New Here-Dumb things docs, nurses, etc say

[Thelurker]

Hi, I am new here. My friend (age 41) was diagnosed with stage IV cancer 10/08. She's had 2 operations and 3 rounds of chemo. Currently, probably going to have 3rd op in late Nov- early Dec.

Some of the things her docs, nurses, and insurance company have said to her are thoughtless. She is a REALLY strong person and shoves about 90% of it aside, but I can tell a bit of it bothers her. So, I commiserate with her when she needs it .

Don't get me wrong, I am grateful the docs, nurses, etc are extending her life (and I am praying she'll beat it).

I just don't understand WHY some of the medical profession says these things because I don't believe it helps patients during the battles they have to fight.

I just had to vent that. Thanks.

[BrownBagger]

What kind of things do they say?

[Terry]

Don't stop there, what kinds of things have they said? I had a doc tell me matter a factly "your terminal, there is no cure!". True, according to him. How does he know I won't be cured.

[CRguy]

You might want to chew over a few comments in this thread, and there have been many other threads since I joined in 2008.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=10270

I agree with Terry & BrownBagger, though, we really need a context if you want any intelligent answers ????? If you just needed to vent...then rant on. We all have those days.

In my experience and opinion, medical folks will say seemingly tasteless and thoughtless things for four reasons :

1. They are hardworking, caring, overworked, overstressed human beings who sometimes just get overwhelmed with their jobs. They have an imperfect human moment and "lose it."

2. They have had to be "hardened" to the reality and suffering in order to be able to do their jobs without self destructing. They have to distance themselves from the pain.

3. They do not want to give any sense of false hope to a patient who might be grasping at straws for their own chances of survival.

4. There are hardhearted and thoughtless individuals, regardless of what profession they are in. I have encountered very few in my own journey, but I do accept that not everyone in the medical profession is Florence Nightingale, Mother Teresa OR "Patch" Adams !!!

Don't know if these fit with what you are talknig about ??? They are not excuses for insensitive behaviour, just possible explanations for trying to understand folks on the other side of the exam table.

I have spent 30 years on one side. 3 years on the other.

Cheers
CRguy

[John603]

Hi Lurker,

My insurance company outsources it coordination of benefits and subrogation dept. The outsourcing company sent me a questionnaire asking if my medical claims were caused by a car accident or a workplace injury, even though the claims had come from a major cancer center with a diagnosis of "colorectal cancer". I really wanted to right back to them with a sarcastic reply like, " Yes, I was in a car accident where a Yugo rear-ended me and ended up in my butt. The resultant irritation caused the colon cancer." Unfortunately, my wife won't let me have any fun with them and made me answer No to both questions.

[txmom]

My dumb doctor comment, after being wheeled in for emergency surgery. By the way, this was not my doctor but a partner. "You have kids, family, husband? I said yes, five, husband and a lot of loving family. His response, "you have less than five minutes to say goodbye and make things the way you would wish, you may not survive this surgery" He handed me the phone and left. Thank God the real surgeon came in and mopped up his mess and yes I survived and am completely fine..idiot!

[Terry]

The burnout rate for an oncology nurse is 4 years. They have to become somewhat hardened and distant or they would be depressed. An oncologist does this all of his/her career usually. I couldn't do it for very long.

[Gaelen]

John - I got that 'was this injury caused in the workplace?' too - and I answered 'not unless I can blame it on the vending machines and the cafeteria...'

Actually, I think the dumbest comment I've ever heard from a medical professional was from Dr. Personality. HAI treatment sends high doses of steriods directly to your liver, and I was on it for 13 months. With it came weight gain - a LOT of weight gain (40# lbs.)
When HRH finally noticed, she said (you can't make this stuff up...) "Well, whatever you're doing for exercise, do more. And whatever you're eating, eat less."

Wow. Eat less, exercise more - is that all there is to weight control while on high-dose weight-gain causing medications which you prescribed? Man, I wish *I'd* thought of that solution. Oh -- wait -- does it count that I just walked from 35 blocks from 82nd and Madison to your office on 53rd and 3rd, and I did it in about 22 minutes? Does that cover the whole 'exercise more' thing?
I reminded myself that oncologists don't typically spend much time studying nutrition.

[hannahw]

It's official - doctors are human and just as dumb as the rest of us when it comes to saying stupid things, especially (but not exclusively) in awkward situations.

