What do you think?

Trubrit
Trubrit Member Posts: 5,796 Member

http://abcnews.go.com/Health/terminally-ill-cancer-patients-fully-understand-prognosis-study/story?id=39305350&cid=share_facebook_widget

I am having a debate about this article on my Facebook page. Well, not a debate, as only a few people have replied to my post. 

Anyway, I just can't belive that only 5% of Cancer patients understand their prognosis. I think there is confusion between understanding what is going to happen and denying what is going to happen. I know several people who refuse to believe they are going to die (heck, I'm one of them), but that has nothing to do with understanding that the stats are stacked against me.  I know people who don't want to know what is going to happen, but I still refuse to believe that they don't understand. 

When someone says they have been diagnosed with Cancer, what is peoples initial reaction? Isn't is along the lines of 'oh no, you're going to die'? 

What do you think? 

SUE

 

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Comments

  • vtspa6
    vtspa6 Member Posts: 172
    My husband's Onc. always

    My husband's Onc. always mentions that if this chemo does not work there is no other options for him.  Right now it seems to me that it is working,  5 smalls spots still there however no new growth.  I guess what confuses me is I read so many become NED for many years thru treatment being dx'ed w/stage 4. Is it because there are better treatments than before?  Or is it still the norm 'your lucky to survive past 5 yrs'. With that I sure hope Tim will be one of them. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I really didn't understand

    I really didn't understand mine for a long time. I've mentioned that I asked the docotr who first told me how bad it was because that's what they do in the movies and he just replied 'it's cancer, it's bad'. What I meant was how long do I have but I realize he didn't know. It didn't get staged until the surgery. With cancer being different for everyone I'd think they can't really say. I've heard so many stories of people passing quickly after being diagnosed, including from colorecatl cancer, that I think there's no way to say and so they don't even try. When my husband had a colonoscopy several months ago and told my surgeon- who was doing it- that I had spots on my lung but they didn't know yet if they were cancer, he made a comment about me probably having about 13 years then and that they're making great strides and might have a cure before that time. How he pulled 13 years out of his behind I have no idea.

    Anyway, I don't know as much as I should and there are things I've avoided knowing becase I'd worry myself to death. But I also would look askance at any doctor who tried to tell me exactly how it would go. At this point I'm not even sure that the cancer is what's going to kill me, it might be more likely it'll be something to do with the blood clot.

    My initial reaction if someone tells me they have cancer is 'uh oh, how long do they have' and I always assume it's not long.

    I'm not sure that anything I've said answers your questions, Sue. Sorry.

    Jan

  • danker
    danker Member Posts: 1,276 Member
    Cancer

    Having cancer at age 77, I suppose most  thought it was a death sentence.  But next week I will be 84  and have been NED for 6 yrs.  Go figure???

  • LindaK.
    LindaK. Member Posts: 506 Member
    Looking back

    Hi Sue, being on the other side of a cancer diagnosis for my husband and 2 years of treatment, I have to say neither one of us really understood his diagnosis.  After he passed away, I requested a copy of all his medical records.  My daugher is an RN and teaches nursing.  She and I looked everything over and both felt his cancer was far worse than they ever told us.  I actually thought that was a good thing since we still had hope up until he was told he had weeks to months left.  He was initially diagnosed as stage II and the stats for him were very good for a long life.  While Folfox treatments were offered at his choice, he did 12 rounds and within 3 months of finishing chemo another tumor had grown in his small intestines.  I feel there were many missteps in his treatment by the inept group he went to with his first diagnosis, I don't know if anything would have been different in the end.

