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Question about scan results...

lizbiz's picture
lizbiz
Posts: 121
Joined: Aug 2008

This sounds like a dumb question, but how do most of you receive your PET/CT scan results? Is it mostly phone consultations or face-to-face? What about those of you who go out-of-state for treatment?

I've had 2 scans previously and my ONC always called me the same day with the report. Today, I, as usual, called and left a message for him to call me back and was told by a nurse practitioner that they are now enforcing the policy of not giving any results over the phone. I explained to her that I'm out of state and it's never been a problem before...no luck. I now have to schlep the 3 hours at the (not even) butt-crack of dawn to Mass General for 5 minutes of "thumbs up" or "thumbs down". Worse, I have to wait 3 days for the results. Needless to say, I'm quite irritated: I'm a big girl, I've been through this several times and I don't need someone to hold my hand if the news is bad.

Sorry for the rant.

Thanks in advance for any info!

Hugs and prayers,
Elizabeth

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

but I'm close enough to drive. I would hope they would make the exception for you.
-p

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

My oncologist is in charge of the chemotherapy outpatient clinic at a small hospital 15 minutes from where I live. The hospital's radiology department where I get my scan is just a few yards down the hall from the clinic, and, anyhow, the clinic and radiology are connected by computer. The day after my scan, I drive to the hospital, go to the chemo clinic, and ask for my results. The staff all know me (that's where I did my chemo), and the receptionist types my name into her computer, finds the test result, requests a copy, and 2-3 minutes later hands it to me. It's a two page text report in the form of a letter from the radiologist (I don't see the scans themselves).

At the same hospital, but with a different patient (my mother) and a different doctor, however, it took me several days to get the results of a CT scan, because (as I found out later by examining a bill) the interpretation was done by a radiologist in Florida, thousands of miles away.

So I think there are various circumstances involving your doctor, his staff, the hospital, policies about patient access to test results, where all these people are and how they are connected, that determine how this works out for you.

dmdwins
Posts: 453
Joined: Aug 2008

I also receive my results face to face. The first time I had my scan and then returned about 5 days later for the results. I will NEVER do that again. The scanxiety was terrible.
I now schedule my scan early- go have lunch and then have my onc appointment to get the results.

My oncologist has a monitor in every room where he can look at the the scan while I am in the room. Those are some nervous moments. I trust that he knows what he is looking but if the formal report from the radiologist is not done at that time he or his nurse will then call when it is and then send a copy to me.

I would think that with the distance you need to go that it could be handled better. Maybe next time you could ask for the scan and appointment the same day so that you only have to travel so far once.

I will be thinking of you and wishing you GREAT results.

Dawn

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I get mine faxed to me the day after the procedure. ALL test results are done this way for me from every doctor. The exception is bloodworm. I'm there and I have it within an hour or so. By then I'm in the onc office and he hands me my copy. Here's the deal: this is a policy but they are YOUR tests. It is you and your insurance company paying for them. I would drive this time and negotiate while you're there for the next time. I would not leave until it was agreed and in your chart. I have gotten results by phone before but I prefer the written results so a fax or email works best for me.

Doctors don't like to hear that I'm impatient. LOL So, I tell them what they need to know: If it's bad news I need to be with my family to process the information and do some research so I am prepared for our face to face appointment; If it's good news I need time to process the information and do some research so I can ask intelligent questions at our face to face appointment. I just can't process fast enough during the appointment to ask the right questions and get the information I need from the doctor.

HTH,

Kimby

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

It's your reports and you should have access to them. I'm sorry, but I think that hospitals are getting to regulatory with your own records. I got my blood test done today and because my counts are so low I didn't want to wait until next week so the technician that took my blood gave me his personal number to call and he will let me know. Now that is someone I can deal with. I hope you can reason with them, especially with the drive time, and the anxiety level. No one knows exactly what a scan result can mean unless they have been waiting for one. Please let us know.