One of my favorite docs recently told an off color joke that, under "normal" circumstances I probably would have laughed at. But in that moment I really couldn't think of a less appropriate thing for him to say. I imagine in his mind he was just trying to lighten the mood, or maybe he just blurted it out because he was nervous. I glared at him and turned away. He came around me and apologized. Later we talked about it and he basically said that while he'd been a doctor for about 30 years he still felt inexperienced and unprepared handling the difficult moments that come up. What to say, how to act, that sort of thing. He also lamented how there's no class for this sort of thing in med school and while there's continued education requirements for doctors, none of them revolve around how to be less of a jackass when you're talking to a patient. He was quite candid about his shortcomings, which I appreciated. And it was an eyeopener to realize his insecurity because 1) of all the doctors we interact with, I actually think he is one of the best when it comes to talking to patients (that one joke not withstanding) and 2) I never stopped to consider that patient interaction is something doctors stop and stress about. After our conversation I started to wonder whether that was the thing he stressed the MOST about. The guy is a wizard in his field. His procedures are perfect. The whole hospital loves him. You mention his name and you can have pretty much anything you want. And yet he is accutely aware of his penchant for falling back on inappropriate jokes when he's uncomfortable. Go figure.

Aside from being human and being prone to the same sort of nerves and desire to fill silence (even at the expense of being appropriate) with words, docs are dealing with humans who are highly stressed and have different needs and expectations when it comes to how information is delivered. I think if we took a poll for how we'd like the oncologist to deliver Stage IV news, we'd likely all want something a little different. I want the brutal details. I don't mind hearing "there is no cure" because in that statement I don't hear "the end" I hear "the beginning of a new fight that's going to be long and tough and you need to be prepared for the ups and downs." But I totally understand someone who doesn't want to hear "there is no cure." The truth is, no one knows for sure. But how is the doctor to determine which type you are? And if you bring someone with you to your appointments, how does the doctor deal with the possibility that the person you're with has different needs and expectations when it comes to commuincation? There are all sorts of challenges adoctor faces when it comes to communicating with a patient. How much info do you provide in order to offfer the patient autonomy but without overwhelming them with a level of detail that does nothing to further their thinking on the issues in front of them? How do you open a dialogue with a patient who is making choices you really believe to be detrimental?

Of coruse, there are always moments that are just plain dumb and in that situation I think you just have to laugh. And hope that when your time comes and you say something dumb, that your doc will laugh with you. It happens to all of us, right?

[Candyys03]

Good post.Makes you think.
Food for thought-
We all have to vent it would be unhealthy if we didn't.
We all want to learn and share or we wouldn't be in the colon club.
We are all human,not perfect, make mistakes(hopefully not during surgery) and have bad days no matter what kind of job we have or do not have.
We all try to stay positive and as happy as possible through our cancer journey whether it's us, a loved one or a trained professional with a caring heart.
Candy

[KarMel]

I went to "the big university medical center" for a second opinion. Very nice man, overall, kind and concerned.
But...at the end of the conversation, he asked if I wanted to be on some trial/experimental drugs. I said, No, I'd like to stick with the tried and true for now. He said, that's OK, but eventually, you will be trying all of these. He was predicting failure and lack of recovery before I even started the first round of chemo.

Maybe the onc's just see so many who don't respond and don't recover that , while not trying to give false hope, they forget to give any hope.
My oncologist at home has been great.

[jmarie]

I had a really awful experience with this one nurse. It's a long story, but basicly she left me in a wheel chair for like 2 hrs when I wasn't supposed to be sitting at all, let my IV go bad on my last good vein in both arms(had to get a PICC line afterwards), tried to force the IV which was excruciating and because she forgot about me, my pain meds had worn off. After all this she comes over in a cheery type voice and asks "so, whats your story?' I honestly could have clawed her eyes out by this time. She had my records in her hand, if she had bothered to look at my orders, and care instruction she would have seen my "story".

Some of you have probably heard this story, sorry but this doc fits perfectly into the title of this thread. One of the docs that is in my OB's group has NO bedside manner. I was already a high risk pregnancy before we knew about the cancer and had been told when I was 3 mos prego I would probably be on bedrest by 6 mos. Four days before my dx(almost 6 mos prego), I went in because I had been having severe diahrea for a full month, off and on for a month before that. I had lost 20 lbs, was weak and pale as a ghost, I had some near misses w/ accidents at work. So I went in asking for them to fill out my FMLA because I didn't feel safe working. I worked in a hotel and in contact with a lot of people, didn't want to get anyone else sick. She gave me a 20 min lecture about how once she fills out those papers, no going back and I still had 3 months to go, so petty much "buck up soldier"and take a change of clothes to work next time. Which doesn't help when you have to walk 200 ft to the bathroom AFTER your accident. Did not get my FMLA paperwork. I was already scheduled for a flexible sigmoidoscopy 4 days later and the rest is history. I wanted to strangle her once I found out I had cancer! So 6 weeks later I have my baby, they had just found out the severe diahrea was from a C-diff infection. When my baby was born, I wasn't able to see her for 4-5 days due to the C-diff and not wanting to expose any other babies in the NICU. I was an emotional wreck between the pregnancy hormones, cancer dx, having my baby 2 mos early and now unable to hold or see her. I understood not wanting to get anyother babies sick and handled this descision for the first few days although it broke my heart. For the whole 2 days before seeing her I cried uncontollably. The last day, that same stupid OB came in on rounds. Was asking why I was so upset, really you can't figure that one out lady? Anyways she gets on the phone in my room and is talking to someone about getting me in to see my baby. She tells them,"she can't wait to see her baby, we don't know how long she has with her". So on top of emotional distress I was already under, she reminded me I may die anyday now and leave my newborn motherless. As stupid as this lady was and she shouldn't be talking to patients period, this call was finally what got me to see my baby. So I do owe that to her stupidity.

