Here again and very concerned!

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Hello everyone, I’ve not posted in here for a long time as my dad had, as far as we’d been aware, been in the clear and living his life with a bit of normality for a while but it seems that things have taken a turn and I’m trawling the internet researching once again. For background, Dad was diagnosed with stomach cancer end of 2023, the initial attempt at gastrectomy was unsuccessful as they found the tumour was touching (not invading) the pancreas and they would need other specialists involved. He had four rounds of FLOT after that which reduced the tumour down enough to go ahead with surgery. He had a partial gastrectomy (lower) plus a Whipple procedure at the beginning of August 2024. He recovered amazingly well and had the four rounds of FLOT post op. Following that all his scans have been clear, his last CT was in April this year all clear and he recently made a return back to his physical job as a street light electrician so things were really on the up. He’s lost quite a bit of weight the last month and a half but this coincided with his return to work so put it down to that. However, a couple of weeks ago he started having a few episodes of vomiting again, no where near the same frequency or severity as before his original diagnosis but obviously raised alarm bells. He also started feeling bloated to the point of being uncomfortable and had developed a hernia so he went to the GP. Anyway an ultrasound on Friday revealed that alongside the hernia the bloating was being caused by Ascites (this pressure has caused the hernia) and the ultrasound guy said the Ascites is most likely linked to his prior diagnosis (so the cancer). He also had a CT scan on Friday but he’s now not got an appointment with his oncologist until 14th November so no results or anything else until then. I know this is fairly quick in the cancer world but I’m really concerned about him just being left with the Ascites situation untreated or further investigated until then. He’s had no follow up from his GP who ordered the ultrasound in the first place. I feel that other things should be happening before the 14th but I don’t want to panic him by pushing him to ask for more? I know that Ascites is an indicator for advanced recurrence and my first thought is peritoneal spread. I just don’t think we should be sat around with nothing happening at this point. Maybe I’m just here to vent my frustrations, see if others have experience of Ascites and it being addressed? I can’t believe we’re even here after all the amazing progress, he made a phenomenal recovery post op and responded to chemo so well, it’s a kick in the teeth that this soon after him getting through all that we’re possibly starting over again and potentially in a much worse position. I know the surgery has given us more time already and we’re all grateful for that but it’s hard to accept this bad turn just 15 months post op. Any insights or advice would be helpful. Thank you x

  • Hello Livealot

    I am sorry to hear that your Dad has had some concerning symptoms and has been told he has ascites. I understand how worrying this must feel for you both after he was doing well after his original surgery and FLOT.

    I know that it is hard for you both to wait for the appointment on the 14th but I suppose it is to give time for the scan results to be looked at and to look at and to enable time for the Multi disciplinary team meeting to take place if needed. 

    I have not personally had experience of ascites however if you give the Support Line a call one of then nurses would be able to talk you through what it could mean and how it can be treated. This link has some information that may help.

    Ascites and cancer: causes, symptoms and treatment | Macmillan Cancer Support

    I wish you both well for the appointment on the 14th but in the meantime if Dad has any worsening or concerning symptoms do contact his GP or NHS 111 for advice. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane, thank you for your reply. After a little push my Dad spoke to his oncologist’s secretary and got an appointment for today. Sadly it was confirmed that he does have peritoneal mets and there are a few deposits. No sign of spread elsewhere and they are trying to get him started with FOLFIRI asap so we just have to hope that gives him some more time but the odds are slim from what the oncologist said. Devastating to have our fears confirmed. 

  • Hi Livealot

    I am sorry that it was not better news and I understand that it must feel devastating at the moment. 

    I hope that Dad responds to the FOLFIRI treatment and that it gives you some more time together. 

    Do give the Support Line a call if it would help. 

    If there is anything you need, then you know where we are.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm