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, 25 August 2010

Shouldn't be difficult......

So, as you all know today was Hospital appointment day. Time to discuss the recent MRI/CT scans and surgery 'options'.

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 said 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....

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 everything else 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'.


  1. So Sorry love it didnt go well today , but you are doing the best thing to find out for sure that it is the only path that you have to go on , you will get there love and we will all be there with you ,love you loads xxxxx

  2. It wasn't as bad as it could have been Mum....I'll get my head round it all bit by bit.

    Like I said, I know I'm going to have to have the op now, it's just that I've got to get into the right place mentally first.

    That way I'll accept it rather than just spend the rest of my life feeling angry and bitter. Acceptance first then just get on with it I guess.

    I'll get there so don't be worrying too much about me.
    Love to you both xxxx

  3. Also meant to say....'all be there with me'!! ....

    Hope you don't all think you're coming into the theatre for a good nose around while they're chopping me up....:-))

  4. Carole,

    I have noted a real shift change in your attitude of late...

    You are in new territory now as my op was a LAR and I hate to say it less invasive. However my staging was Dukes C2, T4, N2 and MX, which I am sure if you have looked at the sites on the internet (like we tell people not to do) is not too good for chances of a return...but hey we will deal with that if and when it comes - 'Don't borrow trouble until it comes' :-)

    The lymph node involvement will make all the difference in the final staging and the chemo..mine was N2 which means 4 or more regional nodes involved and like you said that will be determined after surgery. I am sure you are aware they remove a reasonable number and look at them all to see if they are impacted...they removed 37 of mine and 11 were 'involved'. I still do wish I could have had the chemo although the remark about 'whatever the side effects' would have killed me stone dead with a heart attack so hoping they can control the infection you got.

    My staging was stage IIIb and I am praying that when they look at those lymph nodes all will be well, which will put you in a good position as a potential IIb, that is what I will visualise and pray on...although ultimately we all pray for it to dissapear in a puff of smoke...

    Stage I (T1,T2, N0, M0)
    Stage IIA (T3, N0, M0)
    Stage IIB (T4, N0, M0)
    Stage IIIA (T1,T2, N1, M0)
    Stage IIIB (T3,T4, N1, M0)
    Stage IIIC (any T, Any N, M1)

    Again we tell people every day don't consider the stats, but it is so hard when you see a figure hanging over your head...although generally I am doing great I feel like I am like a walking time bomb.

    I love your attitude and wished that I had looked into it further although I guess the fact that there is not a chance of a reversal kind of crystallises the mind. I do still consider myself lucky as it could quite easily have gone either way due to the invasive nature and low down position...

    I am going to stop as need to sleep...hope the fish food is going down well :-)

    Remember your glass is half full, the tumour has not got any bigger, gotta be worth a celebration.

    Speak soon

    T xx

  5. Hi Tony,

    Fish food is dire, but I'm persisting with little at a time.

    Yes, my glass is half full - I'm working on it.

    The stat's above are useful, thanks. It'll save me looking them up again after I get the full path results.

    I talked with them about side effects/chemo and my surgeon seems to think they can give me a different Chemo that may not cause the same side effects as last time.
    Did you get any advice on that at all, something instead of the Xeloda?

    Talk soon, xxx

  6. Hi Carole

    if you'd like to discuss anything that I've not waffled on about in my blog or have any questions, I'm happy to answer them. I'm a patient voice for beating bowel cancer, so as well as doing radio/tv interviews I have been in touch with recently diagnosed patients.

    I hope you get your PET scan.


  7. Bravo sis! You are the smartest, bravest and despite how you think you feel, I think you are also very positive. Even with all these questions you had, this is a positive thing in itself. Well done for picking the pieces up on this one as it was probably an extremily difficult appointment. Sooo happy that the chest pain was not what we feared. Moving onwards and upwards then.
    I'm in bed with 2 day migraine again, but had to go online to see your blog! What a family we are eh! LOL!
    The pain in my head seems to have eased knowing that you are OK with all of this. Catch up later hun xxxxxx

  8. oh, also meant to say, Big hug to Rab for the right words at the right time. xx

  9. HI Carol,

    Rab sounds like an ideal comapnion to have on a day like today, and I have to say I agree with him. Go with what your consultant says. The nurse you spoke with sounds very negative, and the last thing you need right now is negativity.

