Is this the end? Or am I being negative? Input please.

Kassandra_818
Kassandra_818 Member Posts: 6
in Head and Neck Cancer #1

Hi, all. I just had a few questions. My father was diagnosed in May of last year with stage four H&N, which unfortunately has metastisized to his lungs. He had relatively little disease in his lungs, but we have not done a scan in four months. I am doing research because I am aware that he is categorized as "terminal," but we have been attempting to remain positive and believe that he may beat it. My father is relatively young, he just turned fifty-eight, and has four young daughters, the youngest being six and the oldest being nineteen, me. His symptoms have been getting quite worse but when I speak to a nurse it seems they try to brush it off as side effects of his chemotherapy. The last time we spoke to his oncologist was a month ago, and we don't see her for another week-and-a-half, unfortuntely. I am scared to talk to the oncologist about his symptoms because I'm never with her alone, my dad is always there and he wants to believe that he's doing great and that there is absolutely no chance that he might pass away. The research I have been conducting is terrifying, saying there is only a 7% 1-year survival rate of H&N that has metastisized to the lungs, and the spots popped up in March, seven months ago. I called the Cancer Care Institute that he recieves treatment at today to personally ask his oncologist to call me, but I thought I would check on here and see what any of you thought. He has lost five pounds in one week, and he is sleeping more than eighteen hours a day, constantly falling asleep while he is feeding himself (he is exclusively feeding-tube) and even mid-conversation. He can be very confused at times, and his pain is very high even though he is on a Fentanyl patch and takes liquid morphine. His speech has deteriorated quite a bit, he is very hard to understand due to slurring on top of his mumbling because he is so fatigued. While all of this has been occuring, his vitals have remained good, which is one of my rare comforts, along with the fact that he doesn't need assistance to go to the bathroom. But I am extremely worried, I have no idea to go about the idea of Hospice, if I decide to take that route if I do in fact need it. Do I need to start preparing myself? Or am I just being negative? 

Comments

  • Mulligan
    Mulligan Member Posts: 2
    #2
    Input FWIW

    I'm new-  Hopefully I'm not overstepping -  My intent isn't to sugarcoat cancer or twist magical thinking into science.  That being said, there are three kinds of lies: lies, damned lies, and statistics.  

    I have a friend that has had his cancer metastize to his lungs that is still functioning, living a normal life and doing well 5 years into his fight.  He is going to die, and probably from his cancer, but his is one of the 7%.  I suppose I will probably eventually die from cancer too, but I've been fighting since 2008 and am still here to complain about the experience to anyone willing to listen.  Everytime my doctors handed me an "Advanced Directive" form I told them to "F*** OFF" and threw the thing into the nearest trashcan, so I know a little of where your father is coming from.  Everyone's story and outcome is their own.  It is impossible to be prepared for every possible future.  You will probably know when and if it is time for hospice.  It will become increasingly obvious.  Hopefully there are professionals you trust than can help you through the process. Talk to them when your father isn't in the room.  If possible, talk about your fears with your father as well.  I did this with my own kids and it helped all of us come to terms with what we were going through.  I hope you have plenty of support, friends and family.  I especially hope your father's outcome is as he imagines, but the future is out of my hands.  It is probably of little comfort, but know you aren't alone in not knowing.  

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited October 2017 #3
    Get your ducks in a row

    K,

    You are in a quandary, filled with too much information and not enough information and really not good information.

    Is your father undergoing treatment right now?  If so, what?  I read stage IV and chemo and oncologist, but I am not sure where he is at in this situation?

    If he is receiving chemo right now it very much could be making him sick.  If he is receiving rads, that is strike two.  I did not speak very well or very loud during treatments and even for a spell post treatments.  I had to go to a speech therapist.  And tired, yes it kicks your butt and continues for a while post treatments.

    It doesn’t sound like his doctors are cashing in their chips and neither should you.  Many H&N members have had (treatable) cancer move to their lungs and many of those are 100% still here.  I think the 7% is the chance you may stub your toe tonight and not a reminder left on deaths door.  There could be good, right around the corner, include your Dad in what is going on and take steps to help him improve his mental and physical health.  There are people good at helping with these issues.

    You are not necessarily being negative, but this situation has oodles of room for improvement.

