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Prognosis Question - Should the patient be there when we ask what the prognosis is?

Linda3D's picture
Linda3D
Posts: 10
Joined: Mar 2010

I'm new to the boards. My 80 year old father was recently diagnosed with esophageal cancer. He had CT scan on February 16th that identified a tumor in his esophagus and an endoscopy the following Monday, February 22nd. The following day he was told that the tumor was cancer and an appointment was scheduled on March 1st with an oncologist. During the oncology appointment, my father, mother and I were told the cancer was at least stage IV and appeared to have spread to dad's liver, lungs and some lymph nodes. The oncologist scheduled a full body scan for Tuesday, March 9th an hour before dad's first chemo treatment. We attended a chemo class last night that explains what chemotherapy is, what is does and all the potential side effects. An infusion port will be placed tomorrow morning.

Since his diagnosis we have gotten a LOT of information and mother and I have done a lot of research on the Internet. Dad, not so much. His attitude is basically whatever will be will be/it's in God's hands - which is fine, of course. He's also been telling people (on the rare occasion when he mentions it) that we're hoping the chemo will "get this thing turned around" and that he'll be glad when he's back to feeling good.

I've talked with my mother privately and told her I feel like we've been talking about everything but the pink elephant in the room. We've decided to ask the doctor about dad's prognosis at his next oncology appointment on Wednesday, March 10th, when the doctor will discuss the findings of the PET scan. The oncologist told dad during the first appointment that we're going to fight this. What we want to know is what we're fighting for; what is the goal of treatment.

1. Is it to "cure" the cancer?
2. Is it to extend dad's life? If so, are we talking 12 weeks to 18 weeks, 6 months to a year, one year to two years or two years to five years?
3. Is it to make him more comfortable during the time he has left? Things like shrink the tumor making it easier for him to swallow, etc.

We know that no doctor can tell you how long someone has but you can get an idea. If they say dad has a year to live he could live 6 months or 6 years - we know that. But we still want to know their best guesstimate. I mean, if you think you have a year left you can take care of some things (living wills, DNR, etc.) but if it's 6 years you don't have to get on it right away.

Here's my question. Mom thinks we should ask the doctor when dad is not there. I think we should ask the doctor when dad is there. I think dad has a right to know. I'm happy he's hopeful and want him to remain so but there is a false hope and a real hope. I keep imagining me, him, someone some time down the road hearing that "This is it. You have x weeks left" and the person being blown away because he or she had no clue and they sit there stunned saying, "Why didn't anyone tell me? I would have done things differently, etc."

What do you think? Should dad be in the room when we ask or not? Any suggestions and advice will be greatly appreciated.

Linda

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

No one is more invested in this than your dad. The decisions should be his...and to me, if it were me, I would want to be there when the information is provided. Because you have a disease does not mean others should start to lie to you or treat you differently. It is still your life, and you have a right to know--and to make the decisions for yourself.

Blessings,
Betty

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Linda,

My dad is 72 and has EC...I really feel your dad needs to be there-part of the process--it's a pride,respect & control thing. He is still competent, alert and oriented, right? I think it will be hard for all of you no matter what, but to be excluded from your own treatment plan, prognosis, etc takes away any control the patient might have. It is hard to beat ANY-thing if one has no control (or not seen included in their own care).

There may be personal situations that would change this---but I can't see excluding him from something so important that s concerns him so intimately.

Just imagine being in that position yourself? Just because he is older doesn't mean he can't comprehend the situation and contribute to the conversation.
I don't mean to sound harsh---just have been through this with my dad and worked alot with older people (I am a Physical therapist).
know you can count on us here to support and be there for you & your family...
God Bless
Kim

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Linda,

My dad is 78 and was diagnosed with Stage III cancer in December of 09. He was insistent on wanting to know his odds, the cure rates at the hospitals and what his chances were. He know that in general only 20% of people are still alive after 5 years once the have an Esophogeal Cancer diagnosis and the prognosis was grim. He is an engineer/nuclear scientist/army officer and is very stubborn and kept asking and probing the question. He asked the surgeon when we were at Sloan, what is your success rate. And then an amazing thing happened - the surgeon sat down next to my dad and softly said.

