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Unread 24 May 2006, 15:19   #1
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Doctors and their Social Skills

Tom has cancer, we all know that (well you do now if you didn't).

I had a checkup today, as I have chemo on Friday (it's bi-weekly) so it's routine. The last couple of times I've gone it's involved waiting around for over an hour, going in, him asking if I'm ok, me going yes, and him going "super, off you go".

Anyway LAST time he said to me that my scan results had come out very positively, everything was going swimmingly, and I'd be finished very soon (or maybe even sooner than anticipated).

So my dad and I went along today (he comes to the hospital each time with me, I think he likes the time off work) with the expectation of either non-news or good news.

He starts off with this little icebreaker:

"Well how much have you read about your type of lympoma?"

"Not much - there isn't much on it as it's quite rare - that's about all I could find on it"

"Right... well there's a 40% survival rate for the 5 years after treatment"

"You mean 40% survival rate of the cancer?"

"No... of the patient"

Then he immediately changes the subject while I'm pretty much reeling from the news that only FOUR IN TEN PEOPLE SURVIVE THE FIRST FIVE YEARS. Thanks Doc!

After I digest this and blink back these tears that have somehow appeared in my eyes, he goes on to then say that it's difficult to say what will happen as it's so rare, so there isn't much documentation.

He then goes onto say that after my chemo, I won't be able to just go home. I'll probably have to come back into hospital for 2-4 weeks to have a transplant.

Now for some reason he keeps reassuring me that the transplant is perfectly safe, even though I hadn't looked worried or said anything. This immediately GETS me worried and raising my eyebrow.

Oh - another little gem of news - there's a 5% mortality rate for the transplant they want to give me! But I get to choose if I get it. Basically if I don't there's a good chance the cancer will come back (relapse).


So my situation has gone from him saying 2 weeks ago "everything is peachy, this PET scan is better than we hoped for, you'll be done in 6 weeks max" onto "well you might be ok by 6 weeks but even then the chances of relapse are high so we want to give you a stem cell transplant".


Now the thing is - nothing has actually changed. I knew I'd be having 3 more chemos. I knew that I'd probably have to continue with some form of treatment after. That's fine.

It was the way he pitched it. He launched in with the 60% mortality rate figure (which, to be honest, I didn't need to know until they were trying to convince me the transplant is a good idea) and the 5% mortality rate figure, and then told me the good news. Which is completely the wrong way to do it.

It was only after on the train, when I was processing the information, that I realised this. When you're in a doctor's surgery and he's throwing these horrible figures at you (let's face it, 40% is the wrong side of half the population) you aren't going to be listening much after that.


I just wish the NHS would spend a little bit of money training doctors in how to speak to patients. Even as a teacher I know from parents evenings that you cushion them first with some good news before launching in with the worst news imaginable.


So I was a bit cut up about it. I'm ok now - I figured 40% over an entirety of people with my type of lymphoma, over a timespan as large as 5 years, isn't as bad as it initially sounds (thanks doctor!). If you split it down, it could be 20% mortality in the first year, then 10% for each subsequent year. And this also takes into account old people, unfit people, unhealthy people. Etc. So I was a bit upset (and slightly tearful, but was in front of my dad and a bunch of commuters, so had to be manly!) but now I'm ok.


Sorry that this is long and not very interesting for some of you, but I don't have a blog and I needed to get it off my chest. I don't really expect many replies so cheers for letting me vent on here.
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Unread 24 May 2006, 15:26   #2
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Re: Doctors and their Social Skills

Oh internet hug!
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Unread 24 May 2006, 15:27   #3
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Exclamation Re: Doctors and their Social Skills

Oh, the humanity!
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Unread 24 May 2006, 15:27   #4
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Re: Doctors and their Social Skills

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Unread 24 May 2006, 15:27   #5
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Re: Doctors and their Social Skills

Did he mention any specific details about your chance of surviving or can't he say because of its rareness?

Also, internet hug!
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Unread 24 May 2006, 15:28   #6
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Re: Doctors and their Social Skills

what kind of lymphoma was it again?

i'm surprised you didn't look up everything the day you were diagnosed.
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Unread 24 May 2006, 15:28   #7
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Re: Doctors and their Social Skills

Quote:
Originally Posted by Tomkat
"Right... well there's a 40% survival rate for the 5 years after treatment"

"You mean 40% survival rate of the cancer?"

"No... of the patient"
was this a joke or a serious question?
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Unread 24 May 2006, 15:30   #8
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Re: Doctors and their Social Skills

Doctor's ARE trained in patient handling but the trouble arises once they're qualified - they can say basically what they like, how they like and noone's gonna be there to call them on it.

Doctor's are like any other professional - some are really considerate and think a great deal about how their position of power affects the people that they deal with. Other's are absolute ****s.

Chances are he sees you as 'just a number' (i'm sure you know all about this from your teaching) and is not doing a very good job of trying to cover that fact up.

Sorry to hear that TK, but like you say, the %s are taken over the entire population and would include Mrs Moggins with her double heart bypass, iron lung and septic leg - so stay positive mate.

I'd be fairly sure that whatever type of Lymphoma you have (as rare as you say it is) it's far less common in healthy 20 year olds than it is in older people.
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Unread 24 May 2006, 15:31   #9
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Re: Doctors and their Social Skills

wtf? they seem to have neglected telling you about a large amount of your ****ing treatment.
That really sucks. I'm sure you'll be fine though, really fit and stuff. Do your school + kids know everything? or just that you're "ill"?