    Good luck,

    Matt

  • caregiver wife
    caregiver wife Member Posts: 234
    #4
    HIPPA

    Kassandra,

    So sorry you and your family are going through this.  Doctors/Caregivers cannot share any information with you unless they are allowed by patient.

    A little bit of information can be very dangerous.  Statistics apply to NO single person.  My husband was diagnosed stage IV with mets to lung.  He, too, was put on "terminal" treatment, to be continued as long as showing effective results - no advancement of desease.  He has had NO SIGN of cancer for 5 months now.  The 7% figure is used as tool in determining treatment options.  But, so are many other considerations.  The statistics are gathered from where???  A single study?  10 years worth of accumulated data?  How much has treatment changed in the past 10 years? (A LOT!)  And still, should his cancer return, there are multiple treatment options STILL available.  My husband has been dependant on a feeding tube for six years now, which is extremely rare, but quite doable.

    Your father's symtoms could be just from the pain medications he is currently taking, as well as the treatment does make a person very tired.  Unfortunately, what you describe is not unusual for a patient with this stage of desease.

    You are not being negative, you are being a concerned daughter.  At some point, patients must take the leap of faith in their doctor's ability.  After college, being  a medical oncologist requires nine years of medical education and training.  There is no way for we lay persons to come to that level of understanding what is going on.  Congrats to you for being an informed daughter!!

    Crystal

  • Klingels
    Klingels Member Posts: 78
    #5
    morphine and fentanyl

    The pain meds could be causing the sleeping, the confusion, and the speech problems. My husband was sleeping a lot, confused, and hallucinating on morphine.

  • ManOfSteelMan
    ManOfSteelMan Member Posts: 13
    #6
    Once in a while you hear

    Once in a while you hear anecdotes about how some doctor gave a person three weeks to live and thirty years later they are still alive thanks to blending beets and blueberries. I dismiss those claims out right. You don't know what the doctor said or if that is all that was said.

    From my experience, watching my father die of cancer, the doctor was pretty much on the money, give or take a week. Now, doctors (I think anyway) have to give you the bad news along with the hope. Sometimes we only hear the bad part and miss what can be done. Cancer is a scary word. I've been living with it for a while and every Halloween it says, "Boo!" My thoughts have always been to hope for the best and expect the worst. The worst usually never comes, nor does the best but somewhere in the middle of it all is the path this whole thing will take. I already know mine is incurable and will kill me eventually, I just don't know when because I haven't asked. When I'm finally in Hospice I'll begin making plans for the worst. For now, I've got things I want to do in life still.

  • Sinus2016
    Sinus2016 Member Posts: 36
    #7
    Communicate

    if you really want the truth you need to come out and ask your dad the tough questions, ask him to authorize you to be included with patient confidentiality so you can speak with his doctors. If he doesn’t do that then ask the oncologists questions while he’s in the room.   Your dad may be seeing you as his little girl and not as an adult. Want to be an adult take charge and don’t take no for answer. Be prepared and be strong, You both may need it and you both probably need each other.

    For me there was a tendency to want to hide the facts from my children (my daughter at 26 and my son at 23) but I realized I wasn’t going to able to keep it a secret, and even though I think of them as kids I realized they are adults and they learn reality of life which will be followed by death someday anyway.. (hopefully later than sooner) My kids showed  strength, supported my wife and I and it made me determined to survive. ( yet I knew inside they were scared).  

    i wish you and you father the best, I will pray for you both to be able to help each other.

  • lorijeannj
    lorijeannj Member Posts: 56 Member
    edited October 2017 #8
    Medical Power of Attorney

    You should have a talk with your father about becoming his medical power of attorney, unless there is another adult to do so.  If he is that weak, he may need someone to mske his medical decisions.

    Parents want to protect their children, but having an outright talk with the real goings on will only help you and your father.  When in the oncologist office, ask questions.  You are afterall in that office/

    You did state 'relatively little disease in his lungs'.  This is good.  He is on pain meds, this is what is making him sleepy.  You say 'terminal'.  Who declared him that.

    The internet is full of informaton, BUT, do not take all with a salt of grain.  Statistics are downright old today.  Do pay attention to dates on web pages when reading statistics.  They can be over 15 years old.  Drugs have certainly improved for survival of cancer.

    I wish you all well.  and look forward to more chats.

    We are all here for you.

     

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