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Asking for feedback - related to oncologist


Deb W

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Hi everyone,

This is long so please bear with me. 

I had some great news at my 9-week follow-up scan on Tuesday.
After my last infusion visit I mentioned that the oncologist used the word clear, and I wondered if that term meant the same thing as NED.  On Tuesday the oncologist said that I am in remission and have been since August. Since my recurrence this past April when I was staged at IV, he reminded that there is no guarantee that micro metastasis won’t occur again and there is no way to know.  He said that perhaps he is over medicating me, but the goal is to eradicate any invisible cancer cells.

Even with the fabulous news of “remission” it was a very upsetting appointment due to the following incident.  I had asked my oncologist if it would be possible to write a sentence or two in the portal before releasing the radiologist’s report on the scan.  Sometimes we get these reports by the radiologist and it can be a real challenge to understand them and sometimes they sound more serious than they really are.   He became so irritated with me and said I can’t do that….do you know how much time that would take - if the hospital made me do that I’d quit.  You want me to write some bullsh** about the scan.  That’s not my job - that is the radiologist’s job.  He asked if that had been done at the other system I was in and I said yes, it was…which infuriated him even more.  I was uncomfortable, and he calmed himself down, but I still don’t feel right about this now.  I work in the mental health field, and I would never speak to a client/patient the way he spoke to me.  Yet, I know he is the scientist and he’s up on all the latest literature - I trust that part.  I just don’t feel the same way about this guy.  I probably have the option to see someone else in this practice.  I am at a comprehensive cancer clinic, so I wouldn’t want to leave, but I think maybe I should switch oncologists.  

Would you be willing to share some of your experiences with your oncologists?

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Wow Deb.  My hunch is the oncologist was either having a bad day or there’s some behind the scene politics going on.  My oncologist disagreed with the radiology reports from February 2019 to August 2020.  My oncologist was the first to say “it’s only scar tissue” but it took a long time for radiology to get on the same page.  I’ve never seen my oncologist act in any temperamental fashion, he’s a steady Eddie.  
 

I’ve often said you don’t have to like your doctor but in the end you’ve got to be comfortable with the team.  I’d call him on the temper tantrum at your next appointment and if you don’t get an apology, then consider moving on quickly to another at the CCC.  

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Hi Deb: First of all let's celebrate the most important thing and that's your great results.

I have 6 nephews/nieces plus an one sons-in-law who happens to be the only oncologist among them(not lung cancer).  I learned to tolerate them since they have many moods and reactions that no one can explain or predict.  Oncologists are trained to read the CT scan and compare them to previous ones.  They are trained to look for obvious cancer and make a final assessment after they read the radiologist report and the lab test.  After explaining the results to the patient some of them dictate their findings to the nurse, some write it down and some type it directly in your portal. I got a phone call 3 hours after I saw the oncologist about my  Blood Clot because it was on the radiologist report that comes 2 or 3 hours later. Now I always wait for the radiology report before I make the final assessment.  Bottom line it could be that your oncologist was not prepared to do what you asked for. However he should have had the courtesy to explain it rather than getting upset. 

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First, congratulations on your remission! That is my goal someday. 

Your doctor's reaction is disconcerting. I've never had any doctor speak that way.  Maybe you want to ask the nurse or nurse practitioner for their take. Maybe this is his personality. (My oncologist is the opposite: upbeat and expressive.) Bottom line, if you're no longer comfortable with him, consider making a switch to another oncologist in the group. At this point, you're in a good place with your status, so you wouldn't lose continuity of treatment. 

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Deb,

First things first: a NED scan is worthy of celebration.

On your treatment by your oncologist, my first thought is about professional paperwork. All professionals have to do an enormous amount of paperwork that adds no value to their practice. When I was a consulting engineer in private practice, my liability insurance company made me do lots of time wasting activity to "protect them" against a liability tort. For example, I had to examine all my writing to clients to ensure I was not offering a "professional opinion" on a matter, and attach a memorandum for the record on each communication that explained why the material was not an engineering opinion. Otherwise, I needed to stamp the writing with my PE seal. That meant typing>printing>stamping>signing>scanning> and finally sending!. That process constituted a complete waste of time. Maybe your oncologist carries a similar burden affecting attaching written opinions on another professional's work.

Second, maybe your doctor was having a bad day. Lots of us have them and while there is little excuse for burdening an already suffering lung cancer survivor, it happens. I'd test this by waiting for the next consultation, and tell him that the reaction to the portal sentence request concerned or bothered you. Remind him you are enduring treatment and scans and results are significant emotional events. Remind him also that you are paying for his services. Then, assess the reaction.

Last, measure the amount of displeasure you suffered by the troubling exchange against the quality of the doctor's diagnostic and treatment actions. Not all of us are issued personalities. Professionals are sometimes insular. You mentioned scientific qualities. Scientists are "things" people and appreciate things more than people because things cannot talk back.

Having said all of that, on balance the most important reaction I have to your post is to celebrate your NED scan!

Stay the course.

Tom

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My take is sort of like Tom's--sometimes the demands for paperwork really do get ridiculous. That said, he should certainly not have taken out his frustration on you.

I think a big part of the problem is your trying to decipher what the reports "mean" in terms of your health. Maybe you could just ask that the reports not be posted on the portal till you've discussed it with your doctor. Seems like that would be a solution that would put no demands on him, while still avoiding the anxiety of a difficult-to-understand report. 

I do think, though, it's worth telling him that the way he responded caused you to feel your concern wasn't important. Maybe highlight the specific words he used: "bullsh*t," etc. Hopefully he'll choose his words and tailor his response more thoughtfully next time.

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Deb,

I'm with Tom, Lexie and others on this.  You do need to address it on your next visit.  Tom had a great approach to do that.  But if he stands by his original behavior you may need to look for someone who is also competent and better able to deal with you in a way that will make you comfortable to ask questions and look for additional insights.

And I love hearing the NED...all day long.

Lou

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Thanks everyone for the sound advice.  It was almost like he was purposely misunderstanding me...he probably did have a bad day.   I'll bring it up to him at my next appointment.  I was not implying that he should do the radiologist's job - just wanted his brief comments on the report.😠

By the way, I sent him two pics of my wrists through the portal as they were painful and a little swollen.  It was a new side effect that I hadn't experienced before and the first time I ever contacted him about side effects.  The fusion nurse replied and told me to keep them elevated and then he commented that it was good advice!  

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