Proactive Patient == PITA??

Portal Forums Cancer Treatments / Symptom Management Patient Experiences Proactive Patient == PITA??

This topic contains 5 replies, has 4 voices, and was last updated by Dr West Dr West 3 years, 10 months ago.

Viewing 6 posts - 1 through 6 (of 6 total)
Author Posts   
Author Posts
January 10, 2014 at 8:49 am  #1261446    

mrkenney

OK here are a couple of questions for any of the docs reading this forum. Figure I’m never going to be treated by any of you so I can be open with my questions and you can be honest with your answers.

The CT scan I had this past Monday is supposed to be a strong indicator of how my treatment is fairing. Obviously I’m a bit anxious to hear the outcome. Having stage IV esohpageal w/mets liver I know my outlook isn’t hot even though I’m physically doing fine to the point I don’t have any symptoms – kind of makes the whole cancer thing a bit surreal right now.

So I jokingly asked in an email would buying a new car be a wise investment or should I just keep the junker running? I know you guys and gals aren’t god and can’t tell us how long we have and I sure don’t want to put my oncologist on the spot – I really like the guy, but I’d hoped in a light hearted manner my question could help guide an answer.

Would that rub you wrong?

Since I haven’t hear anything back and have been itching to know about my scan, I contacted the radiology firm and had them email me the summary of the report.

Are you OK with proactive patients like that or do they annoy you?

I hate to think I’ve ticked off my oncologist. He’s one of the best in the area and I’ve really like the rapport we’ve had up until this week.

January 10, 2014 at 11:07 am  #1261451    
catdander forum moderator
catdander forum moderator

I have to admit your question about the car brought a melancholy smile to my face. When my husband was trying to grasp what stage IV meant he ask his onc if he could get a puppy. Without much hesitation doctor said not unless Janine wants to raise it. It was the defining moment. Now we, my husband and I would have a 4 year old dog to go along with our 3 elderly dogs one of which is living well past his objective life span just as my husband is.

With you feeling so well it just isn’t feasible for anyone to guess how long you’re going to live.
Oncologists know how anxious people get about scans. We have a word for it, scanxiety. ;) Doctors don’t like to give news about your scans over the phone and hopefully make an appointment to go over the report as soon as possible. I hope you’ve got an appointment soon? Having a report without the input of the onc is also not wise because the report is written with a nonbias look by a doctor that doesn’t see patients and puts a lot of info in it that often doesn’t apply.

You sound absolutely fine, not at all out of order so I can’t imagine a doctor being put out with someone who put the question in the form of a new car. By the way, get the car!

Janine

January 10, 2014 at 12:06 pm  #1261456    

Dr. Ben Creelan

I agree with Janine – scans are best discussed in person. There are a lot of nuances in interpreting the scan, and the written report can sometimes introduce red herrings. I think it is good to be proactive, and it is fine to ask about prognosis and making financial decisions. I don’t think it should rub them the wrong way. I would definitely pick the Top 3 questions to ask first, in case there isn’t time to review many questions in one visit. Good luck.

January 10, 2014 at 12:32 pm  #1261458    

mrkenney

Scanaxiety – love it. I’ve been more anxious about this than I was between the time I found out I have cancer and meeting my oncologist. And yes I have an appointment first thing Monday morning – it just makes for a very long weekend. Thanks for the comments. I do appreciate them.

Now to go take a little pink happy pill and chill out. :wink:

January 10, 2014 at 3:19 pm  #1261464    
catdander forum moderator
catdander forum moderator

Excellent, I hope it helps shorten the wait.

January 10, 2014 at 7:46 pm  #1261470    
Dr West
Dr West

Mr. Kenney,

I was thinking two things as I read your question:

1) I don’t think discussing scan results is appropriate via e-mail or a phone call, so I always plan to have these conversations in person (ideally with a short interval between scan and visit, and most commonly actually on the same day, 90-120 minutes apart — I’m happy to be able to coordinate that with the radiologists at my center). So as Janine and Dr. Creelan noted, I think that’s likely a major if not the only factor here.

2) I welcome frank discussions with patients and think they’re very healthy, but oncologists may well be tentative about initiating them. Having a patient invite the conversation is not just completely appropriate but perfectly great, and I hope that your oncologist can have a thoughtful discussion with you, even if he won’t give you a precise number (I hope not, because that kind of “you’ve got X months to live” statement is total crap and should only be found in bad made for TV movies).

Of course, discussions about the results of treatment and prognosis are sensitive, with communication that is non-verbal/non-written, and not just a transcribed script. I’d hate to have what should be a nuanced discussion about prognosis via e-mail with a patient, and I prefer not to do it over a phone either.

Good luck with your scans (and the answer to your car question).

-Dr. West

Viewing 6 posts - 1 through 6 (of 6 total)

You must be logged in to reply to this topic.