What do you do if your doctor lies to you?

You probably are saying - how will I really know?
Well, if you keep copies of all your test results, you should be able to tell by looking at the results and comparing them to the previous ones. My previous oncologist was what I call a "5 minute wonder", the doctor was in and out in 5 minutes, when asked a question about my cancer markers - I was told they were fine. Now having all the copies of tests done, I thought I must have missed a copy, because I could not find a current report on my cancer markers. I asked the office girls to find me the last cancer marker that was done, since I didn't seem to have a copy. Low and behold...... quite remarkably they couldn't find one that was newer than one year old.
I was FURIOUS! Me who keeps records of everything had missed it, and the doctor kept telling me it was fine........ well, I was what you would call
MAJORLY PISSED OFF.!!!!! I decided to go back and look at all my bloodwork, and found that some had not been done timely. I felt a 2nd opinion was definitely in order..... going to another oncologist (my current one), I expressed my concern about my markers, and he immediately ordered all kinds of bloodwork which had not been done. Unfortunately, when the bloodwork came back, my cancer markers had jumped quite a bit from a year ago. Now I was REALLY MAD!!! I went back and expressed my feelings about being lied to, and my first oncologist then became very defensive, and was upset because I had gotten a 2nd opinion. Tough!!!!!
After the "negative attitude" that doctor exhibited, I immediately changed oncologists. My message to you all is. Unless you keep track of your own numbers, and dates things were done, you are at the doctor's and staff's mercy. NO OFFICE PERSON OR DOCTOR IS GOING TO BE IN CHARGE OF MY LIFE!
Had I not found out that a year had transpired between cancer markers, and had gone along believing that I was getting the best treatment I could get. Who knows if I would now be headed toward my 9th year anniversary of survivorship 8/28/2009!!!!! Again - being totally informed may mean your life. If your doctor gets upset with questions about tests, etc. maybe it's time for a 2nd opinion - I'm so happy that I took charge of my own life. You need to also.
Love, Marion

Report post

14 replies. Join the discussion

Marion,

Power to you!!!

NO DOCTOR SHOULD BE IN CHARGE OF YOUR LIFE!
You must be your own advocate --- keep the test records -- blood tests --- MRI --- Pet Scans--- xrays --- Doctor Notes. Every document about you should be in your own expandable file or file box.
Make sure that the reports are correct. If there is something wrong or out of place ask the Doctor or Office manager to correct the over site.
More than once this record keeping has saved Debi or solved problems before they could start. If you have to use it in the ER (Heaven Forbid) Wow! What a tool to have in your battle against the beast (Alligator) or the DOCTORS WHO KNOWS EVERYTHING! Lol



We are people that question everything and everyone!
When we sit down with our ONC TEAM we are armed with research information and OUR FAVORITE

THE STATE OF THE UNION FORM

We print out this form in two copies

It has Debi's name and Birth date and requests it to be put in her file.
It high lights PAIN ISSUES -- PROGRESS ON TREATMENT USED -- QUESTIONS WE HAVE numbered in order
I can post a sample if that would be helpful.

It is GOOD to be MAD, PISSED OFF, GRUMPY
stomp your foot, throw reports if you have to.

IT IS YOUR LIFE!

GOD BLESS YOU AND HOLD YOU

Scott

Report post

I second these posts. Be your own advocate, keep all the paper work yourself.

Report post

Marion: Well done. You area fine example of why people should be their own advocates in their cancer treatment and care. Doctors are very busy but there are no excuses for telling you markers are find when you never had them done in the first place.

Makes me wonder - I am 15 months into my recurrence and on second chemo treatement, but my oncologist does not believe in the marker test becaues of false positives/negatives. I have to rely on 3 monthly PET scans for my health status.

Hang in there and keep on top of the reports!

Report post

I was in the same boat two years ago. I had to change hospitals. My former doctor, a 5 minute wonder also, actually called a psychiatrist to see if I was having a panic attack when he KNEW from my last CT scan that I had 2 pleural effusions. In order to get a second opinion and change docs, I got referred to another hospital. The first thing a nurse practitioner did was spend 2 and a half hours going over my tests and answering every question I had.

Report post

That was some serious butt kicking!! Yea Marion!! Woo Hoo!!

Report post

Oh I forgot to mention - I'm in my 9th year now, and I am in my 5th loose ring notebook -- all marked with dates.
We travel when we are able, and when we Rv'd to Alaska in 2007, I took ALL my reports and ALL my husband's reports, and those of our dogs with us.
Lucky too. We both got sick in Anchorage, luckily it was not critical, but if it had been, I was prepared.
I think sometime when I have time, I'm going to burn CD's one with All my bloodwork, in date order, and then one with tests, CT, PET,MRI's etc. Then do a duplicate to travel with, since I always have my laptop available. So glad that so many of you are keeping large files on all your stuff. Some of the important ones, like bloodwork while in chemo, I put on a coversheet, with various tests on top, and dates along the left side -- then fill in as I go. Then you can compare at a glance instead of going page by page. makes life much easier to look down a column.
Love to you all, you make my days when you reply to my stuff. I am not one to take a back seat to any doctor who isn't upfront, caring, and most of all DOES NOT THINK THEY WALK ON WATER, THEY BECOME FRIENDS AS WELL AS MY DOCTORS.

