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Esophageal Cancer (1 Viewer)

matttyl

matttyl

Footballguy
Does anyone here have any experience with this? We've recently had a diagnosis in the family, stage 4 (there is no stage 5). From the extremely limited homework I've done in the past few days, things are looking very bleak. We're still gathering information, and will also be obtaining a second opinion simply due to the severity of the situation.

As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.

I don't know if I'm reaching out to get a glimmer of hope, or to get a non-interested party's unbiased option on the matter. Thank you for any thoughts, advice, prayers, or experiences you may be able to provide.

 
"Stage IV" are the two most dreaded words in any language and I'm so sorry you had to hear them. I have nothing to offer but my sorrow and a shoulder. I've heard them too many times in my life and agree with Shady.....#### cancer.

 
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No, it's the worse news we could have gotten. In the last week we've gone from "sore throat", to "cancer cells are present", and as of yesterday "stage 4 esophageal cancer." I understand there are two versions/types of stage 4, and I know that there are actually two types of esophageal cancer. No combination of those would be good.

Aside from family members in their 80s and 90s (I know, I'm extremely lucky in that regard), I've never had a situation of a "terminal" family member - which is looking more and more likely the case. I've got no idea what to say or do, and I'm so scared that I may say thing stupid to them which could end up being their last memory of me, and one of my last memories of them. I mean, they are a big football fan, like me (hence me being here). I may say something dumb like "The Packers (their team) look to be good this year, hope Rodgers stays healthy" - to which they think to themselves, or even worse say out loud "but I won't be here to see it."

 
matttyl said:
No, it's the worse news we could have gotten. In the last week we've gone from "sore throat", to "cancer cells are present", and as of yesterday "stage 4 esophageal cancer." I understand there are two versions/types of stage 4, and I know that there are actually two types of esophageal cancer. No combination of those would be good.

Aside from family members in their 80s and 90s (I know, I'm extremely lucky in that regard), I've never had a situation of a "terminal" family member - which is looking more and more likely the case. I've got no idea what to say or do, and I'm so scared that I may say thing stupid to them which could end up being their last memory of me, and one of my last memories of them. I mean, they are a big football fan, like me (hence me being here). I may say something dumb like "The Packers (their team) look to be good this year, hope Rodgers stays healthy" - to which they think to themselves, or even worse say out loud "but I won't be here to see it."
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I just went through losing a family member to cancer and I understand what you're feeling. At first, I was very afraid to say anything because I didn't want to make the mistakes you mention. But it's not about that. It's about spending as much time as you can with them now. Don't worry about making mistakes, GB. Any time you spend together won't be a mistake in the long run.

 
TheIronSheik said:
matttyl said:
No, it's the worse news we could have gotten. In the last week we've gone from "sore throat", to "cancer cells are present", and as of yesterday "stage 4 esophageal cancer." I understand there are two versions/types of stage 4, and I know that there are actually two types of esophageal cancer. No combination of those would be good.

Aside from family members in their 80s and 90s (I know, I'm extremely lucky in that regard), I've never had a situation of a "terminal" family member - which is looking more and more likely the case. I've got no idea what to say or do, and I'm so scared that I may say thing stupid to them which could end up being their last memory of me, and one of my last memories of them. I mean, they are a big football fan, like me (hence me being here). I may say something dumb like "The Packers (their team) look to be good this year, hope Rodgers stays healthy" - to which they think to themselves, or even worse say out loud "but I won't be here to see it."
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I just went through losing a family member to cancer and I understand what you're feeling. At first, I was very afraid to say anything because I didn't want to make the mistakes you mention. But it's not about that. It's about spending as much time as you can with them now. Don't worry about making mistakes, GB. Any time you spend together won't be a mistake in the long run.
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Very sorry to hear this. And IronSheik is correct. Just be there.

 
Sorry to hear this news.

I will echo Sheiky's comments. I lost my wife to cancer years ago and after her initial diagnosis I walked on eggshells for fear of saying the wrong thing. Eventually you figure out that being with them, fighting with them, and supporting them trumps any "dumb" statement you might make.

#### cancer, man.

 
matttyl said:
As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.
Click to expand...
I do have some experience with this diagnosis, and I feel like a complete ###hole responding to your actual question, but feel compelled to do so.