    Linda

  • MS2014
    MS2014 Member Posts: 58
    edited May 2016 #6
    Hard to admit it

    Hi Sue

    I think it is very hard to admit and face that options are over. I'm not a cancer patient but my mother was told twice there were not more options (2014 and early 2016). Finally things changed adn we are still figthing. When we thougth there were not more options our reaction was to try to find a way to keep fighing: Maybe it is the human nature of some of us to denny we are going to die till the last moment

    Do you thing options are against you? I don't think so. You are a real example after time beeing NED and I am so happy for you about that

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    MS2014 said:

    Hard to admit it

    Hi Sue

    I think it is very hard to admit and face that options are over. I'm not a cancer patient but my mother was told twice there were not more options (2014 and early 2016). Finally things changed adn we are still figthing. When we thougth there were not more options our reaction was to try to find a way to keep fighing: Maybe it is the human nature of some of us to denny we are going to die till the last moment

    Do you thing options are against you? I don't think so. You are a real example after time beeing NED and I am so happy for you about that

    Hello MS2014

    I think the odds are against me for sure, but I also think that there is no reason why I can't be part of the 11% that survive. Best for me to look at the little picrture (the 11% survival rate) as opposed to the big picture - 89% death rate. 

    And yes, it is human nature to fight. I do not see the desire to fight as any kind of denial. I figure I am going to live; i f I am wrong, well, so be it, I've been wrong before. 

     Fighting it is part of living, it has nothing to do with denial or lack of understanding. 

    I will reply to Linda above, but yes, there are those Doctor's who don't share all the facts and figures. I think it is the patients choice to know or not know, not the Doctor's choice to tell or not tell.  And if that is what the article means, that 95% of patients do not understand their diagnosis because their Doctor's do not tell them, then that is shamefui. 

    And I thank you for your kind words. 

    SUE

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited May 2016 #8
    LindaK. said:

    Looking back

    Hi Sue, being on the other side of a cancer diagnosis for my husband and 2 years of treatment, I have to say neither one of us really understood his diagnosis.  After he passed away, I requested a copy of all his medical records.  My daugher is an RN and teaches nursing.  She and I looked everything over and both felt his cancer was far worse than they ever told us.  I actually thought that was a good thing since we still had hope up until he was told he had weeks to months left.  He was initially diagnosed as stage II and the stats for him were very good for a long life.  While Folfox treatments were offered at his choice, he did 12 rounds and within 3 months of finishing chemo another tumor had grown in his small intestines.  I feel there were many missteps in his treatment by the inept group he went to with his first diagnosis, I don't know if anything would have been different in the end.

    Linda

    Hello Linda

    So good to see you popping back on the board. 

    I'm begining to think I have misread the article or missed something. I will go read it again. I confess, I read it right before going to my friends funeral, so possible that I've got my knickers in a twist over the wrong interpritation. 

    Anyway, I am happy to see you here. 

    I am sorry that you have found out that your husbands Cancer was more advanced that they led you to believe.  That is certainly the Oncologists fault, and not you or your husband's fault. I do not understand why a Doctor would mislead a patient about their health, especially if it is life threataning.  I am glad that it gave you hope, but I think you would still have had hope, if you had known. The will to live, to fight, is so strong within us, that when push comes to shove, we are willing to fight the fight. 

    I hope that you are finding peace as you continue your journey through your own life. I can only begin to imagine what life would be without my own husband, and imagining is bad enough. 

    SUE

  • Alaska_Amp
    Alaska_Amp Member Posts: 5
    Don't Ask, Don't Tell...

    My experience with medical and surgical oncologists is that if you don't ask very specific questions directly, they will not answer them. 

    Add to the black hole of fear and uncertainty,  you initially simply aren't adequately informed about what questions you should be asking. Cancer is a very big subject. You're so busy trying to deal first with the shock of the diagnosis, followed by all the surgeries and chemotherapy and trying to heal from all the above that research into your diagnosis/stage/prognosis is delayed while you try to cope.

    Once you catch your breath and begin to investigate, it becomes clear just how much information you don't have in order to understand what your individual chances of survivability really are.  I don't know why physicians are not more precise and direct, but hope is always an empowering thing. They have expressed to me that if you ask the hard questions, then they feel that you're ready to hear the answers.  I fight hard, hope for the best, and prepare for the worst. Some days are better or worse than others.  I did make final arrangements and purchased guaranteed whole life insurance policies for my family and loved ones.

  • wolfen
    wolfen Member Posts: 1,324 Member
    Sue

    I think many times your heart refuses to believe what your head is telling you. Your heart is full of hope and as Craig would say "Without hope, we have nothing.". As I look back now, I believe I could see the truth written on the faces of both Debbie's and Ron's doctors even though the words were not spoken. Perhaps Debbie and Ron accepted it, but I was not strong enough to allow myself to.

