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Trubrit's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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

 

vtspa6
Posts: 172
Joined: Aug 2015

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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
Posts: 1247
Joined: Apr 2012

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.
Posts: 494
Joined: Apr 2013

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

Trubrit's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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

MS2014
Posts: 59
Joined: Feb 2016

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's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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

MS2014
Posts: 59
Joined: Feb 2016

Hi Sue

Sorry for my late answer. When I saw your reply I wanted to write you but didn't have the time till now. Sometime I don't have time even to breath. 

As far as I know, the  farer you are from primary tumor the less chances you have to have a new tumor Am i wrong?  In any case you are the living prove against statistics. 

Those statistcis are at least 7 years old (if they have results for people who are 5 years alive it must be so). 7 years ago there was no Stivarga (e.g.)

I've been trying to undestand possibilities of my mother and as long as mets are in the liver, if there is sane liver, you can always opt for ablation or any other surgery to be NED again. Even microspheres are a good option for more extreme cases....

Well, the thing is options (for the good) are there. We are far from being in the best condition, but t doen't mean we don't have chances to be free of disease forever (Am I to naive?)

It Would be a great idea to open a thread for people with several liver resections. I have found several in this web, an many of them are NED.

All my best whises to you Sue

Alaska_Amp's picture
Alaska_Amp
Posts: 5
Joined: Mar 2016

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.

LindaK.
Posts: 494
Joined: Apr 2013

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's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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.
Posts: 494
Joined: Apr 2013

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

wolfen's picture
wolfen
Posts: 1325
Joined: Apr 2009

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

jen2012
Posts: 1607
Joined: Aug 2012

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.  

Trubrit's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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

JanJan63's picture
JanJan63
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Joined: Sep 2014

Thanks. Interesting...

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

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's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

to the article in the Journal of Clinical Oncology- I hope this works.  it it doesn't come up as a link, maybe it will work as a cut and paste: http://jco.ascopubs.org/content/early/2016/05/19/JCO.2015.63.6696.full

Grace/lizard44

 

 

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

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's picture
Trubrit
Posts: 5174
Joined: Jan 2013

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. 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

in reading the article, they were  not referring to all stage 4 patients as terminal, but to those patients whose disease was so far advanced and that they were considered by the doctors to have six months or less to live.

Grace/lizard44

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Our first year was confused by overformalized procedural analysis and reporting, with conflicting information, and not drs listening about prior nonstandard treatments.  The doctors were unprepared for what they found, the extra lab work requested, and nonstandard neoadjuvant treatment.  

We were being whipsawed by success. A concrete, dire prognosis was short circuited by the cellular destruction of the initial evidence with a localized complete response, the drs rigid chain of deduction, and rigid report on these things.   The mets showed clearly on CT and at surgery but those removed were rotting mush due to massive immune reaction. The one oncologist that directly addressed me on a dire forecast, 17 months, wouldn't explain his thinking or directly contradict (or elaborate) another dr on the pathology.  They all knew, but no one had the "smoking gun" yet.  (They would have needed a PET scan or an invasive biopsy at diagnosis). So Catch-22, all these mets supposedly didn't exist until confirmed by a second surgery.    Their plan was chemo and what will be, will be - with little warning since it wouldn't change their treatment much and would simply cause upset.    

The important things were:  it's deadly serious, time to get busy, take integrated treatment steps, and monitor things closely even when looking good.  

beaumontdave's picture
beaumontdave
Posts: 1053
Joined: Aug 2013

Hearing them say what I already knew wasn't going to help Cindy's spirits, so I didn't allow them to speak about time frames and prognosis. I won't hear of it should my situation take a turn. I don't need doctors telling me anything but whats the next course of treatment. I buy the occassional lottery ticket, so I'm perfectly willing to believe I can be 1 in 10,000,000, why not believe you can be the exception when it comes to this. I'd rather go out a cock-eyed optimist, because fear and anxiety are a waste of time and energy, even more so if you wind getting hit by a truck or something........................Dave

