Refusal to offer chemo

My dad has advanced bowel cancer which has spread to lungs and liver.  These smaller tumours have reacted well to chemotherapy and are stable but the main bowel tumour hasn't.  They attempted to remove this in October however this was unsuccessful as it was too close to major blood vessels. 

He hasn't had any chemo since January and things were looking positive until he had bloods in July which showed his cancer markers had shot up to 800.  This is when the decision was made to operate.  When this didn't work, we were keen to get him back on chemotherapy.

He had an appointment on Monday with his consultant but has been told that he cannot start chemo again until there is a clear sign of progression or he becomes more symptomatic to indicate things are changing.  His most recent cancer markers came back as 625, so this has reduced slightly, however this is still significantly raised since earlier in the year.

Why is chemotherapy not available until it is possibly too late to work.  We know this is incurable, however surely a cycle of chemo would be beneficial to try and keep any growth at bay.  To wait until the inevitable happens just seems crazy.  Is this normal practice, especially when cancer markers are so high?  His markers went from 86 in February to 800 in July and now to 625.  Why would these go up so much and then start to come down again without treatment?

Sorry for the long message!

  • Hello and thanks for your post,

    I am sorry to hear about your dad.

    It is difficult without being involved in your dad's care to explain his doctors treatment decisions. I am not sure how much treatment your dad has had in the past. Sometimes doctors do decide to give a patient a break from treatment and this allows blood counts to return to normal. It also means that when and if the cancer returns the doctors have chemotherapy in reserve that they can treat him with.

    When chemotherapy has been given for a long time some of the chemotherapy drugs can become resistant and not work in the same way. There have been various trials that patients have entered with advanced colorectal cancer where they have compared active surveillance versus  treating patients and they have found that there can be very little in terms of the survival of a patient.

    It does mean that if your dad is not having any side effects and the cancer does not seem to be growing it may be a good idea to give him a rest from treatment. It does give your dad a chance to have a break from treatment without having side effects such as tiredness.

    If your dad has not had it explained to him by his doctors as to why treatment has been put on hold for the time being then it may be a good idea to discuss this with his bowel cancer nurse or his oncology doctors. There is always the option of a second opinion if that is what he would like to do. We have some information on how to go about getting a second opinion which you can see here .Your dad could also discuss this  decision with his GP. The hospital will have written explaining about any treatment decisions.

    If you or your dad would like to ring and chat through any of this with one of the nurses on the helpline then you are welcome to give us a ring. Our helpline number is Freephone 0808 800 4040 and we are here Monday to Friday 9 am to 5 pm

    All the best,

    Catherine

  • Thank you Catherine for your reply.  We are hoping to receive his CT results today so may find out more.  

    He had 12 cycles of FOLFOX between Aug 21 and Jan 22 and in July 2022 - Jan 23 he was on FOLFIRI.  He hasn't had any further chemo.

    It just seems a long time without any kind of treatment when we know there is a large tumour just sitting there that hadn't reacted as well as the smaller metastases.

    I can't help thinking that once progression is seen again, it could be too late.

    Do you know why his cancer markers would increase as much as they did, from 86 to 800 in 6 months and then start to decrease again?

    Thank you for your help

  • Hello, and thanks for getting back to us again,

    I am afraid I don't know why his markers have increased and then decreased but do encourage your father to ask his team. They have access to all his medical notes and can identify any trends in the markers and his scans. Hopefully as you say they may have more information from his recent scan.

    If your dad is concerned about not having treatment then do encourage him also to talk this through with his team.

    I can understand uncertainty can be so difficult. I hope that you are all managing to get some support from friends and family.

    Do give us a ring if you want to talk through any of this through. Our helpline is Freephone 0808 800 4040 and the nurses are here Monday to Friday 9 am to 5 pm

    All the best,

    Catherine