To operate or not to operate? – Adrian

Discussion Forum Discussion Forum Patients and experiences To operate or not to operate? – Adrian

This topic contains 5 replies, has 5 voices, and was last updated by  Helen_ammf 3 years ago.

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  • #9049

    The lewis leap
    Participant

    Re : Adrian DOB 29/10/65
    My Brother, Adrian was diagnosed with terminal bile duct cancer whereby the tumour was wrapped around the bile duct and was deemed inoperable.
    In June 2015 he started intense chemo of gemcitabine and cisplatin.
    In January 2016 a scan showed the tumour had reduced to “unmeasurable” on the CT scan
    Adrian continued chemo of two weeks on one week off on a lower strength of the same drugs for a further 8 weeks.
    He then had a scan which again showed the tumour to be “unmeasurable”
    Adrian was given a 6 week break from chemo but was plagued with temperature spikes causing him to be regularly admitted to hospital.
    A scan at the end of the 6 week break showed spots on the lungs and stomach lining (peritoneum)
    Two weeks later he started chemo again and has had 2 days of chemo over two weeks.
    During his week off he became extremely weak and had black tar like stools.
    When we went to see the oncologist he admitted Adrian for a blood transfusion and endoscopy.
    The endoscopy could find no internal bleed and Adrian remained in hospital for a week due to temperature spikes again.
    Two days before he was released his stools changed to a more normal colour but he has a bloated stomach and was in immense pain.
    The hospital got that under control and he was released just to be re-admitted the following day due to extreme stomach pain.
    An X-ray showed that the bowel was distended in two places.
    He currently in hospital and is nil by mouth. He has a drain into his stomach through the nose.
    It is believed that the blockage (which is not completely blocked as he passes Wind) is cancer
    His oncologist believes the blockage should be removed so that he can start chemo on a different chemo drug ASAP.
    The surgeons disagree and want to remove the tube etc and see how he gets on and if it happens again they will repeat tube drain and nil by mouth before considering any operation.
    We are now totally confused as to who is right.
    We would like him to not have a repeat of this stomach pain and to get on with chemo before it’s too late and the cancer spreads further
    I would be very grateful if you could advise us regarding whether an operation should or shouldn’t be done.
    I understand this is only advice as without seeing scans, examining him etc it must be very difficult but this would maybe point us in the right direction as we am starting to loose trust with the specialists and conflicting opinions/views and are very scared. Should the operation not be done whilst he is “reasonably fit” rather than wait until he is weaker, not having been able to eat property or his body function properly due to the blockages?
    Thank you Marie

    #9050

    Julie_ammf
    Moderator

    Hello Marie

    We’re so sorry to hear of all the problems Adie is having. Helen, who is currently at a conference in Chicago, has asked me to let you know that she has replied to your email, but in case you haven’t seen it, please check your junk folder.

    Kind regards
    Julie

    #9051

    The lewis leap
    Participant

    Hi Julie – thank you. I have just checked junk mail and cannot find anything in there unfortunately

    #9052

    Debbie_ammf
    Moderator

    Hello Marie,

    Please be assured that Helen will contact you, it may be that she is unable to during the conference, poor signal or locked in meetings but she will respond as soon as it is possible. 

    With our thoughts and warmest wishes
    Debbie

    #9053

    jclchung
    Participant

    RE: Adrian

    Just my thoughts here. I think there are 2 schools of thought. The oncologist wants to battle against the cancer with further chemo. The surgeons want to play things conservatively.

    If they remove the blockage how is this done? Is it surgically (assuming that the tube fails)? Surgery has its own complications and may be a contraindication for chemo until Adrian fully heals. Also is he strong enough to tolerate this?

    Both specialisms have to weigh up their decisions as to what is right for Adrian. 

    However, as family you all want him to get better and its easy to understand that you want to keep fighting the cancer tooth and nail. You have to weigh things up and ask whether its worth it. It sounds harsh for me to say but with such a prognosis there was always going to be an end point which we all put in the far distant future because we all remain positive.

    The spread to the lungs and peritoneum is not good news from a prognostic viewpoint (especially the latter). 

    Also he had complications during his “break” a sign that the chemo is hurting both Adrian as well as the cancer. As a family you, your other close family and the clinicians will have to decide which way you want to go with this, whether you keep throwing chemo at this or whether you take a more TLC approach.

    Its not easy but it needs to be decided in a rational way. 

    Sorry I can’t give you more upbeat thoughts on this situation

    Jeff

    #9065

    Helen_ammf
    Moderator

    Dear Marie

    Debbie has replied under your post about Adrian in the Introduction forum, but it might be worth repeating it here:

    We would suggest asking Adie’s consultants the following questions:

    A) for the surgeon:

    Is Adie well enough to withstand surgery?

    What is the surgeon’s reason for not wanting to carry out surgery now, but to go on with watchful waiting?

    B) for the oncologist:

    Have the blockages actually been diagnosed as cancer?

    If so, is this a spread of the cholangiocarcinoma or a new primary cancer?

    Knowing this might give a lead on the current approach to Adie’s care.

    We would suggest Georgina and Adie could also discuss with the oncologist getting a second opinion from someone who specializes in biliary tract cancers – and I will do my best to help you find a suitable consultant if you would like to take this route.

    With best wishes

    Helen

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