come to my treatment options, which revolve around resolving the abscess, using various surgical techniques, some of which are relatively new and untried, but hold out great promise, but at the cost of potentially making the recovery period quite difficult to endure. Ultimately I need to wait for my consultants to discuss the options, and then I need to understand the implications in a lot more detail before making my final decisions.
On the good news front, having now reached approximately two years since the surgery with no signs of recurrence of the cancer, the odds of it recurring are now reduced by 80%. So, with my treatment plan the chances of my cancer recurring were originally about 20%. That 20% has now dropped by 80%, to about 4%.
Clearly there are no guarantees, but it seems like those odds are starting to look good.