ENT visit - no better news
He told him he did not think the major surgery would help and that basically the cancer on his tongue is going to kill him and there is nothing they can do.
We have an appointment on the 3rd with the chemo doctor to discuss chemo options.
I can not believe that there is nothing they can do. He also does not feel it is a reoccurance but that the cancer was never gone.
I can not understand why they think the chem will not help him at least slow the growth done some. I am pretty sure there have been people with that have gotten chemo again for a reoccurance or not getting it all the first time.
Can you please share your opinions or things I should ask the doctor on the 3rd. Dad does not want major surgery, but he is not ready to give up.
The ENT confirmed that it is only on the tongue and node. Does that make the situation any better.
Kathy
Comments
-
options
I am not a doctor, so take this with a grain (or a ton) of salt, but...I believe much of how they determine how to treat your dad has to do with the extent of the cancer AND his physical and emotional condition, especially his physical condition.
If my doctors had come to me and said, "You have six months to live if we give you this chemotherapy and also six months to live if we do not, and you will like your life a lot better if we do not" I'm pretty sure I would have opted out of the chemo. I am not saying that this is what your doctors are saying. I don't know your dad's age, I don't know his physical condition, I don't know his mental fortitude at this point, and I certainly do not know the extent of his cancer.
When I had head/neck cancer they performed a lengthy surgery on my tongue and my neck, then did 33 rad sessions along with a number of chemotherapy treatments (cisplatin) and as much as it might have hurt from time to time, I am happier for having lived through it today. On the other hand, I went through a number of tests to verifty that I could even LIVE through the surgery, to say nothing of the rads and the chemo.
To say that dad does not want major surgery but does want to give up is something of a contradiction frankly. You either go for it, or you do not, in my humble opinion.
If dad is turning down available surgery, he is the one limiting his options and there is nothing his doctors can do about that.
I wish him, I wish his family, the very best.
Take care,
Joe0 -
Kathy
I sent you a PM.0 -
Like Joe
I have to agree with Joe...I can understand your father's thoughts, but to have the best chances you have to commit.
I definitely don't have the answers, but I can offer my thoughts and prayers for a successful plan to develope.
Have you sought any second opinions from another institute?
Best,
John0 -
Optionssoccerfreaks said:options
I am not a doctor, so take this with a grain (or a ton) of salt, but...I believe much of how they determine how to treat your dad has to do with the extent of the cancer AND his physical and emotional condition, especially his physical condition.
If my doctors had come to me and said, "You have six months to live if we give you this chemotherapy and also six months to live if we do not, and you will like your life a lot better if we do not" I'm pretty sure I would have opted out of the chemo. I am not saying that this is what your doctors are saying. I don't know your dad's age, I don't know his physical condition, I don't know his mental fortitude at this point, and I certainly do not know the extent of his cancer.
When I had head/neck cancer they performed a lengthy surgery on my tongue and my neck, then did 33 rad sessions along with a number of chemotherapy treatments (cisplatin) and as much as it might have hurt from time to time, I am happier for having lived through it today. On the other hand, I went through a number of tests to verifty that I could even LIVE through the surgery, to say nothing of the rads and the chemo.
To say that dad does not want major surgery but does want to give up is something of a contradiction frankly. You either go for it, or you do not, in my humble opinion.
If dad is turning down available surgery, he is the one limiting his options and there is nothing his doctors can do about that.
I wish him, I wish his family, the very best.
Take care,
Joe
My father is 72 years old with high blood pressure and blood sugar issues. When a doctor tells you your that the surgery would be very hard on you and you might not make it through the surgery then that would make sense that a person that age would not see that as a very good option.
In my opinion when a patient decides that this is not the best route for them then the doctor should at least look at other possibilities to help that individual and not tell them to go home and let nature take is course because you are going to die.
I don't think just because my father is not willing to have a surgery that could kill him or never recover from, but saying he is not ready to give up in not a contradiction.
I agree with you that if something will make you worse then you might decide you don't want to do that but you are not giving up.
We do plan to seek a second opinion. I kinda feel like these doctors are not that familar with head and neck and once the first plan did not work they are not sure what to do.
Kathy0 -
KathySkiffin16 said:Like Joe
I have to agree with Joe...I can understand your father's thoughts, but to have the best chances you have to commit.
I definitely don't have the answers, but I can offer my thoughts and prayers for a successful plan to develope.
Have you sought any second opinions from another institute?
Best,
John
Kathy,
So sorry to hear about your father. I really don't have any suggestions, but will be sending positive thoughts to you and your family!