Report post

Marion, I am JUST getting to the point where I am finally becoming more proactive. I spent almost a year in shock and had to rely on my wonderful husband and daughter to do my research for me. Normally I am a true Virgo (anal, detail-oriented, direct). However I am now on point. Yeah!!!

Scott, please post the form if possible. I am in the process of collating my health files and attempting to put the records in summary form.

Finally, Marion, as a suggestion perhaps it might be more practical to put your files on a flash drive or if too big, on an external hard drive. CDs can be fragile when traveling.

Report post

Thanks for the tip. I keep my CD's for my computer packed in a lot of damage proof cases, we have an RV which is our travel mode. Have not had a problem in over 40,000 miles of travel since 1996. I keep my files by year, in l" loose leaf notebooks. that way it doesn't get overwhelming. As one book fills up, I take the really important ones (CT,PET,MRI,etc) and put them into the current note book. I also got copies of all my "Operation Reports" from you surgeon, it is quite interesting, as it tells a documented scenario of exactly what was done during the surgery. Very interesting, as you become more "medically oriented" you begin to be able to visualize the surgery that was done, and understand problem that you might be having. Just stay on top of it. Proactive = better care!

Report post

I am really lucky. I am in a program where I receive all of my health information including results of tests (blood tests, ct, mri, pathology etc). I also have a space to record my current medications - so if I am on the way to the hospital, it is a print and go, though we usually have a couple of copies ready. I can journal there as well. I love it. People are upset when they cant join. I was one of the last to be allowed to do this. My previous work was with an insurance company so they thought I was ideal.

Report post

Wow, Marion. I would be pretty pissed off too.
I have had problems like this as well. I'm kind of dealing with a similar thing right now, as a matter of fact. In moving to CT and pulling all my records together, I read recent scan reports and found items on them that nobody had mentioned to me (possible new lung lesions). At least I know now, and can watch these things with my new oncologist (who I LOVE!).
My old treatment center merged with a larger practice about a year ago, and they stopped giving me copies of blood-work etc. I requested them repeatedly, but still never received them. Then they wanted to charge me $25 for 3 pieces of paper to be copied!
Enough of them... I really liked my old Onc, but the practice went downhill with the merger.
Anyway, thanks for posting this. I think even those of us who have been doing this for a long time now can still get complacent and not follow-up on our records the way we should.

Report post

Right You Are my girlfriend--- COMPLACENCY CAN BE A PROBLEM. None of us, I don't think, ever gets over the knowledge that "it may come back". If you have all the records, you can begin to track your bloodwork, and you can read the test results. Sometimes we find things that they never tell us. It's best to keep on top of things. Best wishes in your new location.
There are so really good medical facilities in CT.

Report post

I can very much relate... I keep track of EVERYTHING for my Mom. She is 81 and confused alot due to drugs and age and is of the thought that Doctors are perfect and you never question them. NOT!

I am not thrilled with Mom's Oncologist but, he puts up with my many questions. I push him, I question his every move and I make sure that her tumor markers are checked every 3 weeks religiously. I TELL him that I want her to have another petscan and when.

He would be the 5-min. Doc if I weren't there... I think. I'll tell you that if I were your advocate, I'd be on your old docs website and letting others know how unconcerned he really is about his patients. This kind of thing makes me very angry.

You did the right thing and I hope your new Doc is spectacular!

Hugs, Judy

Report post

My new doctor IS spectacular! I have recommended him to many patients, who came back and told me how much they LOVE him and his "bedside manner", he comes in and usually starts by saying " Hey Marion how's it going!". he listens, he cares, he is young, smart, and wonderful. I am blessed that in our small community, he decided to start his practice here.
I am careful not to mention names, but it sure would make me feel better, if we could tell about attitudes of the doctors what we have left, and why.
My first one never even called to see why I never came back. That's how important I was to that office.

Report post

Thanks Marion,
I am 64 brought up in a patriarchal family. Born one year before the boomers. I have a five minute wonder doc also but I like him so far. The fact is having the internal spunk to go ask for everything scares me. I am so afraid he will get angry at me, he'll think I don't trust him and that he'll stop taking sufficient care of me. I know this is my right but it is scaring me.

I like my family doc who sent me to him. I will be visiting her on August 3, she gets a letter of report every month from my onco. I am going to ask her what she thinks and hope she will back me up or run interference or something. Sigh.

I believe so strongly in women's lib but running up against a man, still scares me. I suppose I can ask to be transferred to a women onco. I know they have some, also my PA is a women. I think I will test the waters this Tuesday when I go in for my Zometa. I have to ask him to back the Zometa down a touch as it is. Everyone says it should knock you for a loop for about a week and this last time was the second time and it was a full two weeks before I felt normal (not like I had the flu) again.
At the beginning this wasn't such a battle, it is beginning to be.
Worried,
PamW

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do