- I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..
Wednesday, 25 August 2010
As you know tomorrow is my hospital day, the day when I'm supposed to agree to radical life changing surgery, resulting in the removal of my rectum, anus and a new way of life with a permanent colostomy bag....
I've thought, thought and thought some more and I'm just not ready yet to agree to this. I've discussed this with family members and they understand it's not that I'm refusing - it's that I'm still not sure I have no other options and until I do know that for sure I'm not signing on the dotted line - just yet.
Yes, yes, yes I KNOW I could be playing with my life, I KNOW I'll probably end up with this surgery taking place but first I have to be sure there was no other way.
Mentally I will not be able to move on from this if I don't investigate all avenues first.
So, I've prepared a list of questions that I need answers to (see below) - I've decided that I want a PET scan prior to agreeing to surgery and then we'll take it from there I think.
How long have I had this cancer (approximately)?
What Stage was the tumour initially?
Was there evidence of lymph node involvement?
Was there evidence of the tumour going through the bowel wall?
Has the tumour reduced in size after having Radiotherapy? If yes by how much?
Does this mean it's been downgraded from the initial Staging?
Is there spread to anywhere else, particularly the lung/chest area?
Did the original biopsy results show either signet or mucinous cell adenocarcinoma? (these are subsets of adenocarcinoma and are considered to be agressive)
Did the pathology report show any lymphovascular invasion?
What's the difference between a PET scan and MRI/CT scans? (I already know the answer but I want them to tell me)
Why haven't I had a PET scan?
I did repeat MRI/CT scans on 10th but not repeat blood tests. Blood tests show the CEA (which is a cancer 'marker') why have I not had blood tests repeated since Radiotherapy?
What were my CEA levels back in April?
Do you have any results on my CEA from St Thomas' during Radiotherapy treatment?
Can I have copies of all my scan results, blood tests and pathology reports?
If I decided not to have the APR, how long would I live with the tumour as it is currently?
Are there any trials I could take part in if I refuse surgery?
How long does Radiotherapy continue to work in the body after treatment ends?
Do you think that someone should have told me about the long term pelvic damage caused from Radiotherapy?
Do you think that someone should have discussed the necessity of using a dialator to keep the vaginal wall open, before, during and after Radiotherapy?
Who would do this surgery if I agreed to it?
How many APR's has this person done before?
What is the reoccurance rate after this type of radical surgery?
What are the long term risks and also the risks to other organs during surgery?
My colonoscopy showed LOTS of internal haemorrhoids (piles) higher in the colon, I've since read that these can turn cancerous (in exactly the same way that polyps can)...if so what is being done/can anything be done, to stop this from happening?
If I had this surgery would it be keyhole or open?
How long is the expected recovery period? How long in hospital?
After surgery Intensive care Unit? Then general ward after how long?
What are the MRSA infection rates in this hospital?
I understand from reading numerous reports that pre-operative Radiotherapy can cause delayed healing and increase the infection risk following surgery by at least 60% - should we not wait at least 6 months for Radiotherapy effects to ease off first?
After which I'm sure they'll be glad to see the back of me for a while
Wish me luck ...