Harry you are an individual and there are so many things that will determine what will happen to you as we go down this road, things from your strength, how you will tolerate the treatment, how quickly your body recovers, how it reacts to the treatment, how hard you fight to stay strong, your faith, prayers to name just a few and sometimes just some old fashioned luck. But the one thing I can tell you is that you are NOT a statistic, you are a person and an individual and we will do everything to fight this cancer and we will not look at the statistics to try and decide to treat you, so you shouldn't look at the statistics as you fight this. Remember you are an individual who has a life worth living and the potential of many more wonderful years. He told him the most important things he could do was stay strong, exercise, stay active and keep his weight and spirits up and enjoy his quality of life and most importantly enjoy life - and then leave the other stuff to the doctors.

This speach had such an impact on my dad. Although he still looks at the statistics and knows that his prognosis is not great he went from having a dark lost attitude to thinking positive and even when he says boy it doesn't look good Cindy, I remind him he is an individual and somebody has to be in that 20% - why can't it be him - and I know there are many survivors out there. We even are talking about some projects in the future or things he wants to do because the other thing the surgeon told us is that although the cancer will become a big part of your life don't let it take over your life and rob you of the joy of living. And we have talked that even if he isn't one of the lucky ones he is going to keep the faith and pray until the time comes to accept another outcome.

I hope this helps and you share it with your dad. At first my dad was uncomfortable talking to me about this, he thought he had to be strong and brave for me and my mom. He still has a hard time talking to my mom about this but he calls me almost every day now to chat and we discuss things openly. I think your mom is wrong, your dad deserves dignity and respect and full involvement in his treatment and life choices he doesn't need to be protected. Once he knows if he doesn't want to ask alot more questions that is up to him. But he should be the one to decide.

This is a really hard thing to go through and even harder because you are the "kid" there are lots of us on the site going through this with a parent so please ask us questions --- sometimes you may like what we say, others not so much, but know it all comes from the heart and we are walking in your shoes with you.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

unclaw2002

I am so moved by your post. THANKS

It must be because I now have 2 family members with this disease---my dad and now my uncle... I will keep this short---but I think we have an additional slogan for our CSN EC discussion board....

"SOMEBODY HAS TO BE IN THE 20% (that survive EC 5 years)---WHY NOT ME/YOU/family member ???"

The glass is half full for many..prayers for all on this board....
kim

earthperson2010
Posts: 15
Joined: Jan 2010

Under no circumstances I would have my patent, relative or friend be present during prognosis conversations. I would not even have them present during diagnosis conversations unless specifically requested by them. But prognosis conversation - NEVER!

How cruel this is for a patient to hear that he has a short term or whatever term to live! I would not wish for my enemy to know this if I had one.

I will pray for you and your father.

Linda3D's picture
Linda3D
Posts: 10
Joined: Mar 2010

Still stuck though. :-)

Maybe the question shouldn't be asked at all. Maybe what mom and I want to know shouldn't be known, can't be known. Please understand, we're not looking for exact numbers here; we just want an idea of how good or bad it is so we can prepare. Even something as simple as, "A year, maybe two, maybe longer." Just something to give us an idea. This diagnosis has already blindsided us, as I'm sure it blindsides everyone.

I'll tell you what started this whole 'need to know' idea. It was something we read.

-----------------------------------------------------------------------------------------

http://www.mayoclinic.com/health/cancer-diagnosis/HQ00379/METHOD=print

•Treatments have side effects. Understand what side effects to expect and what
benefits the treatment offers. Then weigh your willingness to tolerate the side
effects to reap the benefits. The goals of therapy can vary, and only you can decide
what side effects you're willing to accept to achieve your goal. For example, if
you're a young person with a curable disease, you may be willing to tolerate very
severe, short-term side effects for a chance of eliminating your disease. But if
you're 85 and have an incurable disease, you may decide not to accept a bad side
effect if the goal is to live only an additional month or two.

Ask your doctor what the treatment will accomplish. For example, the doctor's statement that treatment will increase survival by 50 percent sounds great. But if 50 percent means increasing life from eight weeks to 12 weeks, and those remaining weeks are spent vomiting and battling nausea, weakness and fatigue, maybe you haven't gained much.