Greg0 -
My story
They removed 95% of my tongue because of cancer. They removed part of my thigh for my tongue. It was a 15 hour surgery and its the hardest thing i have ever done. I am still hurting and its been 15 months since the surgery. My doctor is Dr. Trever Hackman At UNC Chapil Hill in NC he is a great doctor who will tell you like it is. You might see if you could get your dad to him. Or to any teaching college. I know at UNC the doctor, chemo doctor and radioligist all sit down once a week and go over all there patients. The whole team meets and come up with the best plan of treatment. When i went there it was my last chance. I went to 3 specialist who would not touch me. They all said sorry there is nothing i can do. The last specialist suggest UNC. I am now cancer free but not pain free.0 -
Hi KathyDav1965 said:My story
They removed 95% of my tongue because of cancer. They removed part of my thigh for my tongue. It was a 15 hour surgery and its the hardest thing i have ever done. I am still hurting and its been 15 months since the surgery. My doctor is Dr. Trever Hackman At UNC Chapil Hill in NC he is a great doctor who will tell you like it is. You might see if you could get your dad to him. Or to any teaching college. I know at UNC the doctor, chemo doctor and radioligist all sit down once a week and go over all there patients. The whole team meets and come up with the best plan of treatment. When i went there it was my last chance. I went to 3 specialist who would not touch me. They all said sorry there is nothing i can do. The last specialist suggest UNC. I am now cancer free but not pain free.
Sorry to hear the news, was hoping for a better report then that. I agree get a 3rd opinion then suggest you and your Dad and Mom all sit down and talk about it putting everything on the table.
Hondo0 -
KathyHondo said:Hi Kathy
Sorry to hear the news, was hoping for a better report then that. I agree get a 3rd opinion then suggest you and your Dad and Mom all sit down and talk about it putting everything on the table.
Hondo
I would definitely seek another opinion. The fact that the Onco and ENT have differing opinions on the cause of the pain- that's boldface reason enough to get another opinion. Also, realize the Drs your Dad had thru treatment were wrong- they misdiagnosed the severity of your Dad's C, though that may not have made a difference in where he, now, finds himself. I can't say that I remember knowing where your Dad has been treated at, but I would urge you to seek another opinion from a recognized leading C center.
Kathy, it just breaks my heart to think of what your family must be going thru, now, as you must know every one of us shares my grief. With your Dad being 72, it is wrong for any of us to try and step into his, or your, shoes in regards to options going forward. The H&N battle is tough on even us 50-somethings, and at his age a number of other factors may be in play. But for you, Kathy, to have to experience the reality of how devastating our C can be, of which many of us have been spared this extreme- I am sorry, Kathy.
Hopefully, another opinion may differ to the Positive, and all will not be nearly as bad as it now seems. These are the times to trust in the Lord- to know that the Lord is with you, Kathy.
Believe
kcass0 -
how long before docs removed feeding tube?soccerfreaks said:options
I am not a doctor, so take this with a grain (or a ton) of salt, but...I believe much of how they determine how to treat your dad has to do with the extent of the cancer AND his physical and emotional condition, especially his physical condition.
If my doctors had come to me and said, "You have six months to live if we give you this chemotherapy and also six months to live if we do not, and you will like your life a lot better if we do not" I'm pretty sure I would have opted out of the chemo. I am not saying that this is what your doctors are saying. I don't know your dad's age, I don't know his physical condition, I don't know his mental fortitude at this point, and I certainly do not know the extent of his cancer.
When I had head/neck cancer they performed a lengthy surgery on my tongue and my neck, then did 33 rad sessions along with a number of chemotherapy treatments (cisplatin) and as much as it might have hurt from time to time, I am happier for having lived through it today. On the other hand, I went through a number of tests to verifty that I could even LIVE through the surgery, to say nothing of the rads and the chemo.
To say that dad does not want major surgery but does want to give up is something of a contradiction frankly. You either go for it, or you do not, in my humble opinion.
If dad is turning down available surgery, he is the one limiting his options and there is nothing his doctors can do about that.
I wish him, I wish his family, the very best.
Take care,
Joe
Hi Joe,
My husband Andrew had chemo/rad in 2009 cisplatin and 35 imrts rad/ then a year later had a recurrence with radical neck disection and pec flap. He has had PEG tube in for 12 months now and does swallow therapy every week, but now Swallow docs are telling him he needs to use dynasplint to stretch his jaw before he can try eating more foods and may never be able to get enough nutrition thru the mouth to have tube removed.
How long did it take you to start eating agin after surgery and get tube removed?
Very hard to think about future with always having feeding tube!0 -
I stand correctedPumakitty said:Options
My father is 72 years old with high blood pressure and blood sugar issues. When a doctor tells you your that the surgery would be very hard on you and you might not make it through the surgery then that would make sense that a person that age would not see that as a very good option.
In my opinion when a patient decides that this is not the best route for them then the doctor should at least look at other possibilities to help that individual and not tell them to go home and let nature take is course because you are going to die.
I don't think just because my father is not willing to have a surgery that could kill him or never recover from, but saying he is not ready to give up in not a contradiction.
I agree with you that if something will make you worse then you might decide you don't want to do that but you are not giving up.