    I have to say, at the moment my house is a complete tip! And the blame for that stands totally at your door! I seem to spend all my "spare time" on here reading everyone's blogs. They are informative, fascinating and sometimes very funny. I admire the lot of you!!

    Lots of Love

    Clare xx

  10. Hi Lisa,

    Lovely to have you here....am sure I'll be picking your brains before long.

    Also glad to hear you're getting back into updating your blog too.
    Just a huge shame that it wasn't for different reasons :-(

    Carole xx

  11. Sis, rest your head and please don't worry too much about me. I'm honestly OK with all this now, got to the point where I know what I've got to do just going to tie up the loose ends first - then full steam ahead.

    Concentrate on shifting the migraine and catch up with you when you're feeling much better.
    Love ya loads lil sis xxxx

  12. Hiya Clare,

    I'm so sorry your house is a mess now...

    This is what I think you should do to solve it, open a big (walk-in type) cupboard, throw everything inside and put a chair in front of the cupboard so no-one looks inside, then go back online.
    That way you're tidy, organised and have free time - win, win situation eh ;-))

  13. sorry to hear it wasn't better news Carole, but glad rab, was with you to give you the right words of wisdom, you will get your PET scan, and be ready to face the next step.
    lots of love xx

  14. First of all, can I say a HUGE well done to Rabah who has really come up trumps these last few months. I'll be honest, I wasn't sure how he'd cope with you having cancer but he's exceeding all expectations and I, for one, think he can be proud of himself for the support he's given, and continues to give, you.

    Secondly, I'm glad you've now reached a decision. I can't say I didn't care what decision you came to (well, I can but I'd be lying!) 'cos I'd have supported you either way. The most important thing though was that you came to your own decision without allowing yourself to be blindly led, bullied, or otherwise persuaded into anything - not that it was likely you'd have done otherwise, but the stresses you are inevitably under can lead people to behave in ways they might otherwise not.

    Thirdly, Chemo: can it get any better? Of course it can. All your hair could fall out and you'll get the chance to wear a series of different hair styles and colours courtesy of the 24hr wig shop on the Goldhawk Road (old TV Centre catering joke there!).

    Glad to know you're ok-ish now the 'big meet' is over. Tell the colorectal nurse to go stuff herself in a wheelie bin for 15 hours!

    Love you. Almost as much as my cat! xxxxxxxxx

  15. Listen to the organ grinder not the monkey,who does she think she is telling you negative stuff when you have finally found a surgeon to help and agree with you.Glad the chest results were good.Sending so much love your way.There are a number of different chemos that they can juggle with so one will be suitable.
    Keep strong,big hug.
    Rose xxx

  16. Thank you Rose,
    it did really throw me for a moment when she started waffling on....Just for ONCE I really wanted to leave there feeling positive and like 'I CAN do this'...
    If they do refuse me the scan I'll tackle that one when it happens - sod the monkey for now :-)

    Lou, thanks as always for the ongoing support. I know you've always had faith in me to do the right thing for me eventually - and I always knew that no matter which direction I'd taken, you'd have been there for me - as you always have been.
    Much luv xxxx

  17. Thank you for sharing your blog. I see you also have posted on my blog. I am in the same situation as you. I do not want surgery at all. It scares me so and can't imagine my life recovering from it and living that way at my age. What did your dr. said the outcomes are from people who just do all the chemo and radiation but no surgery? Does anyone not do surgery?? 50/60% that it goes someone where else after APR is a horrible rate! Can you tell me more about a PET scan? I haven't had one only a CT. How is it different, what can it tell me?
    Thanks for any info you can provide my chemo dr sucks and I don't get to see the surgeon for a long time from now.

  18. Hi Me :-)
    Can you email me directly on dizzie2009@london.com and I'll go through all the above stuff with you in more detail and see if I can help you....
    Carole xx