Hugs! Kim

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

I receive treatment at a large institution, also 5 hours away from me. I can't fight city hall - they will not fax the report directly to me, but they will fax it to a doctor's office. I fax a request for a copy to be sent to a local doctor who forwards the report to me. This allows me to review the report before meeting with my oncologist. I also do not think quickly enough on my feet to discuss a report intelligently with my oncologist based only on my doctor's oral summary of the report and without the opportunity to read and process it in advance. Do you have a local oncologist or primary care physician who might be able to help you?

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Elizabeth,
We have a lot of experience with doctors and hospitals because in addition to Dick's cancer our 12 year old has a number of special needs and medical issues. She has been to over 25 medical facilites...OK that said... we have come to learn that your medical records are yours. From the minute they are written and ready they are yours. You can go to the Medical Records department of the hospital and get any of your records released. If you contact them by phone they can walk you threw this. Now, that may tick off your doctor's office so you will need to decide if it is worth it. I believe Lisa did this not to long ago. She just went and got her scan results.
Hope it all works out.
Aloha,
Kathleen

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I found that Cat scans are normally read in a couple of hours and that the results are not known to us for a day or 3 so I marched back up to my ONCs office and informed them of what was told to me...I got a call at 3 the same day with my results...Im sure that a PET is not much difference, except maybe for a mobile unit ...our town is not equipped with their own PET scanner so they bring in a mobile unit every week to do any scans necessary.....

Im sure that there is a release form that will release your Dr from all liability that will allow him to give you your results over the phone UNLESS...His bosses above tell him that they do not make any money by calling over the phone, the only way to acquire any insurance premium payout is to bring the patient back to the office and charge them for the visit....another fleecing of America if you ask me.......

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

i just had my first pet scan and cat scan done at mass general 2 weeks ago and they had me go in for the result to and i 2 had to drive the 2 hrs. but they said that is how the dr liked giving the results

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I guess my question is how do YOU like getting the results?

Kimby

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

i just had my first pet scan after 2 and a have years i have had lots of cat scans. and when i read what you wrote it stopped me in my tracks. this is about MY treatment. and when i put it that way i want my results that day weather it is by phone or in person.so thank you for making me remember that it is or should be my choice.tammy

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Tammy,

This is quite the learning curve for all of us, isn't it? I hope I helped - I wasn't trying to be rude. I just get tired of doctors or facilities that have rules that make things more difficult for the patient. I finally found a place that truely believes that the test/lab results are mine, the treatment is my choice, that I matter. It is their job and career, but it's my LIFE.

Kimby

lizbiz's picture
lizbiz
Posts: 121
Joined: Aug 2008

Where is this place? I'd love to go there! I'm sick of arguing the idea of information ownership with medical people. It always boils back down to the cover-your-own-*** policy.

We've decided to wait until Monday (my chemo day) to get the results. I'd be freaking out a lot more if my CEA weren't stable, but it's been pretty consistently coming down and is now at 3.5. I am concerned, but it hasn't been the "OMG, I'm crying and puking in the shower" type concern. I just figure nothing I can do now will change the results, so I might as well chill out on this one.

I'll post an update when I get one!

Thanks, everyone!

Hugs and prayers,
Elizabeth

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

lizbiz. i will also be at mass general tomorrow[ mon ]i am going to take part in a study and tomorrow is my first treatment. i will be there at noon. so if you see a guy who looks alot like david crosby.that will be my husband please come up and say hi to us. tammy

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I am an hour away from my doc, so if he gets results late in the day, he calls me. Otherwise we schedule a doctor visit the same or next day after the scan or other tests. He never makes me wait.

Many hugs, Vicki

tiny one
Posts: 467
Joined: Jan 2009

I had my Cat scan screening done last Monday and finally knew the results the next day. It was normal. WooHoo. I will see my oncologist this Wednesday. He's my favorite Dr. I'm going to ask him if I will be defined as cancer free or NED. How do they determine that? I absolutely hate having these test done but collapse with relief when the results are good.

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