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I stopped going to my checkups because the hospital failed to care for my Dad

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  • I stopped going to my checkups because the hospital failed to care for my Dad

    I had testicle Cancer almost 5 years ago. It was stage 1 seminoma and was confined to the testicle. Treatement was removal of the testicle and 1 dose of Carboplatin to mop up any stray cells. It was a success.

    For a good 3 years I was following up with my appointments getting my bloods, CTís and X-rays done. After the 3 year mark there was no more X-rays or CTís. Instead, for the next 3 years I would have blood tests twice a year.

    I stopped attending them. Hereís why:
    • My markers were never present in my bloods to begin with. I had no raised markers during diagnosis.
    • The same hospital were responsible for my Dadís death.
    Last July we took my Dad to A&E after he had been suffering with terrible stomach pain for weeks. His doctor got an appointment set up at the hospital for scans, except the scan dates were 3 months away. My Dad was in constant pain.

    We took him to A&E and I informed them he has had Cancer in the past. My Dad showed the nurse a huge lump on his side. She felt around but wasnít concerned. The lump was visible. The size of a small football. He was sent home with medications and told to wait for the scan.

    2 days later we went back to A&E because again my Dad couldnít cope. Meds wasnít working. He was sat on his sofa 24/7 rocking back and forward all day. He wasnít eating. He wasnít sleeping. He was losing a lot of weight.

    Once again they sent him home. This continued until around the end of August. He went in by ambulance this time and they decided to keep him in to run tests.

    I was livid at this point because they had dismissed him for so long. He first complained about the pain in May to his doctor who initially brushed it off as a pulled muscle. We were now approaching September and still nothing was done about it.

    Long story short they ran tests and he had stage 4 bladder Cancer. No cure. He was going to die. And he did.

    Watching him wither away in so much pain was heartbreaking. He was once an 18 stone body builder and here we was weighting just 8 stone. Cancer sucks! He died in tremendous pain.

    I informed the hospital I would be no longer coming for my tests and I want to change hospitals. I was told I couldnít and there was no point because all the local hospitals submit the bloods to my current hospital as they are the ďleading Cancer centreĒ.

    Itís almost 5 years now and my surveillance is finished. I have 1 more test next year and thatís it. But Iíve already missed a good year of testing now.

    My oncologist is angry that I hadnít continued with the test. Which puzzled me. To be honest isnít that my decision? And what do they use my results for anyway? Do they use them to build up statistical models to predict Cancer relapses?

  • #2
    Where are you? Are you in a location where you really only have one provider? Around here that would be completely unacceptable as well as unheard of. If you walked into emergency with a bulge, a severe pain, and cancer history you would be thrown in a gown and walked right into the CT room 30 minutes later, and have a radiologists report probably an hour or two later.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    9/27/2018 all clears up to this date!

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    • #3
      I am sorry to hear about your dad and your poor experience of the hospital and the system. It is heartbreaking to hear how he was treated. It should not happen.

      But, and please donít take this in the wrong way, I would urge you though to consider restarting your follow ups. The checks are there to find any relapse of your cancer early when it is more easily treatable and prevent you from having to go through some of the pain inflicted by this dreadful disease all over again. It will be hard for you, but it sounds as though you have a decent oncologist who genuinely wants to provide you with quality care. It may be that some of his colleagues in the same hospital have failed you and your dad in the past but that wonít mean all the doctors, nurses etc there are bad. It is of course your choice but were you to relapse, surely it is better to find it early? I am sure that your dad would want that.

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      • #4
        Mastersplinter,
        What is your reasoning for stopping your surveillance early? You are not hurting the hospital one twit.You are only jeopardizing your own health. Would you really prefer to die from TC just because your hospital screwed up with your dad?
        I understand you are very upset about your dad, but you are only hurting yourself by ignoring important tests.

        Dave
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

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        • #5
          I quit going to my checkups in July after 4yrs of all clear cts/xrays. Here I am now stage 3 currently going through bepx3. I regret not going to July's checkup every day. Do yourself a favor and keep going to the checkups.
          I was stage 1 100% seminoma, surgery then surveillance.

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          • #6
            I don't mean to sound harsh but your health is your problem. It's childish to stop going for surveillance as some kind of protest against a medical group. Find a different group and get back on your path.

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            • #7
              I am sure your father is looking on you and he would like you to check yourself. That is the reason you are here to enlighten your thinking. Please do a good thing for yourself and go check yourself up.

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              • #8
                Sorry about your dad, but you need those check-ups! Find another hospital, find a private lab, draw your own blood and learn to test it at home -- but do not fool around! Start paying attention to the signatures in this forum and you'll quickly see the point.

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