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Haven't seen oncologist due to poor health

phoenix000
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Hi everyone, I recently joined and not quite sure where to start... I found out my dad has stomach cancer few weeks ago. It was devastating to find out. The road to get to the diagnosis wasn't easy so we have been a bit scarred along the way (we were told it wasn't cancer, then 3 weeks later he passed out and got admitted where the doctor re-did tests to conclude it was - and his 2 months of suffering at home prior was due to that...)

Anyway, after the initial bad experience, we got admitted and been in the hospital since. He has had various other issues alongside his cancer, such as his weight was down, he was short of breath and he didn't have much strength (obviously, after being bed ridden for months!).

Our doctor said, him and other doctors including oncologists have reviewed his case and until he is better and has gained strength there won't be anything they can do about his cancer as he wouldn't be able to take it. Since then they have been treating his various issues, he has put on weight and gained some strength. However... 

However we are almost 4 weeks in (still in hospital) - he is still very short of breath and doctors can't tell us why which is making us frustrated. His oxgen levels, which were always good up until last week, are now below what they need to be so he needs to be on oxygen all of a sudden. And all the while doctors seem to be suprrised every week with stuff rather than expecting it.. He has had a minor blood clot which they aren't worried about, and he caught a lung infection in hospital which he is recovering from... 

I suppose my question is - Can I get him referred to somewhere else, should I (we are in gastro at the moment)? And how? How can I get a second opinion? Why won't a cancer doctor see him, would his symptoms not be related (maybe some if, not all?). If not cancer related, which department should he be in? Has anyone else had similar situation?

I will be going to PALS on Monday as well to discuss this as I am worried he hasn't been properly diagnosed about his other symptoms yet and they can't put their finger on why even after all the tests... And he can't be treated for cancer untl he is better.. seems like a vicious circle... We all feel so helpless.

And how can I go about arranging someone to talk to my dad about what is happening to him, mentally? He is going through so much and is emotional. We are however getting no support about this at all in the hospital although I did mention this to the doctor a couple of times.... 

I am sorry if I rambled on - we are still processing a lot 

Thank you xxxxx

 

 

 

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    Hi, 

    I'm sorry to read of the position you find yourself in. I think I am going down a similar route to your dad.

    A diagnosis of cancer of unknown primary took 13 appointments, various departments and scans by which time I became in so much pain and bed bound. Eventually Ended n Gastro I was assigned a Macmillan nurse I pleaded for help with the pain and weakness and she spoke to our local hospice who have amazing facilities to help people like us. The aim is to get me back on my feet, our of pain, physio, support and to take me to my first oncology appointment at our local Cancer hospital next week to discuss future treatments. Without there help the hospital will not start treating me until I'm strong enough.

    It all seems its happening round the wrong way but every case is different.

    My main reason for replying is to tell you that although the hospital can help build your dad up and do a wonderful job, the people who have the true expertise in these times are the drs and staff at our local hospices. 

    So here I am, staying in the hospice, day 3, drugs altered to suit me, sleeping and eating well and looking forward with fantastic support. The word hospice can be a scary one but if you are fortunate enough like me to have such facilities close by then please look into the prospect of your dad getting similar help to see him through to the first few days of treatment. It's good for him and for you as the family to be given an aim and be so well supported. My family have all relaxed a bit because they know how well I'm being treated, so that helps all round. Best wishes to you all. Xx

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    Hi,

    So sorry to read about your Dad’s situation.

    Reading your message, his case has been referred to a multi disciplinary team (MDT) which includes cancer specialists. This means that you already have a second opinion (probably far more). The oncologist doesn’t really need to see him (although as a cancer patient I know how reassuring a consultation can be) as a diagnosis is based on the results of tests and scans which are discussed in the mdt meeting by all the clinicians involved. This should have been explained to you but clinicians often wrongly assume this is common knowledge.

    Sadly this isn’t a rare situation, often the very people who need surgery, chemo or radiotherapy the most are too ill to be treated as all three can be pretty gruelling. 

    I hope they soon get to the bottom of this and your Dad is able to receive appropriate treatment. 

    The lack of mental health support for cancer patients within the NHS is a national disgrace. 

     

    Good luck

    Dave

  • Offline in reply to davek

    Dave I Have To Agree With You 100 precent onnthe mental health care,

    I just spoke to my chemo nurse on this last Thursday and we have one  councillor between 2 major hospitals that is assigned to this,it's an Absolute joke,my my mental health is on the floor since diagnosed,but il be at least 2 years trying to get an Appointment for this help,proberly il be dead by then,they really need to step this up,treatment,as in chemo, radiology ect is bad enough to go through,but your just left to your own devices after that,it's not good enough,imknow personally I'm finding the mental health and emotions and fear much worse than the cancer itself,

    Ange!

     

  • Offline in reply to Twolumps

    Thank you so much for your reply. I am sorry to hear about your news too but I am glad you are in a good place.

    may I ask, for hospice care, do you mean when he starts treamtent such as chemotherapy etc or while he is building up strength for it? I will look into local hospices and do some research. Thanks for your help.

    x

     

  • Offline in reply to davek

    Thank you very much for this, it is reassuring to hear, and yes he has been reviewed by a board of doctors when they first found the cancer. We will focus on trying to get stronger so he can get treated before it spreads.

    x

     

     

  • Offline in reply to Lilyange

    Ange, I am sorry you're going through this and mentally not getting any support. Have you tried contacting MacMillan Cancer Supprt? They are open 24/7 and I heard great things about them from my husband's mother who was battling cancer. Hope this helps. I hope you feel better soon.

    x

     

  • Offline in reply to phoenix000

    Hi, I haven't had any treatment yet. Got my first oncology appointmrnt next Wed to discuss treatment. The Hospice Dr felt they wouldn't do chemo etc while I was so weak and suggested I went to the hospice as an in patient to build me up and get me pain free and mobile enough to have whatever treatment I'm offered. If you were assigned a Macmillan nurse then I would ask them if this is a route you could take before treatment. Otherwise ask the hospital if you can speak to anyone re hospices. Or just call and take their advice. It's not scary it's there to help and you need the help to get him to the next step. Please let me know how things go. Don't stop pushing. All the best Rose xx

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