[I bet someone was going to ask who gets the psp if you die, but it wouldn't really be that funny ]
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Unread 24 May 2006, 15:31   #10
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Re: Doctors and their Social Skills

i feel for you I've seen lots of doctors (though never for anything this serious), and it seems the more important/qualified they are, the worse their bedside manner is.
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Unread 24 May 2006, 15:37   #11
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Re: Doctors and their Social Skills

i've got good faith in you tomkat to survive

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Unread 24 May 2006, 16:36   #12
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Re: Doctors and their Social Skills

Doctors didnt become doctors to speak I guess ;/

But my limited experience with doctors is they are quite blunt and too the point.

Really shit news there but im hoping it will all turn out right (it better had)
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Unread 24 May 2006, 17:09   #13
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Re: Doctors and their Social Skills

Quote:
Originally Posted by Tomkat
So I was a bit cut up about it. I'm ok now - I figured 40% over an entirety of people with my type of lymphoma, over a timespan as large as 5 years, isn't as bad as it initially sounds (thanks doctor!). If you split it down, it could be 20% mortality in the first year, then 10% for each subsequent year. And this also takes into account old people, unfit people, unhealthy people. Etc. So I was a bit upset (and slightly tearful, but was in front of my dad and a bunch of commuters, so had to be manly!) but now I'm ok.


It might be an idea to get in touch with the doctor and find out what research/clinical papers etc there are that you could look at relating to your cancer. The 40% survuval rate might be people who are still alive after 5 years period. The figures might not take out people who died of car crashes etc. If i were you i'd want to know my chance of survival as close as possible (although it doesn't really matter ... you will be fine ... i'm sure of it).

Also, STAY POSITIVE! Maintaining a healthy attitide towards the illness will help you (apparantly ... i believe it will anyway). Plan for the future. Try not to get depressed. And laugh alot (giggle like a little school girl).

This shit better not **** up drinking in Glasgow in September!!!
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Unread 24 May 2006, 17:48   #14
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Re: Doctors and their Social Skills

That sucks TK






Can I have your stereo?
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Unread 24 May 2006, 18:04   #15
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Re: Doctors and their Social Skills

Internet hug!
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Unread 24 May 2006, 18:57   #16
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Re: Doctors and their Social Skills

Obviously what is needed for doctors is a "Yahwe explains: Bedside Manner" thread which could then be copied and sent to every doctor in the world.

Another thing to consider is that doctors often exaggerate the negative side so as to prepare patients for the worst and especially if they are talking surgery it helps protect them from law suits later where patients say, "but you said there was nothing to worry about, that it was a snap procedure but now my testicles are missing."

Did he explain to you the testicle thing, btw?
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Unread 24 May 2006, 19:03   #17
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Re: Doctors and their Social Skills

Quote:
Originally Posted by Dace
This shit better not **** up drinking in Glasgow in September!!!
Errr yeah, about that.

Found out last night my mum wants to organise a "family holiday" in the first week of September, which is the same time as my mates going up to Glasgow

But!

Looks like I'll be having more time off work etc, seeing as I get paid for the summer holidays and won't be spending much of it. So I might just come up on my own when this is all over.

Oh yeah - I was thinking more about this 40% thing (and asked my dad). We've realised that this figure is pretty ridiculous (and wondering why he even told us it actually):
1. He gave that figure then gave no comparisons to it (ie: this is what it is if you DIDNT have the treatment, but if you DO it becomes xx %), which makes it pretty pointless.
2. He didn't tell us how many people this is for. And based on how rare my lymphoma is (extremely) I wouldn't be surprised if it was less than 100 people. Which isn't really a significant number.
3. He didn't tell us how long this 40% figure has been put for. I mean it could just be over the last 10 years, or it could be from the last 20-30 years. In which case of course mortality is high, as lymphoma treatments have taken leaps and bounds in the last 10 years.



Also I don't know if I made it clear in my first post. I haven't definitely got a 40% survival rate. That's if the cancer comes back in the next 5 years. It might not come back at all, if I'm lucky. It's based on a whole host of things.

He told me that figure because he said that they're probably going to recommend the surgery treatment, which would reduce the chance of the cancer coming back (and therefore INCREASE the figure from 40%).

I'm being as unclear as the doctor was
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Unread 24 May 2006, 20:27   #18
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Re: Doctors and their Social Skills

I have alreadytold you what is going to happen.

No matter how much you try and raise my hopes by quoting some overworked lab-technition (who had probably forgotten who you were anyway), I refuse to be baited.

Unfortunately you are going to survive.

P.S. (in re your other thread) now you have all this time on your hands could you be a dear and learn the difference between less and fewer? there's a good chap.
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Unread 24 May 2006, 21:22   #19
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Re: Doctors and their Social Skills

Quote:
Originally Posted by JonnyBGood
Oh internet hug!
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Unread 24 May 2006, 23:21   #20
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Re: Doctors and their Social Skills

Hey dude, if you can't make it, can I have my porn back?












































Seriously though, I hope things gets better for you. Just think of Gloria Gaynor's song "I Will Survive" or something equally survive-esque.
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