A year is probably a good beginning point for you to be looking at as a goal. Anything over eighteen months should be considered a very long time.

I'm sorry you and your family are going through this.

 
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Henry Ford said:
matttyl said:
As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.
Click to expand...
I do have some experience with this diagnosis, and I feel like a complete ###hole responding to your actual question, but feel compelled to do so.

A year is probably a good beginning point for you to be looking at as a goal. Anything over eighteen months should be considered a very long time.

I'm sorry you and your family are going through this.
Click to expand...
How about 9 months, in a family planning sort of way? God that's such a hard thing to type or even think about in this situation. If I didn't already feel for Robert Mathis' suspension, now I really do.

 
matttyl said:
Henry Ford said:
matttyl said:
As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.
Click to expand...
I do have some experience with this diagnosis, and I feel like a complete ###hole responding to your actual question, but feel compelled to do so.

A year is probably a good beginning point for you to be looking at as a goal. Anything over eighteen months should be considered a very long time.

I'm sorry you and your family are going through this.
Click to expand...
How about 9 months, in a family planning sort of way? God that's such a hard thing to type or even think about in this situation. If I didn't already feel for Robert Mathis' suspension, now I really do.
Click to expand...
It heavily depends on how far along he was when diagnosed and what kind of measures he's willing to take to stay around as long as possible. About 50-60% of people diagnosed with metastatic esophageal cancer make it 6 months or more after diagnosis. Half of those make it to a year. Half of those make it to eighteen months. Percentages drop after that.

 
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My limited knowledge of the diagnosis is "stage 4", and the PET scan shows it moved into his bones. More information likely coming over the weekend.

 
Sorry to hear. In addition to cancer just be a ravaging disease, there are few certainties or definitives and that just adds to the frustration of counseling the patient and the family. There are lots of "it depends" Think positive, but be ready for the worst.

 
matttyl said:
My limited knowledge of the diagnosis is "stage 4", and the PET scan shows it moved into his bones. More information likely coming over the weekend.
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Even if it's as bad as it gets, there are people who are outliers. Maybe the survival rate is only 3 percent at 5 years, but there are 18,000 cases of esophageal cancer diagnosed every year. Half of those are metastatic at diagnosis. That means even if the 5-year survival rate is 3%, 270 people survive past five years. There is no reason your friend/family member can't be one of them.

 
In this situation, spending time with your loved one matters above all else. Live. Laugh. Love. As much as you can, for as long as you can.

 
Very sorry to hear Matttyl. Henry Ford is spot on. Even if the survival rate is low somebody has to make up those percentages, may as well be your boy. There is a good book called Anticancer you may want to pick up for the family. If I recall from the insurance threads around here you are very knowledgeable when it comes to insurance/hospitals so I assume you and your family will be doing the research to find the best doctors and hospitals for esophageal cancer treatment. If he is a fighter and has support and the right treatment and mindset he has a shot at being part of that 3%. Unfortunately there are no guarantees though so no matter what course the next 6-12 months go follow BigBottom's advice above. That is advice we should all be following, regardless of our health or circumstances.

 
matttyl said:
...I've never had a situation of a "terminal" family member - which is looking more and more likely the case. I've got no idea what to say or do, and I'm so scared that I may say thing stupid to them which could end up being their last memory of me, and one of my last memories of them. I mean, they are a big football fan, like me (hence me being here). I may say something dumb like "The Packers (their team) look to be good this year, hope Rodgers stays healthy" - to which they think to themselves, or even worse say out loud "but I won't be here to see it." ...
Click to expand...
I've had too many. My experience is that your loved one will have too many people tip toeing around their feeling already and would really appreciate it if you did your best to act like nothing was going on. Of course you'll probably fail at times as this is hard. And you'll probably say something wrong at some point that gives you doubts, but your loved one will already have enough reminders from others that things aren't normal so no reason to be one more.

 
sorry to hear mattyl. lost my dad last year. just from my experience, be prepared for some different stages the person will go through. my dad at first was clear he didn't want anyone to see him, was very short when talking on phone, etc. after it was understood that the people who cared about him would be seeing him, it took him to the next process of enjoying the time with people he had. don't be afraid of saying something wrong. just sitting there and letting the person know they are loved is all that is needed sometimes.

