About Me

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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, 8 September 2010

So..What Next Then?

Today I did nothing much until my appointment time....

Met with my surgeon this afternoon and he said that there was some good news but not enough of it, to stop it from being bad news ....

The PET scan showed that the Radiotherapy HAD reduced the tumour but unfortunately not enough.
However, the MRI had showed virtually no change at all - so I'm glad I had the PET done as it showed the true picture.
It also confirmed that there is definitely no spread to the liver or lungs and the strange ache really must just be a 'all in my head' pain...

So, the tumour is smaller but not small enough. However it's smaller to remove and hopefully that'll mean that he manages to get it all during surgery.

We then moved on to discuss surgery...he initially said he would like me to go in and have the operation next Tueday (14th September) but then we discussed my worries about the Shingles virus being fully suppressed before surgery and also numerous reports that I've read that discuss healing issues after pelvic Radiotherapy treatment.
He agreed that healing is an issue after Radiotherapy to the pelvic region and he said that he's happy to wait a couple more weeks in order to provide me with the best chance of healing and hopefully avoiding 'further issues' (further issues involve further op's...not a road I really want to travel if I can avoid it)
I then said that I would contact my GP and discuss anti viral treatment to see if we can get the virus to behave before the op, during the op and definitely afterwards. My surgeon is concerned that if it re-flares it will interfere dramatically with the healing process....sigh.....

We then discussed the operation in (gory) detail.
The short version is my surgeon hopes to be able to do this procedure via keyhole surgery, he expects it to take approximately 6 hours and during this time he will remove the anus, rectum, tumour, lymph nodes, and approximately 15 inches of colon, provide me with a permanent stoma, stitch me back up and get me into Intensive Care for a day or two then moved to HDU (High Dependency Unit) and then finally onto a general ward for approximately 10 days.

My surgeon then informed me that depending on what they find in pathology tests after the tumour is removed, I may require a 3 month course of intensive Chemo BUT he also said 'We'll see after surgery, it may not be necessary' ....
So I'm holding onto that for now - 'may not be necessary' is better than 'definitely will be necessary'...

He also said I will be monitored for 5 years after surgery - this will include 6 monthly scans, blood tests, colonoscopy's and any other tests that they deem necessary during this time. The idea is that if anything else decides to appear they'll catch it quite quickly and be able to make fast decisions about possible treatment plans.

So, I've explored all my options...I've researched everything I can...I've read papers until 3am and used a medical dictionary to work out what they mean......I've weighed up different scenarios.....and I've now decided that I have to go ahead and have this operation and live with a damn colostomy bag....and just hope that it doesn't come back somewhere else!

Do I want this? No....but then I didn't want f&$king cancer either - that's just the way it goes I guess.


  1. *'normous hugs*

    Ok, so you've explored every avenue you can and weighed up all the options. The end result is that you are going to have the operation. Yes, it's a horrid idea and it's going to be difficult to come to terms with life post op BUT (no pun intended!) the tumour HAS shrunk, and there is NO SPREAD, which means you have the best possible chance of beating this! And if anyone can do it, you can!!

    Love you


  2. Oh yeah . . . as to the "So, what next then?" We go and have that afternoon tea at the Wolsley.


  3. No spread is great news, tumour shrunk a little is good news, operation is sad news. However you have explored all options and it will not be carried out for reasons of "just in case"
    So well done sis for all your hard research. One often cannot cope with such dedication to finding out more about this illness. You have not only helped yourself, you have helped and continue to help many others with your strength and knowledge. I love you so much sis, gosh I wish I wish, there was another way. But to know that you have a good chance of fighting this having the operation gives me some peace of mind.
    Its still a very sensitive subject, but in time hopefully there will be humour too as life is too precious to be sad.
    hugs and love you lots sis, also big hugs to DJ, James and Rab, love you all too xxxxx

  4. No stone unturned there!!
    You have a long road with quite a few bumps but you will get there,I have the greatest of faith in you.Stay strong
    Rose xxx

  5. LOVE your new motto!! And the little illustration is perfect - just in case we didn't quite know what you meant!
    Hope you're ok today. Its been quite a week for you and many of our pals on the forum.

  6. A shining light that will not be dimmed by cancer!

    T xx

  7. I guess in the run up to the op an extra big hug won't go amiss.

    David [X]