Decision made

Steve
What a tough decision to make. I know it must have been difficult to consider such a surgery but I am very happy for you that you are working towards a cure. You are such a brave man. Holding you in the Light for a successful surgery and the strength for rehabilitation afterwards.
~Aud

steved said:

CharliesAngel
Thank you for the message. My tumour recurrence is actually in the lateral pels rather than in the sacrum. IT seems to have spread through the wall of the bowel initially or through lymph nodes into the pelvic area. The main site seems to be on the side of the pelvis in one of the pelvic muslces called the obturator muscle. It is pushing on the sciatic never as it leaves the pelvis to supply sensation to the leg. It is the site of the tumour that has meant the normal operation of a pelvic exenteration (just clearing everything in the pelvis out but leaving the legs) won't work as they will have to cut teh nerve supplying the leg and probably teh arteries that run along with it.

Sacral mets are a bit different and as I'm sure you know the level and site is very important in deciding if surgery is possible. I know little more about it or who does surgery for it. The Rob Pololock blog is the only one I have found for it- are his surgeons worth approaching? I also know that from a distance the Mayop is talked about over here as being the more radical surgical centre for these ops- they have done a few of the ops I am in line for but have never published outcomes (in fact a surgeon I saw here who worked previously at the May did say his experience was of poor outcomes and hence he doesn't recommend the op I am having- very sobering to hear!). Perhaps the Mayo is worth exploring?

Sorry to not be of more use- our situations have lot in common but ulitmately the potential ops are different- your father needs a sacrectomy rather tham hemipelvectomy but you do need to listen to the surgeons even if what they are saying is not what you want to hear.

I wish you the best of luck and if you want more info do feel free to PM me.

steve

Hmmm...
Hi Steve,

Oh my goodness, I can't even image what kind of pain you are having to deal with having a tumour in the sciatic nerve, I sincerely wish you all the best and hope your surgery is a real success... Can I ask, did you have radiotherapy?? Also, how long have you been dealing with this recurrence for?

I do apologize, I guess I'm so obsessed with my fathers sacral recurrence, I just assume that everyone who has a recurrent rectal met has it in the sacrum. What a simpleton I am!!

We live in Australia, so having to find surgeons in the USA and then travel all that way, my father has great difficulty walking now, and relies on a walking stick as his sacral nerves are damaged and he has foot drop etc. We have travelled to Malaysia for Cyberknife twice now, which has really helped with the pain, and has kept things at bay, however his CEA is rising and we may have to travel back for one last lot... You are absolutely correct about the level and site of the sacral tumours, his is in the S2 which only a few very talented surgeons would try and tackle, and he also at one point had L5 involvement, which no surgeon would touch (this has been taken care of with Cyberknife, however we have been told that this excludes him permanantely from ever having surgery).

Anyway's, please keep us all updated with your journey, you have a lot of us rooting for you!!!

Caroline
x

Praying
Praying it goes very well!

*hugs*
Gail