 
Henry Ford said:
matttyl said:
Henry Ford said:
matttyl said:
As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.
Click to expand...
I do have some experience with this diagnosis, and I feel like a complete ###hole responding to your actual question, but feel compelled to do so.

A year is probably a good beginning point for you to be looking at as a goal. Anything over eighteen months should be considered a very long time.

I'm sorry you and your family are going through this.
Click to expand...
How about 9 months, in a family planning sort of way? God that's such a hard thing to type or even think about in this situation. If I didn't already feel for Robert Mathis' suspension, now I really do.
Click to expand...
It heavily depends on how far along he was when diagnosed and what kind of measures he's willing to take to stay around as long as possible. About 50-60% of people diagnosed with metastatic esophageal cancer make it 6 months or more after diagnosis. Half of those make it to a year. Half of those make it to eighteen months. Percentages drop after that.
Click to expand...
I heard Herceptin is sometimes used to treat certain late stage cancers when the patient tests positive for the HER-2 protein. Would it be applicable to some esophageal cancers?

 
Port will be put in today, chemo starts next week. Timeline he was given was "6 months with treatment". He has not changed any of his "future plans" at all because of this, which is think is truly amazing under the circumstances. He's still going to visit his (other) family over Thanksgiving, and still plans on traveling to the west coast for Christmas with his Mrs.

One silver lining, sorta, that I discovered yesterday.... Should he lose his fight, as a career military man who saw quite a lot of action in Vietnam, he will likely be laid to rest in Arlington National Cemetery. That's about as bad ### as it gets, if you ask me. I can't even drive by that place with a dry eye.

 
Not sure what I would do if I was told 6 months.

I hope he makes it through the holidays to spend this time with family.

 
Rohn Jambo said:
Henry Ford said:
matttyl said:
Henry Ford said:
matttyl said:
As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.
Click to expand...
I do have some experience with this diagnosis, and I feel like a complete ###hole responding to your actual question, but feel compelled to do so.

A year is probably a good beginning point for you to be looking at as a goal. Anything over eighteen months should be considered a very long time.

I'm sorry you and your family are going through this.
Click to expand...
How about 9 months, in a family planning sort of way? God that's such a hard thing to type or even think about in this situation. If I didn't already feel for Robert Mathis' suspension, now I really do.
Click to expand...
It heavily depends on how far along he was when diagnosed and what kind of measures he's willing to take to stay around as long as possible. About 50-60% of people diagnosed with metastatic esophageal cancer make it 6 months or more after diagnosis. Half of those make it to a year. Half of those make it to eighteen months. Percentages drop after that.
Click to expand...
I heard Herceptin is sometimes used to treat certain late stage cancers when the patient tests positive for the HER-2 protein. Would it be applicable to some esophageal cancers?
Click to expand...
I think it's rare in all cancers, but I'm sure it's worth the genetic test.

 
matttyl said:
Port will be put in today, chemo starts next week. Timeline he was given was "6 months with treatment". He has not changed any of his "future plans" at all because of this, which is think is truly amazing under the circumstances. He's still going to visit his (other) family over Thanksgiving, and still plans on traveling to the west coast for Christmas with his Mrs.

One silver lining, sorta, that I discovered yesterday.... Should he lose his fight, as a career military man who saw quite a lot of action in Vietnam, he will likely be laid to rest in Arlington National Cemetery. That's about as bad ### as it gets, if you ask me. I can't even drive by that place with a dry eye.
Click to expand...
I'm sorry. I hope you all have much more time than that.

 
matttyl said:
Does anyone here have any experience with this? We've recently had a diagnosis in the family, stage 4 (there is no stage 5). From the extremely limited homework I've done in the past few days, things are looking very bleak. We're still gathering information, and will also be obtaining a second opinion simply due to the severity of the situation.

As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.

I don't know if I'm reaching out to get a glimmer of hope, or to get a non-interested party's unbiased option on the matter. Thank you for any thoughts, advice, prayers, or experiences you may be able to provide.
Click to expand...
My uncle died of this and he never smoked or chewed a day in his life. Very sad. Oh, and #### cancer.

 
My Dad died of this.

He had it removed, which as a process, means basically they remove a large section of the esophagus, which pulls the stomach and everything else up even higher in the chest cavity. He lived on for two years after the surgery, but the problem was, he could no longer eat much, at all. He went from about 350 pounds to about 120. Most days he would eat Skittles, and that's about it. He just wasted away. If your family member lives in a state with Medical Marijuana, I would highly highly recommend it. Their desire to eat is just going to vanish.

