What do you think?

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

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

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 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

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 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!!.   

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 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.

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. 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

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