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Decoder Ring For Doctor Speak

TheLadySkye's picture
TheLadySkye
Posts: 195
Joined: Oct 2013

I've been thinking a lot about what my doctors say, or don't say as the case more often is. I'm being treated at a cancer center, but for some reason all the doctors there seem terribly reluctant to discuss prognosis. Which seems strange considering that's probably one of the most important things to the patient. It's like pulling teeth to get an answer, and even worse to get a specific one.

When pressed, my surgeon deferred to the rather dismal statistics for small intestine cancer (because he doesn't have any others and isn't partial to making them up. Point, surgeon). However, he added he expected that I would do well. I don't know what that means and he didn't elaborate. Better than the six months most folks get after diagnosis? Well for awhile? Well forever? What does that even mean?

Apparently he told my husband that it looks like they got it all and caught it in time, but would wait on pathology. What does that mean? In time for what? Does "they got it all" mean recurrence is not expected? For a time, I hoped so. Alas, my surgeon moved away and the new one I was assigned too is not nearly so positive. He stresses the high recurrence rates and seems loathe to offer any hope whatsoever, but I acknowledge he was not the one elbows deep in my guts, and so I suppose that makes a difference. Maybe. Does it? I guess I'm not really sure WHAT the surgeon "sees" when he opens you up, or what's even visible. The small intestine is crap for visualizing in scans, but if stuff is internal to the wall, would one even know if there was only the one tumor? It certainly makes for challenging follow up.

Back to prognosis. What do their words even mean? Numbers I get. Though statistics can't speak to YOU, they're a starting point. I can work with those. I am less sure what it means when someone says the prognosis is good or fair or poor. What does that mean? How does one translate that? And is the prognosis for the immediate, or for the foreseeable? For instance, if someone says your prognosis is good (wouldn't that be super?), does that mean for now? For a year? For two? For forever?

I know, docs don't have a crystal ball and neither do I. It just occurs to me that the more I think about what I THINK I know, the less I actually KNOW what any of it means.

Thoughts?

Trubrit's picture
Trubrit
Posts: 5004
Joined: Jan 2013

and I'm thinking. 

I'm off to work, with my Doctor. OK, he's not an Oncologist, but maybe I'll see what he says.

Truth is, I bet they don't know what they mean. Its Doctor speak. At church, we have church speak. If you're not a member, then you could be quite up in the air about what we're on about, and then, when we really look at it, do we even know what we (as in church memebers) mean. I'm beginning to think the answer is no 

I love this post. I love the way you have worded it. 

I'm looking forward to coming home from work and seeing all the replies. 

Sue - Trubrit

LindaK.
Posts: 490
Joined: Apr 2013

That is the question

While my husband was in treatment, we never really looked much up on the internet.  We trusted and believed in our doctors.  The first time I felt that "stomach drop" news was when my husband needed a stent in his bile duct because one of his lymph node tumors was pressing on it from outside the intestines.  I read about it and when I saw something to the effect of "prolonging a cancer patient's life 2-6 months" I was shocked.  I had no idea he was that close to "the end".  Also, when I got copies of his scans and health records after he passed, it seemed like his cancer was worse than they ever told us.  On one hand, I was kind of glad we didn't have that doom and gloom for 6 months, but then again, it kind of came as a shock in September when he was given the "there's nothing more we can do" talk.  In August they had told him the average life expectancy was 2 years and then in September they gave him weeks.  I will never forget that talk in his hospital room.  I guess being on the other side, I'm mostly glad they did not give him dire news until it was dire.  He was fighting right up to 10 days before he passed away.

So, I would admire doctors who are more upfront, but to give us all the news on prognosis, not just the best scenario.  No two patients are ever the same, so they can't be exact, but a reality check can be good or bad.

My two cents... Linda

NewHere's picture
NewHere
Posts: 1146
Joined: Feb 2015

There are no promises (which I know you know).  So I think it is a combination of (a) doctors have different bedside manners, (b) patients have different expectations of what they want to hear and (c) the combination of (a) and (b) coming togethe.   ((a) and (b) are going to have a multitude of types :) )  

If I feel I am being not quite being paid attention to in the questions, I will say something to make them understand I am not quite as clueless as I look :)  In the current situation (my cancer fun and games) I have not had any push back on things or what I felt was sugar coating.  Which is the way I want it.

I have been working through this from expecting the worst each step of the way and hoping for the best, which includes getting the answers straight from the docs. And I think I have made it clear to the doctors that is my approach.  Give me the information straight so I can process it.  With so much out there on the internet, I wanted to hear from them.  For instance, I am Stage IIIC and when I had the talk with the doctor I said "53% chance I am in here in 5 years."  He said it is a tad higher now, but that is generally accurate as an overall stat.  The surgery went well with clean margins, he is happy.  The onc is the same way, straight up with stats.  The numbers are 53%-60% of it coming back or mets (think I have the numbers just about right) and chemo knocks it down to 25%-30%.  He also told me that the first two years, from what he has seen, are when this will usually poke its head back. Did not ask for a number, just a general impression.   I couched my question as "I know everyone is different and nothing is set in stone" etc. In other words, I am not going to come back kicking and screaming when it shows up again in year 3-5 (hopefully not), but trying to get a sense of what he has seen. 

Hooked up to 3rd session of chemo yesterday.  Was told as far as they were concerned I was cancer free and this is just adjunct to track down and wipe out any micrscopic mets in the bloodstream through the lymph nodes (I had a ton light up, over half of the 20 or so they took were cancerous).  So who knows.

Your right as a patient is to ask any and all questions that come to mind and have answers that are understandable to you, so make sure you get them from your doc.  (I have some reports where the say what the words probable, possible, maybe mean as percentages, but sometimes I think those are off also.  According to one, if I read it correctly, I may be pregnant ;) - Sorry, I got to keep joking just a bit. )

 

 

 

 

alabama_survivor
Posts: 85
Joined: Nov 2014

I am from the breast cancer board, but "lurk" over here since my brother has colon cancer, and my sister has rectal cancer (Both Mom and Dad have had cancer, so that's 100% in one family).  My cancer was stage 3C, and there was a couple of very tiny spots on my lung which could literally be anything, but because of that, the oncologist was always hesitant to answer questions about prognosis.  The other thing is that, statistically, 50% - 70% of women with my type of cancer are still alive 10 years from now.  But what all of us have to remember is that that statistic is for women who were diagnosed and initially treated 10 years ago, and cancer treatment has come so far since then.  So really, they just don't know.  Every person is different, and every cancer is different.

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Hi,

I think that doctor's don't want to give false hope but don't want to be doomsdayer's either - so normally they stay somewhere in the middle? Some people don't want to know statistics, while others do. Some people defy statistics and make it despite a "no hope" prognosis...Cancer can be hard to pin down and put a number on because there are so many variables - which is crazy making if you're just diagnosed. I've never had a surgeon or oncologist tell me I would absolutely recover...they did tell me I would absolutely die and I'm now cancer free...for the first time after lung mets so? There really are no absolutes IMHO.

Carrie

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