We do plan to seek a second opinion. I kinda feel like these doctors are not that familar with head and neck and once the first plan did not work they are not sure what to do.
Kathy
Knowing now a bit more about the circumstances and what you were trying to say, I stand corrected and agree that another opinion and even chemo and rads may be in order IF the doctors have not also determined that dad's physical condition makes him at high risk as well for these options as well.
Take care,
Joe0 -
peg tubehjc1961 said:how long before docs removed feeding tube?
Hi Joe,
My husband Andrew had chemo/rad in 2009 cisplatin and 35 imrts rad/ then a year later had a recurrence with radical neck disection and pec flap. He has had PEG tube in for 12 months now and does swallow therapy every week, but now Swallow docs are telling him he needs to use dynasplint to stretch his jaw before he can try eating more foods and may never be able to get enough nutrition thru the mouth to have tube removed.
How long did it take you to start eating agin after surgery and get tube removed?
Very hard to think about future with always having feeding tube!
hjc, I had a PEG tube for four years following surgery, chemo and rads. I started the work on eating orally slowly by drinking Boost, Ensure, and Carnation Instant Breakfast, things of that sort: protein drinks. However I can tell you that it was the Jevity via the tube that helped me to start to gain weight. I went from 215 to 145, by the way, before gaining back 20 pounds over the four years. When the tube fell out for a third time, I decided to leave it out since I was eating more and more regular things(soups, yogurt, ice cream, pretzels, fish, pasta, things like that) but have since lost all that I gained and more, now hovering around 135 as I slowly work my way back up, hoping to get to around 175.
My advice is NOT to have the PEG removed until hub is no longer relying on it at all for any of his nutrition while maintaining a healthy weight. And if I had it to do over again, I would follow my own advice but we DO tend to become impatient.
Incidentally, my swallow docs did very little for me in regards to physical improvement. Yes, they tested my ability to swallow and offered ideas for how to better swallow, while also working with me on speech, but I went to a physical therapist for work on stretching the jaw, exercising the tongue, massaging and working the neck. When I went to her, my trismus was pretty bad, at about 21, 22mm, I believe it was, and when I left some months later I was up to about 30mm (she said 'normal' was about 35mm). (I left because she was retiring and by then I knew the drill anyway although it's not much fun giving oneself a massage
). It may be difficult to find a physical therapist who specializes in this sort of work, too.
I do have a device called a therabyte that I continue to work with to keep stretching the mouth, but it is expensive and one of my docs suggested you could just as easily use popcicle sticks as levers (or tongue depressors) to work on mouth opening exercises.
I wish your husband and his family the very best. Progress does come with time and effort, it truly does. Let's hope your hub can prove the docs wrong!
Take care,
Joe0 -
Jaw stretchinghjc1961 said:how long before docs removed feeding tube?
Hi Joe,
My husband Andrew had chemo/rad in 2009 cisplatin and 35 imrts rad/ then a year later had a recurrence with radical neck disection and pec flap. He has had PEG tube in for 12 months now and does swallow therapy every week, but now Swallow docs are telling him he needs to use dynasplint to stretch his jaw before he can try eating more foods and may never be able to get enough nutrition thru the mouth to have tube removed.
How long did it take you to start eating agin after surgery and get tube removed?
Very hard to think about future with always having feeding tube!
I used both the Dynasplint and Therabyte and they are about the same in my book except the Dynasplint cost me $2,759.00 and the Therabyte cost $529.00 Neither is any better than the other in my case. I started at 14mm and got to 21mm, my dentist said that is about all I will get, too much damage from being radiation twice. He also said I was very lucky to ever use my jaw again.
Wish you well
Hondo0 -
Kathy, I totally understandjim and i said:Kathy,
Praying for the
Kathy,
Praying for the second opinion to be a positive one. Also praying for you and your family.
Debbie
Kathy, I totally understand what you're going through. I'm facing a similar situation with my mother who has paranasal cancer. I would suggest getting other opinions from some more doctors. Don't just take one or two doctor's opinions on a life or death matter such as this. It can truly be a depressing situation, especially when you have an elderly parent because age becomes a factor.
Get more opinions quickly.0 -
Sorry to hear this
PumaKitty:
So sorry to hear this about your dad. The only thing I can tell you is that my friend's brother when his was basically at this stage; they did do chemo and rads as a pallative measure and so he could eat. He had esophgeal cancer. It did help him a great deal and was worth the treatment for him. Here's hoping for the best. God Bless!
Jan (Basketcase)0 -
Praying you find someJan Trinks said:Sorry to hear this
PumaKitty:
So sorry to hear this about your dad. The only thing I can tell you is that my friend's brother when his was basically at this stage; they did do chemo and rads as a pallative measure and so he could eat. He had esophgeal cancer. It did help him a great deal and was worth the treatment for him. Here's hoping for the best. God Bless!
Jan (Basketcase)
Praying you find some answers and a good treatment plan.0
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