-----------------------------------------------------------------------------------------

We want to know if going through the 'hell' we've heard chemo is will be worth it if it's only going to accomplish adding a few weeks or months to his life AND make the time he has left worse than it would be without the chemo. Mother and I both know of people who relapsed with cancer and opted not to go through chemo again so they could better enjoy the time they had left.

We are completely ignorant and naive about this so please forgive me if we have this all wrong. So there's that and my mother who "knows" it's the worst case scenario without even asking and dad thinking he'll go to chemo for a few weeks, get rid of this thing and be back to his old energetic healthy self. We're all just so lost. Maybe we should just leave things the way they are, listen to whatever the doctor tells us and not push for more 'specific' information about a prognosis. Take that and try to mix it with hope and do the best we can. Right now maybe I should just back off anyway and be like my sisters who don't live here. Wait for the news from them and stop trying to help because right now my helping doesn't seem to be helping at all.

As far as asking the doctor, I guess what we should do is ask dad if he wants to ask the doctor. If he doesn't NO one asks. And if he does then we ask. How's that?

Lost Linda

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

Linda,

Unfortunatly I lost my husband to this horrible disease. I think your Father should be there. It is hard to hear, yes, but he needs to know what is going on with him. 25 years ago, my husbands father died of EC also, and my Mother in Law, never told him he had EC. He new something wasn't right. I realize that was along time ago and treatments are much better, but your Dad needs to know. For all your piece of mind, I think you all need to know. My husbands cancer came back, and the doctors said "oh...he'll be around for a while, but we don't know how long cause noone can answer that"~~~1 month and 6 days later, he was gone. Even the Dr.s were suprised! Best wishes and lots of prayers for you and your family.

{{HUGS}}
Chris

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi Linda,

I like Chris just recently lost my husband to this horrible disease. You and your family need to know all of the options. Your Dad needs to be part of this process as long as he is of sound mind. He is the patient and it is his body. I don't agree with numbers or stats or what ever else.

There are many people on this net work that are at stage IV and are still living and loveing
and thats what matters.

Just brace yourself for this rollercoaster ride. It isn't fun.
Take care.
God Bless.
Kath

earthperson2010
Posts: 15
Joined: Jan 2010

Linda,

I would not read this email if I were you. These "facts" will make you more worried, scared, and upset. What will be, will be.

This is my personal advice.

earthperson2010
Posts: 15
Joined: Jan 2010

Dear Linda,

Do not be lost! You have a good idea. I think you should not push for more "specific" information. It sounds like he has peace in his mind that "he'll go to chemo for a few weeks, get rid of this thing and be back to his old energetic healthy self".

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

Linda,

I don't believe I have ever had any conversations with earthperson, and I don't mean to be rude, but you DO NEED to know the facts. This cancer is ugly, and not knowing and being informed is crap! My husband died from this and I personally would not go back and change anything we did. We wanted to know what was going on. It was my husbands cancer and HIS decison. When we found out the cancer was back, he chose to do nothing. That was HIS decision, because it was HIS cancer. We found out what few options we had, and chose to keep him comfortable. If we did not know what was going on, how could he be comfortable? And trust me, I am glad i knew also cause it help to prepare me for what the future would hold. I am 40 years old, my husband was 57, diagnosed February 6, 2009. 6 weeks of radiation 5 days a week, 2 rounds of chemo, surgery, 10 days in ICU, slow recovery, clean CT end of September 2009, November 17, 2009 mets to liver and lungs, nodule in esopheagus, hospitalized December 16-19 2009 for pain and dehydration, home 2 days, back in hospital, died Decmeber 23, 2009. If we had not known I can't even begin to imagine how devistating it would have been.

Chris

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

I replied to Linda (lost) a bit ago and saw that someone disagreed with me and strongly felt that a loved one should not be in a prognosis discussion. Well I was thinking of why I feel the way I do---and I realized something VERY important! My dad was at DUKE and seems to have a very similar disposition to the original poster on this page (Linda's -Phaedraus- Dad I mean).

