Presentation of findings

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Fergus2007
Fergus2007 Member Posts: 109
edited March 2014 in Colorectal Cancer #1
I am EXTREAMLY upset at how my fathers oncologist presents his findings.
I am of the STRONG believe that a positive mind-set is very important in everything you do.
... yet this is the exact thing that is taken away from my father every time he goes to see his oncologist.

At the very beginning (over a year ago) my father was told there is NO hope.
Even if this is true - WHY as a doctor say: "Nothing can be done" - Wouldn't ANYBODY rather know that the doctor will do anything to at least try?! Shouldn't the words out of the doctors mouth be: "I'll try everything in my powers"?!

Does the pationed have to be tortured into giving up?

My father has lived with stage 4 Cancer for almost two years now.
He is doing well (despite the fact he spent 3 months at the hospital and ICU)
He would like to have the dignity to be taken by surprise when he goes - and not constantly worry during his remaining time.

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
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    Your father needs a new oncologist!
    And QUICK! You are correct, he deserves a doctor who isn't already looking through him as if he's not a living, breathing, FIGHTING human being! If anything, he's proven the a$$hole that he was WRONG!
    mary
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Grrrrrrrr!
    Oh Fergus2007!!! That makes me spitting mad to hear that!! First, is there any chance of changing oncologists and meeting with the new oncologist before your dad does and explain exactly your feelings? Tell the oncologist that you and your dad both are positive thinkers and that you want to work with doctors who are not so burnt out that everything about Stage IV cancer smells of death. Be realistic too and let them know you are not living in a dream world... you and your dad are both fully aware of the realities of this nasty beast, that some people beat it, others don't, that sometimes it is very quick to take people and other times people beat it into submission/remission and live for decades more, even though there is no explanation as to how/why this happens.

    This is one of my biggest pet peeves. I do not consider myself a stupid person. Once I was dx'd as Stage IV, I knew this was something to be taken seriously. All stages of cancer are to be taken seriously, but Stage IV is probably the scariest to be dx'd with. So any of us who are are not living in a dream world and thinking if we take an aspirin it will go away... we KNOW the realities. But that does not mean we have to ACCEPT the realities... if we want to make our own realities, then more power to us. And there is so much power in thought and faith and belief, that too many times things will happen that even the doctors and all their education and training can't explain.

    I don't mean that doctors should start making promises that they have no way of guaranteeing will come true. I'm just talking that doctors should get rid of the negative doom and gloom explanations and attitudes. When a patient comes in smiling, thinking positive and is willing to fight the good battle until they can no longer fight... then a doctor should NEVER EVER try and discourage them, or try to break that spirit, knowing full well when they talk doom and gloom that's exactly what they are doing... breaking the fighting spirit.

    When I had the consultation with my interventional radiologist about whether or not I was a candidate for the Lung Ablation (RFA) procedure... he went on and on about how he has to turn away 50% of the people who are referred to him because they either had multiple tumours or there was no possibility of a cure... then he goes on to say that I have multiple tumours (7, of which 2 may be scar tissue). It's all how you look at it... to me, 5-7 very tiny lesions/spots/tumours are not MULTIPLE (ok, yes they are more than 1 but still)... compared to someone who has 30 or 40. Anyways, I was pretty sure he was leading up to "You are not eligible... you have multiple tumours and you are Stage IV". I told him that I would like him to do it because there are no others at this point and if we can get rid of these ones, then I can technically be in remission for years. He then said, "You do know, at some point you are going to end up back on chemo?" I told him I'll cross that bridge when I get to it... if I have to go on chemo to keep these suckers at bay, then so be it... I'll go on chemo. I will use whatever ammunition I have at hand and will continue fighting because I have a lot to live for. I have no idea if my attitude helped change his mind, or if he had planned on doing my RFA all along but just happens to be one of those doctors who live in a doom and gloom world.

    When I got home, I went into a funk, which lasted at least 4 days before I convinced myself that HE is just another tool, one that I need to use in my battle to fight the monster. Since he is the only radiologist who does this procedure, it's not like I can change radiologists. So, grin and bear it... and maybe my job here is to show him that us Stage IV patients can be full of hope and calmness because we live knowing positive always wins over negative... and maybe HE will learn something from me. You never know. Maybe that is why I'm in the situation I'm in... to be teaching professionals a lesson without even realizing that's what I'm doing. Maybe your father is in the same situation.