    Luv,

    Wolfen

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Up front

    Well, I guess I just thought that all Oncologist were like mine. When he first came to visit me, two days after my resection, he had the results to my pathology and he laid it out in no uncretain terms. He told me the stats, he talked briefly at that time about possible treatments, but he was quite clear in diagnosis and prognosis. I was under no illusions. 

    The same when the Cancer spread to my liver. He laid it all out again. And, when I go back in, excited when he tells me my scans are clear and my CEA is good, he always lets me know, in a very nice way, that it is good, for now. 

    I like him allot for his openess, it is what I want. I understand it is not what everyone wants, and now I see it is not what everyone gets. 

    Wolfen, it is always wonderful to see you here as well. I know you caregivers still visit the forums, even though your loved ones have passed, and I am always so touched, and so impressed with your strenght of character, and your desire to continue to share the wealth of knowledge that you have, with others. 

    Bless you all! 

    SUE

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited May 2016 #12
    Sue, your stats about an 11%

    Sue, your stats about an 11% survival rate and 89% failure rate. Where does that come from? And is that specific to colorectal cancer or cancer in general? That seems really high. And what is the time frame? Are they including cancers that eventually kill people years and years after diagnosis?

    Jan

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    JanJan63 said:

    Sue, your stats about an 11%

    Sue, your stats about an 11% survival rate and 89% failure rate. Where does that come from? And is that specific to colorectal cancer or cancer in general? That seems really high. And what is the time frame? Are they including cancers that eventually kill people years and years after diagnosis?

    Jan

    Stats for me and my situation

    These are the stats the Oncologist gave me for my specific situation after my reuccurance in the liver. They were different when I was first diagnosed, but not by much. I think I still have the paper the Oncologist gave me when we first met (Met. HA!)

    I believe the Stats change depending on stage, the level of that staging, spread, lymp node involvment, mets and how many.  Amd this is on the five year range. I'm heading into my fourth year. And no, I don't worry about the stats or the years. 

    SUE

  • NewHere
    NewHere Member Posts: 1,427 Member
    I Do Not Know

    I do not think I am in denial.  I am at 50/50, giove or take a point or two, of being here in 5 years (now closer to 3-1/2).  The Ocologist is very happy with what he is seeing on my scans.  He told me initially, based on my age and overall health, even if the spots in the lungs turn to be cancer, he feels it would just be "wiped out."  He also said recurrences and issues, in his opinion, occur within two years.

    I do not think I am uninformed or in denial.  Other than some neuropathy, I am in good shape.  I know it can come back at any time and I probably should take care of some putting things in order a bit more.  But it is only in the last few months, since December, where I was feeling more towards normal. Able to play guitar a bit more like normal and it is baseball season.  

    I do know that 11 out of 20 lymph nodes is not ideal.  I do know the odds.  And every scan and blood test, well we all know the drill.  

    Researchers from Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornell Medicine followed 178 cancer patients who were determined to be terminally ill. They interviewed the patients to see if they understood the gravity of their disease and their prognosis.

    Patients were asked what stage cancer they had, their current health status, how long they expected to live and if they had recently had a life-expectancy discussion with their doctor. Just 5 percent of the patients accurately answered all four questions about their disease and prognosis correctly. Additionally, 23 percent of patients had had a recent and a previous discussion about their life expectancy with their doctor, according to the study.

    I may see if I can find the article.  The first part indicates terminally ill patients, the second part is broader questions.  Or are we supposed to ask the questions when told we are somehow "terminal."  I know my staging, my health status, what the stats say and asking my doctors about the stats.  They said stats are stats and really do not seem to have given me an expiration date.

    But I do get the feeling from time-to-time "oh $^&$^#@*&  cancer?  Really?  HUH????" where there is a chill and the rest that last for a moment.  Really strange how it pops up.  Today is was just walking across the parking lot to a place to pick up a cup of coffee.  Out of nowhere.  BAM!!.   