To take that hop & spirit away is cruel---but being in a meeting discussing the treatment options & Plan need not be cruel. I rarely think there is an isolated meeting between Dr & patient or family where just "prognosis" is discussed in a factual basis. I don't know how other Dr's or facilities do it, but with my dad they discussed him a a person, not a statistic, pointed out findings, and treatment OPTIONS. They took a stage at a time and did not dwell on the blunt grim statistics of this disease. They did not lie or purposefully hide things from us, we were part of the conversation and all questions were answered honestly. In fact my dad was very surprised that surgery wasn't a definte option (dependent on stage of EC) and even if done was no guarantee and would be a long recovery. His surprises came a little at a time, but hey were honest, stating that his great health before (although 71) would help him greatly.

What I am trying to say is--If you have a Dr that is going to simply tell you flat grim statistics rather than involve you in an actual give & take discussion on treatment OPTIONS and possible expectations---then you might need a new Dr---not keep the patient in the dark or a separate room while everyone else talks about him/her. I hope I am making sense.

There are tactful ways to share the truth when needed. In fact some questions WE purposefully did NOT ask because we knew we would do the same thing no matter what the "answer" was.

I still strongly believe that we did the right thing and I know my dad felt like a dignified man by being able to be an active part of his care. We would have "killed" him if we stripped him of that dignity before he even had a chance to fight this.

I, like Chris & others, are NOT being CRUEL to say these things, but have been through it with actual caring physicians who handled it professionally. I think sometimes things written (rather than spoken) get misinterpreted on these boards.... I don't think Chris meant the family & patient need to be locked in a room and told how many days left they have to live...(note: little sarcasm). BUT I think it was helpful for them both to know what was coming and what the choices were. This is not cruel UNLESS it is done in an uncaring, unprofessional or uneducated manner.

Linda---this all stressful enough--I hope our insights can help you.
sorry so long
Kim

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

Well said Kim!

Chris

earthperson2010
Posts: 15
Joined: Jan 2010

earthperson2010

earthperson2010
Posts: 15
Joined: Jan 2010

All I will tell you is that I am a family member of a cancer survivor.

Linda3D's picture
Linda3D
Posts: 10
Joined: Mar 2010

My question started quite a little discussion, didn't it. Thank you so much everyone for taking the time to write what you have and to explain your views so clearly. (Note to bailey1459. I haven't seen an email from you. Would it be sent to the email address associated with my profile or some message system on this website?)

I believe I need to clarify one thing. We're not suggesting keeping information from dad about his cancer or treatment or from being involved in his treatment. On the contrary, we would LOVE if he actually got more involved. (But that's a subject for another thread.) We want him to be an active participant in his treatment and don't want to keep anything about his treatment from him. But a nurse told us the doctors will not discuss his prognosis unless we ask. Mom wants to know but it appears that dad does not want to know. Well...it's not that he doesn't want to know he just keeps...the way he talks it's like he's got some serious illness (more serious than the flu, for instance) but the doctors are going to treat it and he'll be back to normal in a month or so. So for him there's nothing to ask. He has cancer, they are treating it, he'll get well. Maybe we're wrong, maybe he does get it but this is just his way of keeping a positive attitude but we don't think so. Today, for instance he had the infusion port put in. The surgeon was talking to him about potential infection, stuff like that, and used an example of a woman who had her port in for a year. Dad said that wouldn't be a problem because he doesn't think his port will be in very long. Part of the problem, I think, is that dad has a hearing problem and he misses a lot. Mom and I make a point of telling all the doctors and nurses that and we interrupt regularly to ask dad if he understands, if he heard that, etc. And yet when mom and I say things like 'inoperable' and 'stage IV' dad says he hasn't heard anyone say that. But I'm getting off subject. No one is talking about keeping dad out of his treatment because yes, it is HIS cancer. But asking for a prognosis is not part of the treatment. I think if mom asks that dad needs to be there because he sounds like he just doesn't get it and I think he needs to know. Mom, on the other hand, is concerned that he'll just give up and not try if he hears bad news. Her mother was diagnosed with emphysema, took it as a death sentence, went home, put on her bathrobe and waited to die for 20 years. She stopped living. She doesn't want dad to hear a bad prognosis and give up.

We don't have to ask. We don't have to know. We can just do like we're doing now, continue going for treatment and continue fighting for whatever we're fighting for as long as we have, as long as he has. That is an option. But We do need to get dad to take this more seriously because right now he's not eating or drinking like he should ("I drank a couple of glasses of water today. It's not 8 but I made an effort.") Maybe he'll use the hand sanitizer we bought. ("I don't see me using that.") It's like we see all of this as life and death and he's going to just keep doing what he's always done and get well. It's a mess. And, again, I'm all over the place.

