Chemo or not?

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Hi, I had a colonectomy 8 weeks ago for cancer in my ascending colon. 

I was told it was T3 with VI. 24 lymph nodes removed were all negative.

I have an appointment on Monday to see the Oncologist to discuss possible chemo.

Whilst I'm leaning towards saying no to chemo, I'm trying to keep an open mind. I'd love to hear your thoughts on the following:

What questions should I ask the Oncologist?

What has swayed you in your decision, either way?

Do you regret your decision?

I'd really appreciate your thoughts and experience.

I'm 74 yrs old - not sure if that changes the approach to decision making!

Thank you, and sending warmest wishes to all of you on this journey xx

  • I'm in a similar clinical situation to youself, 73F, having had surgical removal of a tumour, in my case in the sigmoid colon, 3 months ago. There were no signs of infection in the lymph nodes and the CT scan showed no evidence of spread so there was no obvious need or suggestion that I would need chemo. I've already had a CEA blood test, that was clear and I future monitoring such as repeat colonoscopies and CT scan is planned,

    My partner had chemo for a colorectal cancer 15 years ago (2 lymph nodes infected) and I know how nasty the experience can be so I wonder why they don't just monitor as they plan to do in my case?

    So the question to ask is clearly why they are thinking differently in your case?

    I suppose one possible factor is your tumour being T3, They never told me what mine was, but it might well have been less.

  • All the best with whatever you decide is best for you.I had a panproctocolectomy 5 yrs ago where the 60 lymph nodes removed were all clear.however I went for the chemo as in the future I didnt want to be thinking"what if"if it returned.capox is certainly not a walk in the park but is doable.

    Everyone is different and if you click on my user name you can read how I got on.5 yrs on and I have just been discharged from the colorectal follow up clinic so it was all worth it for me personally.

    But as I said everyone and everybodys circumstanses are different so at the end of the day its what is righr for you

    Kath

  • Hi  I presume it’s the V1 that’s leading the decision for chemo? Quite often the chemo recommended is in tablet form - capecitabine - over a 6 month period. My friend told me to accept everything I was offered treatment wise but I had lymph nodes affected and I was also 20 years younger than you.

    Its a personal decision but you could ask your oncologist how much difference it would make? You must also be happy with your decision and if there was to be a recurrence (hopefully not) then you wouldn’t be thinking ‘if only I’d had the chemo?’.If you are offered capecitabine then it tends to be a lot better tolerated than the chemos which include oxaliplatin. There’s always the option to give it a go and you can always stop if you find it too difficult?

    Hope this helps

    Take care

    Karen x

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  • Thank you Marjolica, yes that does become a question. The surgeon didn't mention VI when I saw him, just that the tumour was close to the edge of the bowel. My ct scans also showed that it was 'contained'. I learnt about the VI when I spoke to the CR  nurse, it came as a bit of a shock to be honest.

    Wishing you well x

  • Thanks Karen. I think age does make a difference.My daughter made the comment that I was on 'the cusp' ie ten years younger or older and it might be a clearer decision. There's some truth in that but it did make me laugh!

    I'm doing my best to keep an open mind. I read that VI can be identified in three stages but is hard to be precise, depending on the skills of the specialist checking the cells and the equipment available. According to what I read, the 5 year survival rate between these stafes varied between 50 and 90% which is a huge difference.

    Onward and upward. I shall be glad when Monday's appointment is behind me and I have made a decision.

    Thank you x

  • Oh Kath, I've just read your story. You are amazing and how fantastic to get over the 'five year' goal and be discharged.

    One inspirational sharing. Thank you  xx

  • I am mid 50's and had T3 colon cancer no lymph nodes. I had the option of chemo (capecitabine) and took it, 6 months. The side effects were mild to zero, slight feeling of sea sickness in the first month and loss of fingerprints and that was it. You could always start it and then if you are not keen on any side effects stop. I am glad I did it.

  • Thanks Phantomguzzler,

    Good to hear you've had little side effects. I think if I was your age I wouldn't hesitate, wishing you well as you move forward. 

    I have my questions written out now and will decide tomorrow or sleep on it if I have chance. It's not an easy decision.

    I'll keep you all posted xx

  • Hi Everyone, just to update.

    I had my oncology appointment week before last. The consultant basically listed all the possible side effects. He then told me that as a 74 Yr old woman I had around 85% chance of five year survival. The five year rate for my age and the cancer coming back (stage 2 T3 N0 V1) was something similar and chemo would only increase the chance of survival by three %. It seemed like a no brainer to me to turn down chemo, but I fully respect that this has to be a personal decision about what feels right for each individual.

    Had I had more Venous Invasion (is it invasion or intrusion?) and had lymph nodes been involved - or had I been younger - my decision would have probably gone the other way.

    Wishing well to all of you lovely people who are on this journey x

  • Almost 6 months ago I had an ILEOSTOMY because I had a very aggressive tumour - so no large bowel anymore, stuck with a permanent vile STOMA now. They suggested that I had chemo, in case there was still some CANCER present,which I refused. I now need to have an MRI scan for liver and spleen, because my latest CT scan was not clear enough,but showed there was something not quite right!! I have been having really bad back pain, worse when lying down, also pain in my stomach too. So, if I am told that the CANCER is back and spread to the liver etc. I don't think I can go there - losing your hair,dignity, also the pain that some of these treatments cause,damaging other organs in your body too and at the end of the day, why suffer even more,especially if the treatment does not work!

    Some people have good families which care, I do not. I get no help.

    It is entirely your decision.Heart