Advice regarding my Dad - Large mass in abdomen

Hello.  My best wishes to everyone here, especially to those suffering at the present time.

In autumn my Dad (77) started suffering with very significant amount of bloating and trapped wind.  As a result he'd started eating slightly less than usual and underwent an endoscopy in November which showed the presence of H.Pylori and mild gastritis for which he was prescribed antibiotics and a course of PPI.  This failed to solve the problem.  He had a number of blood tests throughout December which showed he has anaemia caused by problems with his iron uptake and vitamin B12.  He then had CT Scan at the start of January which has shown a large mass that is displacing part of his small bowel and compressing the inferior vena cava, along with a 12mm lesion of his left kidney.  He is due to have a needle biopsy next Wednesday on the large mass.  As you can imagine we were absolutely devastated to hear this and we're very worried about what the future holds.

Since maybe the beginning of December he has been eating a significantly reduced diet because of the intense bloated feeling and has lost over 1 1/2 stone.  When he was well we would walk every day for at least 2 miles but now he is finding it very tiring to go more than 200-300 yards.  I know these are not good signs and next Wednesday seems a lifetime away right now.  My main question is should I be doing more to inform the doctors about his current condition?  They know about his weight and have prescribed some high calorie shakes but when we saw the doctor that performed the endoscopy on Monday and he seemed to be under the impression that my dad was still capable of walking a couple of miles each day.  I'm desperately concerned that we haven't got all of the information over clearly and that I should be doing so much more than just caring for him and hoping that Wednesday comes around quickly.

Thanks for taking the time to read my post.

Andrew

  • Hello Andrew

    I'm so sorry to hear about your Dad's diagnosis and the decline that you've seen in his health over the past few months. It's understandable that you have concerns about this. 

    Was your Dad given details of a clinical nurse specialist that you could contact for advice and support? If so then I'd suggest giving them a ring and updating them. How is your Dad getting on with the shakes that he's been prescribed? 

    Unfortunately, it's not uncommon for doctors to not have a full and up-to-date picture of a patient's day-to-day health particularly when things are changing fairly rapidly and especially if your Dad is seeing different doctors as part of the diagnostic process. 

    If you've not been allocated a nurse that you can contact in the meantime then don't be afraid to speak up at the appointment on Wednesday and let the team know how much your Dad has deteriorated. Hopefully they will be able to give you some advice and support. 

    If you want to talk things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

    Let us know how you get on next week. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi Jenn, thanks so much for your reply.

    My Dad has been doing pretty well since I first posted.  He is enjoying the shakes, eating better and is seems able to manage the problems he is having with feeling so bloated most of the time.  We haven't been assigned a nurse but I will definitely take your advice and ask about it during Wednesday's appointment.

    I still have a great deal of anxiety over what we may find out in the coming days and weeks but I've also managed to clear my mind somewhat since the other day.  As you know the speed at which things happen is so concerning and you're hoping that the situation isn't getting worse while you're having to wait.  Having read about other people's experiences on here has helped because I see that my Dad's situation is not unique.

    This is my first real exposure to this terrible disease and the uncertainties that come along with it and I've been completely caught off-guard I suppose.  I really appreciate you taking the time to reply and I will indeed let you know when we get some further news.

    Thanks once again and take care.

    Andrew

  • Please can anyone advise me on this situation.

    Three weeks ago on Wednesday gone my father was due to have his biopsy.  As he was sat on the trolley waiting to go in he was told they would not be going ahead with the procedure because The Christie in Manchester were now involved.

    Since then we have had no information regarding his treatment.  We have been in touch with his GP and the gastro consultant's secretary who have both told us that his case is due to be discussed at the MDT.  This has been the case for three weeks now.  Is this normal, or at least to be expected given the current funding provided to the NHS?

    I'm torn between being patient and worrying whether his case has somehow managed to slip between the cracks given that more than one hospital are involved.  The lack of communication is hard to come to terms with.

    Many thanks to anyone who can help.

    Andrew