Best of luck.

 
cstu said:
matttyl said:
Does anyone here have any experience with this? We've recently had a diagnosis in the family, stage 4 (there is no stage 5). From the extremely limited homework I've done in the past few days, things are looking very bleak. We're still gathering information, and will also be obtaining a second opinion simply due to the severity of the situation.

As heartbreaking as this is, and as strong as I'm trying to be for my family, I also want to look at this situation rationally and objectively. The 5 year survival rate is abysmal at best, should we realistically be looking at a year? So many thoughts running through my head, plans that will need to be made - other plans that will likely need to be canceled; I simply can not fathom what they must be feeling.

I don't know if I'm reaching out to get a glimmer of hope, or to get a non-interested party's unbiased option on the matter. Thank you for any thoughts, advice, prayers, or experiences you may be able to provide.
Click to expand...
My uncle died of this and he never smoked or chewed a day in his life. Very sad. Oh, and #### cancer.
Click to expand...
That's the case here, other than the possibly cig he and his brother stole from a family member and smoked behind the house as a kid or something. Doesn't really even drink.

 
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.

 
matttyl said:
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.
Click to expand...
He'll reunite with a lot of good men in Arlington soon. And like you said, that's pretty bad ###.
 
matttyl said:
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.
Click to expand...
Damn. Sorry to hear. Prayers to you and your family.

 
matttyl said:
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.
Click to expand...
I'm very sorry. This is a hell of a thing to go through, and it's happened very quickly. I hope he says his goodbyes and has as little pain as possible.

 
Henry Ford said:
matttyl said:
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.
Click to expand...
I'm very sorry. This is a hell of a thing to go through, and it's happened very quickly. I hope he says his goodbyes and has as little pain as possible.
Click to expand...
Given the drugs (and now morphine) that he's been on the past few weeks, the most painful thing he's had to deal with lately was the WVU game we all got together to watch on Saturday.

 
kutta said:
matttyl said:
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.
Click to expand...
He'll reunite with a lot of good men in Arlington soon. And like you said, that's pretty bad ###.
Click to expand...
Sorry to hear this. And know that most of the people in the planet have been buried. Only graves that lasted 2000 years were the pyramids. I am confident his grave will endure after the pyramids are dust. No terrorist can blow that up and no living serviceman would let someone lay a hand on it. Ever.

 
matttyl said:
Henry Ford said:
matttyl said:
At this point, we have "a few days" (maybe). I'll be spending my day picking up family members from the airport and driving them to the hospital to say their last goodbye and farewell. I hope I'm not racing against time to get them there (they started an insulin drip for him yesterday).

It may almost be fitting if he were to pass today, Veterans Day, being that he was a career military man. We went to visit him on Friday after a bit of a scare during a procedure (he had to be intubated to save his life then), and each and every doctor and nurse all referred to him as "Major" (his military rank) rather than by his name. That alone brought a tear to my eye.
Click to expand...
I'm very sorry. This is a hell of a thing to go through, and it's happened very quickly. I hope he says his goodbyes and has as little pain as possible.
Click to expand...
Given the drugs (and now morphine) that he's been on the past few weeks, the most painful thing he's had to deal with lately was the WVU game we all got together to watch on Saturday.
Click to expand...
So sorry to hear that the game that Texas got up for once a year happened to be his last. It's ok if you hate them for the rest of your life, everyone else with sense does as well.

 
Found this old thread today as I went to the grave for the first time since the funeral.  This was my FIL.  It was my wife, myself, and our 10 month old - going to meet his grandfather in Arlington for the first time. 

We're lucky that he was buried very near a nice shade tree, as it was very hot today in DC.  Had it not been for the tree, we could have only stayed for 5 or 10 minutes with the little guy, but with it we stayed for over an hour.

I bumped this thread back up to give an example of never judging a book by it's cover.  While we sat there - we had numerous "hardcore" looking bikers come up to us, say a prayer with us for my FIL, or to give my wife a patch (either the kind they have on their vests, or a star cut out of a retired US flag) and give her a hug.  It was very touching.  A few of them were actually brought to tears when we said that it was the first time my son was there to meet his grandpa.

 
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