You guys are great - all of you. I'm glad I found you. I'll try to stay more on topic in the future and not ramble as much. Thank you again for taking the time to reply.

Linda
Feeling guilty for rambling so fade to black

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

Linda
We all ramble on here at time cause there is so much going on in our heads and heart. So no worries! I think maybe your Dad is trying to save you and your mom's feelings. Steve did that. His daughters would call and he'd be like..I'm doing good, I'm eating, I'm drinking, and the whole time I am looking at him as if her were crazy! He didn't want to upset them. Then one day Steve's friends called his oldest daughter and told her everything. She was devistated. Were they wrong by doing that? I think not! He got to spend 2 wonderful months with her. She's from Jersey and has a family, but was here. And I am glad she was. See I am rambling now! I will kepp your family in my prayers!

{BIG HUGS}
Chris

earthperson2010
Posts: 15
Joined: Jan 2010

Linda,

Look, it is obvious that your father does not want to know. Your mother is right to be concerned that he would give up. Why do you want him to know?

"the way he talks it's like he's got some serious illness (more serious than the flu, for instance) but the doctors are going to treat it and he'll be back to normal in a month or so". "Dad said that wouldn't be a problem because he doesn't think his port will be in very long". This is to his great benefit that he thinks this way, why to break his peace of mind?

Why do you really need him to "get it"? How will this help him in his treatment?

You want him to take better care of himself, like eat and drink better. You definitely will not accomplish it by telling him his prognosis. You might tell him that he will do better with his treatments if he takes good care of himself. He will be better pre-disposed for his treatments if he has peace of mind.

My opinion is that you should continue going for treatments and continue fighting for whatever you are fighting for as long as you have, as long as he has and not to give him the information that would emotionally "kill" him like his prognosis for example.

This is my last comment on this subject.

All the best to you and your father and your mother.

Linda3D's picture
Linda3D
Posts: 10
Joined: Mar 2010

This has gotten twisted so far in every which direction. One more clarification. My question was simply this: Mom wants to ask the doctor the prognosis but she doesn't want dad there when she asks. By 'prognosis' I don't mean "How long does he have left?" but rather "What is the goal of treatment?" To cure, to extend life (if so, a little bit or a lot) or to make him comfortable with the time he has left. The reason for our wanting to know (and for my wanting him to know) is so HE can best decide his course of treatment. For instance, if he's having HORRIBLE side effects from chemo and the purpose of chemo is to improve his quality of life then he may prefer to forgo the chemo and have better quality of life with what time he has left. That sort of thing. My mother would like a general (VERY general) idea of how much time he has left so she can emotionally prepare. You know, are we talking weeks, months, years. If nothing more than to know if there is some urgency (or not) to get things in order - prepare a living will, etc. Other than that we have no desire to ask how long because we know no one can truly answer that question.

With all that has been said here I believe the best thing to do is to ask dad if he would like to know what the goal of treatment is. If he doesn't want to know then leave it at that. I guess mom can ask if she wants to for her peace of mind. It's up to them. I just need to stop trying to help and take care of them and let them do what they want to do. Either way I feel utterly helpless. Thank you again for everything.

Pghmomma
Posts: 161
Joined: Nov 2009

Linda,
I understand where you are coming from and what you were asking and you still are asking. I think that dad needs to know his plan of care. Weather its lets to chemo then scans and chemo and see how everything is. Or weather its he has a 40% chance of it coming back when the chemo kills it. I think he should know.
Only because then he is very familiar about fighting the cure and what is about to happen.

I know when my dad came out of surgery we all new he would need radition but didnt wanna tell my dad to upset him, we wanted him to focus on getting better. Well now that its done and he is better he is going thur chemo now, my mom asked the DR what was the liking hood of it coming back even with treating with chemo. He answered with my dad in the room. we didnt wanna hide it from him, we wanted him to understand that this MAY come back and if it does we will deal with it it sokay. God has a plan.

Take care and best of luck in what you and your family chooses to do.
Tina

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