    You tell your father from me, another Stage IV Cancer patient... the fight is NOT over until he says it is. Sometimes, it's true... doctors can't do anymore... they've done everything that they can think of. But that doesn't mean the power to cure can't come from within. And if it's not a cure that can be brought out from within, there is a huge power source one can tap into that would make the living so much easier and calmer, and not have to be stressing out about constantly worrying how much time he has left. I think ALL of us Stage IV patients can relate to that... the pressure/stress of wondering how much time is left?

    My GP is a much more sensible man. When I was fussing about the fear I feel whenever I think that I'm "incurable", he said, "How are you feeling right now... today?" I told him, well, today I'm feeling great. "What about yesterday and last week?" I felt great then too. He says, "What are you doing with your time these days?" I then told him about my computer hobbies (maintaining a couple of theatre webpages), my volunteering down at the theatre office 2-4 afternoons/week, parties with friends, going to the movies/dinners with friends, having get togethers with friends regularly, etc. He said that it sounds like I'm having a full life and enjoying it, right? I said yes, I love doing the things I'm doing, I just worry about, "What if this were to end... before next year?" That scares the heck out of me! He said that it's silly to waste time worrying about that when there is nothing to show I can't continue having the fun life I'm having.... and no matter how many doctors give the doom and gloom speech, just go home, throw on a party dress, some makeup and continue going out with your friends and having fun.

    He then told me about a patient of his who had colon cancer. Two years ago it spread to his lungs, quickly... and he ended up having so many tumours on his lungs (hundreds) that, even with a PET scan and umpteen CAT scans they can't count them all there is that many. But here he is, 2 years later, still with hundreds of tumours on his lungs and he is walking, talking and enjoying life with no feelings of discomfort. He does not have a hard time breathing, he's not wheezing, he's not having any problems... but he still has hundreds of tumours. And the doctors/specialists can't explain why. With that many tumours, he should have died 2 years ago... there is no explanation as to why or how he can be alive today. His specialists told him the same thing... it's just a matter of time and he will probably go quite quickly since the tumours showed up so quickly and so many. None of the doctors "could do anything more" for him. No surgery, no RFA, not even chemo would help. But the man is a positive, happy guy and here he is today, living a fine life.

    So, yes, the doctors may be fabulous at what their specialty is... and thank goodness we have these wonderful doctors. But it seems no doctor goes into training on how to talk to patients and build up their inner strength and positive attitude to get them through the rough times.

    Hugggggs to you and your dad!!

    Cheryl
  • traci43
    traci43 Member Posts: 773 Member
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    change Doctors, I am!
    My oncologist was caustious but somewhat optimistic when I was first diagnosed, but with my first recurrance 12 months later (dec 08) he's given up. I haven't and I'm going for a second opinion with a well-known colon cancer researcher today. Evenif I say within my HMO, I'm getting a new oncologist. In fact, tomorrow I have an appt with another oncologist within my HMO.

    Don't take this sitting down, change Doctors and tell him why!!!!!!

    Best wishes for your Dad. Traci
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    look for a new oncologist
    I'd immediately research and find another oncologist in your area to give your dad another opinion. It would be worth posting your dad's location on this board. There are many people who could possibly live in your area and have a recommendation for a good, but kinder, gentler, (and aggressive treatment-wise) oncologist for you to go see. Insurance has to allow at least a consultation with another oncologist. Everyone deserves a doctor who will take them seriously and give them hope! I don't know what I'd do if my oncolgist told me right off that there was no hope. I actually told me before he ever had a chance that I already know the statistics, but I need to hear something that will give me hope and a reason to keep kicking and fighting this beast! He complied and has been pretty good. Even so, I sought out a second opinion recently after my very positive current oncologist made a goof on something he gave me. I really did like him and was worried about him finding out I'd gone to another doctor. I even prayed about it before going to see him again. His response was actually great- he told me "any doctor that gets upset when their patient seeks a second opinion is a bad doctor". I was pleased but surprised by his answer.
    Take care and good luck!
    Lisa
  • kimby
    kimby Member Posts: 797
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    Uggghhh....
    I don't get docs! Your father is the leader on this team and the doctor is one of the players. How can anyone reach a goal unless everyone has the same goal. Sounds like the doctor has already given up and if your father has not, then time for a new doc! You need a team player that can follow dad's lead. It's hard enough to keep fighting and stay optomistic without being beaten down by those that should be filling you with hope. Good luck to your family.

    Kimby
  • kmygil
    kmygil Member Posts: 876 Member
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    Fire him!
    Fire that oncologist now! What a creepazoid! There are other, better doctors out there. Considering the fight your dad has put up, he doesn't need naysayers--he needs a cheering section!

    Hugs and prayers,
    Kirsten