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited May 2016 #15
    NewHere said:

    I Do Not Know

    I do not think I am in denial.  I am at 50/50, giove or take a point or two, of being here in 5 years (now closer to 3-1/2).  The Ocologist is very happy with what he is seeing on my scans.  He told me initially, based on my age and overall health, even if the spots in the lungs turn to be cancer, he feels it would just be "wiped out."  He also said recurrences and issues, in his opinion, occur within two years.

    I do not think I am uninformed or in denial.  Other than some neuropathy, I am in good shape.  I know it can come back at any time and I probably should take care of some putting things in order a bit more.  But it is only in the last few months, since December, where I was feeling more towards normal. Able to play guitar a bit more like normal and it is baseball season.  

    I do know that 11 out of 20 lymph nodes is not ideal.  I do know the odds.  And every scan and blood test, well we all know the drill.  

    Researchers from Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornell Medicine followed 178 cancer patients who were determined to be terminally ill. They interviewed the patients to see if they understood the gravity of their disease and their prognosis.

    Patients were asked what stage cancer they had, their current health status, how long they expected to live and if they had recently had a life-expectancy discussion with their doctor. Just 5 percent of the patients accurately answered all four questions about their disease and prognosis correctly. Additionally, 23 percent of patients had had a recent and a previous discussion about their life expectancy with their doctor, according to the study.

    I may see if I can find the article.  The first part indicates terminally ill patients, the second part is broader questions.  Or are we supposed to ask the questions when told we are somehow "terminal."  I know my staging, my health status, what the stats say and asking my doctors about the stats.  They said stats are stats and really do not seem to have given me an expiration date.

    But I do get the feeling from time-to-time "oh $^&$^#@*&  cancer?  Really?  HUH????" where there is a chill and the rest that last for a moment.  Really strange how it pops up.  Today is was just walking across the parking lot to a place to pick up a cup of coffee.  Out of nowhere.  BAM!!.   

    Article

    On my FB page, Lizzard said that she had looked up the actual article in 'the Oncology Journal' and that it 'gives a little different slant'.  

    From my understanding of the link I posted, it says that the Cancer patient is the one that lacks understanding, but I think the actual article might refer to the fact that the patient doesn't get the full infomation leading to the lack of knowledge. 

    I will have to ask Lizzard to direct me to the article. 

    SUE

  • Phil64
    Phil64 Member Posts: 838 Member
    edited May 2016 #16
    Omg

    This is a hard read. I wonder if they think that every stage IV diagnosis is terminal? I know when I was looking for a medical team the key criteria was to find a team that would fight with me for a cure. That being said they did point out the seriosness of the diagnosis but also were clear that there is hope for a cure. And they assured me that they had patients that were NED for over five years. They also said that we would call it cured if we can get to 5+ years NED. 

    Anyway. I hope that they are truthful.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Phil64 said:

    Omg

    This is a hard read. I wonder if they think that every stage IV diagnosis is terminal? I know when I was looking for a medical team the key criteria was to find a team that would fight with me for a cure. That being said they did point out the seriosness of the diagnosis but also were clear that there is hope for a cure. And they assured me that they had patients that were NED for over five years. They also said that we would call it cured if we can get to 5+ years NED. 

    Anyway. I hope that they are truthful.

    Differ

    I have found that each Oncologist differs in their belief and treatment of Cancer. I can only speak about the way my Oncologist has dealth with my personal situatoin. When I got real excited about getting two years NED, he made it clear that even though it was good, it did not mean that I was Cancer free or that it would last. He wasn't negative, I like to think that he was being cautiously optomistic, which is about how I feel about it, with a heavy leaning on the optomistic. 

  • LindaK.
    LindaK. Member Posts: 506 Member

    Don't Ask, Don't Tell...

    My experience with medical and surgical oncologists is that if you don't ask very specific questions directly, they will not answer them. 

    Add to the black hole of fear and uncertainty,  you initially simply aren't adequately informed about what questions you should be asking. Cancer is a very big subject. You're so busy trying to deal first with the shock of the diagnosis, followed by all the surgeries and chemotherapy and trying to heal from all the above that research into your diagnosis/stage/prognosis is delayed while you try to cope.