dancer2
Posts: 49
Joined: Jul 2016

hi, new here but my story began last Oct. when my surgeon found a tumor while trying to give a colonoscopy. The op was successful, got clean margins, 14 nodes were tested and found cancer free. But there was perineural invasion present and one liver lesion she tried to find laproscopically but could not find it. The pet scan showed one spot in each lung apparently to small to biopsy. Had biopsy done on liver and it was from the colon. Oncologist gave me three rounds of oxy with xoloda but stopped as my blood levels dropped and said since the lesion had not grown or shrunk that told him the chemo I was on was not working and he didn't want to do any more harm and sent me to an interventionalist radiologist who said I could have a resection but he could also do an ablation and since i liked the way he talked and assured me he could get it all and it would cure that one lesion and was good enough to tell me but that it was just for that lesion and others could pop up. After the procedure i went back about a month later and had contrast scan which showed it was successful and he saw no new ones in the liver or lungs. I was scheduled to see my oncologist a month after that talk but he (oncologist) made me go have another pt/ct scan and when he saw me he just said your liver glows and you have five new lung nodules and see you in three months. So i went back to the radiologist to see if he could enlighten me and he saw the disk from the scans and agreed with the new report which said basically I have four new lesions the largest one was 2.6 by 2.1 cm suv 6.8 and it glowed like the sun on the ct scan but the other three did not have any light in them. The pt scan ( he put them side by side) you could see two glow spots. But the lung nodules , tho now one is 8mm did not show up on pt scan. His advice was that he could ablate the large one and get it, but because of the other three were on the periphery of the liver he could not do that procedure but thought embolization (seeding) was probably the best way to go. I told him my oncologist who he thinks well of basically told me he could not give me chemo since he didn't know if it was from my melanoma or colon and yes, forgot to say earlier that I had just found out about a spot on my cheek right before my colon surgery was to be done and which was put off a few weeks while i went for a second opinion for that, of which ended in a flap surgery ( successful, clear sentinal node) in Jan.  By that time i had two chemo sessions behind me, had to wait a six weeks to have the third one. Went back for the fourth but he nixed it because of what i mentioned earlier....I am seeing another radiologist highly recommended to me who is a radiologist/oncologist to see what he thinks but from what i told him on the phone he thought that the emobolization was a good idea as he knew the radiologist and trusted his judgement and suggested i also go see my original (colon) surgeon because he thinks highly of her, to see what she thinks because she keeps up with the latest since she operates on colon/rectal cancers. So here I am, sitting and wondering how so many spots showed up in one months time. Since only the biggest one glowed on ct scan, the radiologist told me he could biopsy while ablating the big one. But he also said he was very certain they were from the colon. Was going to call a major center but after reading so much, i almost feel like I know what can be done. There are only so many things out there and if they can be done here why go? But will wait and point blank ask my surgeon and this new radiologist/oncologist who did mention immunotherapy/stem cell therapies etc...........as did the surgeon who did the op on the face which is or seems to be healing nicely as a big chunk was removed but was grafted......I will also ask them if going to a major center would give me any other choices..........any thoughts?  And my prayers go out to all of you because i have been reading this blog for months now and finally thought it time to join in....

Trubrit's picture
Trubrit
Posts: 5174
Joined: Jan 2013

That is quite the story. It seems like they all have you running from one place to another. 

Your post would do much better in a brand new thread just dedicated to you. If you follow this link http://csn.cancer.org/forum/128 and hit the Add new Forum Topic you can open a new thread, and people can answer you there. 

I wish you all the luck as you move forward in getting your leisions taken care of. 

SUE

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I wonder if it has to do with they way it's worded.  I've been told many times that I was stage IV and that the possibility of living 5 years was really slim (I think 18% in 2007) and I would be on chemo until I die.  However, I have never been told I was terminal, meaning I was absolutely going to die from cancer.  In fact, I've had more than one oncologist say that they are able to with some cancers treat as if it were a chronic disease, even for stage IV.  So to me, Stage IV is not good, but not terminal until they say terminal. 

Now my mother-in-law had stage IV lung cancer and her oncologist say unequivocally, and rather harshly, "you do know you're going to die from this" as my mother-in-law was asking about treatment options.  I did not like that doctor, and tried in vain to get her to dump the b!$@h.

I would say regarding the stats, when I was first diagnosed in 2007 Avastin had just been approved and there were no 5-year stats for FOLFOX with Avastin.  Did that make the difference, I don't know.  But to me the statistics are only good for the treatment you are on.  If they add something new, that changes things, so I pay little attention to the stats.  Plus, I want to be one of the ones that beat the stats!  Traci

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