My surgeon confirmed that the CT and MRI scans still show no spread, which means this dodgy achy pain in my lung/chest area must be in my head and not a real pain at all....weird, because it feels real enough - but he is sure there is nothing in my lung.
He also confirmed that the Radiotherapy has made virtually no difference to the tumour, it is more or less the same size as it was in April......So all that burnt external skin, agonising pain, internal burns, shoving towels into my mouth to stop myself screaming out loud when trying to go to the loo was a complete waste of bloody time then! Great eh.....:-(
However it's not bigger than it was initially so I guess that's something to be grateful for at the moment. It was a T3 (Stage 3) in April and in his opinion nothing has changed.
And I now have to deal with the ongoing effects of Radiotherapy, constant need to go to the loo (weakened bladder) tightness in areas that were never tight and uncomfortable before, menopausal symptoms....but still the f^*king tumour is the same size as before (sorry for swearing, I don't often on my blog but hey today's a day when I just feel it's appropriate....)
He also confirmed that they believe there is limited lymph node involvement, at least one or two seem 'dodgy' - however they won't know for sure until they do the surgery, during this they will remove any lymph nodes that have been affected.
After surgery is when we get the full histology and pathology reports which will show exact stage/grade/lymph node involvement and anything else important such as signet/mucinous adeno carcinoma (which are aggressive strains of adeno)
Anyway, I told him that I'm aware that the MRI/CT scan show a mass but I would like a PET scan because that shows me that the tumour is still viable - he said he'd be happy for me to have that done to put my mind at rest.
I explained that I need to be in the right place mentally to go ahead with the surgery and not spend the next 5 years wondering if I should have checked...he agreed that I need to be right mentally to assist with healing etc. So that was good.
He also said he felt I should talk to someone who has already had the same op, who like me hadn't wanted it initially (I almost laughed at this point...is he trying to tell me that there's someone out there that actually WANTED this op?) because it would help me come to terms with it...
I agreed to this, as long as it's a female of a similar age (no much point in me comparing notes with a 78 yr old male really)....
So, with the surgeon it was decided that he would arrange a PET scan, and get me in touch with someone locally who has had the APR reluctantly (yes, keep me away from those 'willing' ones) then I would come back to him and we'd organise surgery dates.
I can't say I left him feeling 'happy' but I felt more positive about the direction this has taken and felt that if the PET scan shows activity then I can do this surgery with his help.
After that we met with the colorectal nurse who decided that I needed to know that the other hospital may well refuse me the PET scan!
I was quite taken back at this and pointed out that the surgeon had just told me this shouldn't be difficult at all.....suddenly it IS difficult. I told her I can't commit to surgery without this scan, she repeated they may not agree to it and she felt she 'needed to warn me' in advance....
Yeah right, why let me leave feeling positive just for once eh!
She then said she'd try to find someone to talk to me about the APR, she'd see what she could do....
By now I just wanted to leave before I said what I was really thinking (which was, don't bloody put yourself out too much - it's just my whole life that's going to change, why make any effort to make it easy for me)....so before I lost it, I said I wanted to leave now and that's what we did.
Rab was great, he said 'Listen to what the surgeon said....it shouldn't be difficult to arrange and I'm fine with you having that scan then we can move forward'....Just ignore what she said and wait to get the appointment.
I know he's right but all I could think about afterwards was 'You might not get this scan, it's unnecessary and we might not be able to organise it for you'....
Oh and the surgeon also said I'm going to need intensive Chemo after surgery as well because there's enough evidence that it could reoccur and therefore Chemo will be necessary regardless of side effects. Great, can it get any better!...
We talked about rates of this type of cancer (rectal) coming back either in the same place or mets to liver/lungs/bones.
He said after APR there is approximately a 10% chance it will return to the same area on the scar tissue - with a 50/60% chance of mets to the liver/lungs/bones/pelvic area but they'll monitor me on a 5 year plan and hopefully catch anything as it turns up.
I do know I'm going to have to do this surgery but I'd still like the PET scan first - that way I'll have no question mark hanging over me.
I'll know then that I did the only thing I could do to give myself the best chance of kicking this thing up the arse!
We did talk about what exactly would happen if I decided not to have surgery and it's not really an option. I couldn't justify allowing Dj to witness *that* happening to me - not when I could have had the surgery to avoid it.
I'm glad Rab was with me today - he's calming to be around, keeps it all simple and doesn't let me move to the next step without finishing the last.
Hence my 'I won't get the scan' comment is immediately followed by him saying 'Yes you will, the surgeon said it shouldn't be difficult...No point in rushing ahead - just have the scan first'.