    Once you catch your breath and begin to investigate, it becomes clear just how much information you don't have in order to understand what your individual chances of survivability really are.  I don't know why physicians are not more precise and direct, but hope is always an empowering thing. They have expressed to me that if you ask the hard questions, then they feel that you're ready to hear the answers.  I fight hard, hope for the best, and prepare for the worst. Some days are better or worse than others.  I did make final arrangements and purchased guaranteed whole life insurance policies for my family and loved ones.

    I agree

    Your comments are so true.  When first diagnosed, people say "Don't go to the internet" even though you do and "Do your homework" , how can you do "homework" before your appointments without going to the internet?  The comment "Do your homework" is just something people say to make themselves feel better.  Every person is unique and their diagnosis unique also.  At my husband's first appointment after his colon resection he was given a sheet with stats that he fell into because of his age, his tumor's pathology, stage and some other criteria.  It was something like 88% survival which I thought was good until my husband said "Someone has to be in that other 12%"  3 months after finishing 12 rounds of Folfox he was experiencing pain and more problems in the bathroom.  He went to his PCP, surgeon, oncologist and gastro doctors.  He had his 1 year post op colonoscopy and was told he needed to lose weight.  No one suggested a scan or further tests.  One kind nurse practitioner at the gastro doctor's office kept trying to help him.  They thought he was constipated until she sent him for an x-ray and sent him right to the ED.  Inept hospital residents treated him for constipation for almost a week while we had to wait for 1 specific surgeon to see him (the 3 other members of this surgeon's team had been in to see him and done nothing) who asked where the scan was.  Scan?  what scan?  OF course no scan was ordered until 6 days into his hospital stay.  Surgery was performed the next day to remove a large tumor from his small intestines.  Surgeon said he would have been in really bad shape had they waited any longer.  3 days later I called his oncologist's office to tell them more cancer had been found (his CEA was going down the entire previous month).  Oncologist's office was connected to same inept hospital.  He finally showed up 3 more days later at 9 pm and dropped the bomb in a tone as if we should have known "well, now you're stage 4"  NO ONE had mentioned that.  I ran into our PCP (we used to have the same doctor) in the hall one day and he said something like "Well, I'm worried about those other 2 spots" Again, huh?  What other 2 spots?  My husband spent another 10 days in crappy hospital, developing an illeus a nurse would not address and then wonderful c-diff.  Follow up with oncologist 2 weeks later who yelled at us for coming in, not knowing he had c-diff.  He was about 1 hour behind schedule and told us from the hallway (while on his cell phone) that there were lymph nodes involved also.

    Our next action was to get a 2nd opinion.  We saw another oncologist the next day at the much bigger and better cancer center in our city.  He started chemo the day after that and former oncologist called to ask what we were doing.  I said "Getting away from you and nasty hospital" and hung up on him.

    So, I believe some of it is the doctor's faults and some may be part of our brains that block out bad news.

    Sorry for the rant,  Linda

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited May 2016 #19
    LindaK. said:

    I agree

    Your comments are so true.  When first diagnosed, people say "Don't go to the internet" even though you do and "Do your homework" , how can you do "homework" before your appointments without going to the internet?  The comment "Do your homework" is just something people say to make themselves feel better.  Every person is unique and their diagnosis unique also.  At my husband's first appointment after his colon resection he was given a sheet with stats that he fell into because of his age, his tumor's pathology, stage and some other criteria.  It was something like 88% survival which I thought was good until my husband said "Someone has to be in that other 12%"  3 months after finishing 12 rounds of Folfox he was experiencing pain and more problems in the bathroom.  He went to his PCP, surgeon, oncologist and gastro doctors.  He had his 1 year post op colonoscopy and was told he needed to lose weight.  No one suggested a scan or further tests.  One kind nurse practitioner at the gastro doctor's office kept trying to help him.  They thought he was constipated until she sent him for an x-ray and sent him right to the ED.  Inept hospital residents treated him for constipation for almost a week while we had to wait for 1 specific surgeon to see him (the 3 other members of this surgeon's team had been in to see him and done nothing) who asked where the scan was.  Scan?  what scan?  OF course no scan was ordered until 6 days into his hospital stay.  Surgery was performed the next day to remove a large tumor from his small intestines.  Surgeon said he would have been in really bad shape had they waited any longer.  3 days later I called his oncologist's office to tell them more cancer had been found (his CEA was going down the entire previous month).  Oncologist's office was connected to same inept hospital.  He finally showed up 3 more days later at 9 pm and dropped the bomb in a tone as if we should have known "well, now you're stage 4"  NO ONE had mentioned that.  I ran into our PCP (we used to have the same doctor) in the hall one day and he said something like "Well, I'm worried about those other 2 spots" Again, huh?  What other 2 spots?  My husband spent another 10 days in crappy hospital, developing an illeus a nurse would not address and then wonderful c-diff.  Follow up with oncologist 2 weeks later who yelled at us for coming in, not knowing he had c-diff.  He was about 1 hour behind schedule and told us from the hallway (while on his cell phone) that there were lymph nodes involved also.