[weisssoccermom]

When I saw my first rad onc, he just drove me up a wall. So crass - yuck! He knew that I didn't want an ostomy (please no one with one take offense) but kept insisting that I would need one anyway. This guy hadn't examined me, didn't know anything but what he read on a CT scan report and he's no surgeon but kept pushing and pushing me to 'accept this". When he realized that I really did NOT want one, he told me about this surgeon who he felt would be great and allow me to get through surgery without one. So, he makes the referral for a consultation to get a permanent colostomy! This same doc also told me (very briefly I might add) about the vaginal stenosis/adhesions from the radiation treatments. Great, I though, another problem to cope with. So, he tells me to avoid it I should have sex or use a dilator as much as possible during treatments. Now, he didn't just say you should have sex - no he 'snickered' about it and gave my husband that 'you go guy look" so gross! When I asked him where I was supposed to get the dilator from, he shrugged and told me to just go to the 'sex toy store" (yeah right!!) and get myself a 'toy'. Throughout our first consultation he was so annoying. He kept offering me the "opportunity' to take some antidepressents. I kept saying , "NO, I don't want them". Well that wasn't a good enough answer for him - he kept pressing it which only made me more and more mad. Then he wanted to know "WHY' I didn't want the antidepressents. Isn't it enough that I know me and I didn't want them??? Without giving me a chance to answer - he flat out told me "well you know that I am on them" to which, (after this entire debacle with him) I replied " well you certainly aren't on a high enough dose because you're annoying!" I walked out and demanded another doctor. A week or so later, I meet the new rad onc, and while seemingly MUCH nicer, kept insisting on doing a rectal exam. I kept saying no, based on what the surgeon had told me that the rad onc did NOT need to do one, etc. Anyway, he put it off and told me that he'd do one in a few weeks. Well a few weeks later, he matter of factly walks into the room after one of my treatments, and asks me how I was doing. I told him that I was having my period (my second one during my treatment) and that I thought they were supposed to stop. He told me that (keep in mind I had already been told on the first or second day of my treatment that THAT period would be my last - HA HA!!) this one definately would be my last and to get up on the table as he wanted to do the 'finger wave'!(snickered too) What a way to describe a DRE - sick! I told him 'no way - I'm having my period" to which he said - "so what - it doesn't bother me". I told him it bothered me and no, I wasn't going to do an exam and the surgeon said not to - let the surgeon be the one to do it. SO this "nice" rad onc told me "well, if I had known you weren't going to let me do this exam, I would NEVER have agreed to become your doctor and I can't continue your treatments". That ticked me off so I asked him "so you're telling me that I should go home to die???" Boy was he tongue-tied after that reply! He stammered a bit and hemmed and said 'well no" and continued my treatments. Later he called our home and my husband talked to him and asked him if doing the exam would have changed his treatment plan and he said, 'well no - he just wanted to do one" I tell you - the whole 'finger wave' comment STILL bugs me and it's been over three years ago! If docs want to have their own terminology in the back rooms, that's fine but don't say stuff like that in front of the patients!

The other comment that still bugs me is something one of my then surgeon's nurse (not the one who did my surgery) said to me. She had called to schedule my surgery wayyyyy earlier than I had been told to wait after my chemorad treatments. I had only been done with the treatments for a week when she called and said that the surgeon (at the UW) wanted to schedule the surgery for two weeks out from that date. I was like 'no that's too early" and she said "well, Dr. H only has this opening and if you don't take it you're going to wait another three weeks after that and that will interfer with her vacation!" That kind of shocked me - particularly after Dr. H had said that I should wait at LEAST 6-8 weeks after the end of rad treatments and now this nurse was saying that only three weeks was enough! I also was concerned and having misgivings about having a total hysterectomy with the LAR (didn't end up having that surgery anyway) and all the problems associated with medically induced menopause. This nurse said, "Oh well, don't worry about it. You'll be in so much pain from the surgery anyway that you won't even notice the problems from going into menopause!" And THAT was supposed to make me feel better about it all! Needless to say , didn't go with Dr. H.

I know that the nurses, docs, etc are human, but give me a break about some of the things that they say! I would NEVER say some of the heartless stupid things to another human being, much less someone dealing with a potentially life threatenting illness!

Jaynee

[Joy]

On being given the diagnosis of Chronic lymphocritic leukemia. 'DON'T WORRY THIS IS A GOOD CANCER. I was shocked and fumbled for words and said "I'm a Colon Cancer survivor.....................WHY ARE YOU WORRYING ABOUT THAT YOU ARE CURED

This is from my general practitioner aka "Dr. No brain filter".

[Joy]

xxx