    Our next action was to get a 2nd opinion.  We saw another oncologist the next day at the much bigger and better cancer center in our city.  He started chemo the day after that and former oncologist called to ask what we were doing.  I said "Getting away from you and nasty hospital" and hung up on him.

    So, I believe some of it is the doctor's faults and some may be part of our brains that block out bad news.

    Sorry for the rant,  Linda

    Beyond sad

    The story of your husbands treatment or lack thereof, has always shocked me, and made me angry. I don't know what constitutes malpractice, but surely some of what happened to him must fit that bill. 

    I have a freind, also with CRC, whose treatment from the beginning has been shocking, so it is not an isolated case, which is also frightening. 

    My heart still aches for you, Linda. 

    SUE

  • LindaK.
    LindaK. Member Posts: 506 Member
    Trubrit said:

    Beyond sad

    The story of your husbands treatment or lack thereof, has always shocked me, and made me angry. I don't know what constitutes malpractice, but surely some of what happened to him must fit that bill. 

    I have a freind, also with CRC, whose treatment from the beginning has been shocking, so it is not an isolated case, which is also frightening. 

    My heart still aches for you, Linda. 

    SUE

    Thanks

    Thanks Sue.  I can't believe it myself looking back.  But, again, what did we know then?  We had never been through cancer, chemo, etc. so we trusted and believed this bozo.  We only saw how bad it was when we went to the bigger and better cancer center.  As I have said, who knows if anything would have been different in the end, but I believe his problems 3 months after finishing chemo would have been addressed much sooner and maybe with a different outcome.  It was awful that he had to suffer for 3 months before they finally did the surgery.  If chemo started sooner, the lymph nodes may not have been involved or was it just a matter of time?  We'll never know and I certainly don't have the energy to fight them.  I have switched all my doctors and care away from that hospital.

    Linda

  • jen2012
    jen2012 Member Posts: 1,607 Member
    edited May 2016 #21
    wolfen said:

    Sue

    I think many times your heart refuses to believe what your head is telling you. Your heart is full of hope and as Craig would say "Without hope, we have nothing.". As I look back now, I believe I could see the truth written on the faces of both Debbie's and Ron's doctors even though the words were not spoken. Perhaps Debbie and Ron accepted it, but I was not strong enough to allow myself to.

    Luv,

    Wolfen

    I agree Wolfen and don't

    I agree Wolfen and don't think it's necessarily a bad thing.   I just reread an email to my aunt, about 2 weeks before my husband died (I still can't say and write that without feeling like I was punched in the stomach)  My email was so full of hope - yup, he's doing okay, they are working on scheduling surgery as they think the gallbladder is causing issues.  

    With my mom (not cancer) I had doctors telling me the last 3 months that she wasn't going to make it.  I refused to believe it.  Looking back I wonder how stupid I was to miss the signs.  It's so obvious as I look back.

    With my husband, I think his doctor knew us well enough to know that we needed that hope.  When she finally told us there was no hope left, it was only 4 days before he died.  I think there was a kindess there for all of us.  I'm sure she saw it coming and hoped herself that she could give him more time, but just couldn't :(   It would have been really hard if we had months with him on hospice, just waiting...

    Our 25th anniversary was yesterday.  I'm just sad and angry and sick.