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Do you prefer results face to face?

jen2012
Posts: 1607
Joined: Aug 2012

Just curious.  My husband's doctor will not give scan results over the phone or email.  Insists on face to face and the waiting drives me crazy.  It would be my preference, and my husband's, to get the results as soon as they are available and have a chance to process things and then meet with her.  I don't understand the thinking behind the dramatic reveal in her office.   Especially when we have to wait a week.  Do doctors not understand or care how anxious we get waiting, waiting, waiting??

Not going to change her mind, I'm just curious if the majority prefers to get results face to face?

Cathleen Mary
Posts: 827
Joined: May 2011

My oncologist has the same policy as your husband's....I think with good intention though it always seems a bit paternalistic to me. My preference was to know the news as soon as it was available. Scan reports are not put on the patient portal system for onc patients until after the meeting with the oncologist.  However, three years ago, I asked for the info when my onc was out of town and the info was not very good news. I did find myself wishing it was in person. That said, I still think my preference is info as soon as is available.

CM

janderson1964
Posts: 2215
Joined: Oct 2011

I like results as soon as they are available. I usually get my scans early in the morning. I request a copy of the disc once the radiologist report is on the disc which has always been the next day for me. The disc should have all of the images and the radiologist report. That way you dont have to wait. However my oncologist will email me the report as soon as he receives it so I would fight with your oncologist about it. As a warning a lot of times the report will mention every little area of concern which many times ends up being nothing. I think most oncologist leave that information out on face to face consultations. I know mine does unless I ask about it. It's good and bad. In one sense it is good to know EVERYTHING but as you know we spend too much of our lives worrying so I can understand shielding us from uneccasary worrying. I shield my wife from some of it as well. I just can't put her through any more worrying and stress unless I know for sure there is a problem.

danker
Posts: 1253
Joined: Apr 2012

I always just assumed that the resusts would be favorable, so never minded waiting to truly find out.  Try it!  That way no anziety(spelling).

jen2012
Posts: 1607
Joined: Aug 2012

I really really wish we had that peace of mind. Unfortunately at stage 4, it's pretty hard to assume the best, especially when blood tests are saying different.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I like results as soon as possible too.  UMHS has a patient health portal where they display results. HOWEVER, the doctors have to approve the results before they show up in the portal. I personally think the radiologist reports should show up immediately, as soon as the radiologist signs off on them..  E.g. when my doctor receives them, so should I.

I think having them filter ther results is a little old. When you go through what we go through, we want to get updated quickly and without holding anything back.

Then the conversation with the Onc is more about what do we do, and what does it mean...

I will add, my oncologist has called me when reoccurances were found.  And I remember one time he called while I was driving and told me very quickly that the scan detected a new tumor...  Probably not the best position to receive this news, but then again, I have been pretty level-headed with all recurrence news.  Its not the same as the first time you hear "you have cancer."

I do remember that first time.  And driving home in a daze. And thinking I lost my wallet (fogot that I took it out of my pocket and set it in my closet shelf, where I change). WOW. That was true shock. But nothing like that since the first time realization.

 

jen2012
Posts: 1607
Joined: Aug 2012

My sister got the news that she had cancer by phone..she was at work.  Not the best way!  But like you said, scan results are are different than the initial diagnosis.  

NewHere's picture
NewHere
Posts: 1200
Joined: Feb 2015

The big reveal does not work as well for me.  If they have results, tell me, even if ballpark  I get that some of the Devil is in the details where face-to-face can fill in some blanks, but along this process so far I can get a pretty good sense of what is going on by being told.  I also come from the spot of assuming the worse case scenario and brace for that.  

neons356
Posts: 58
Joined: Dec 2010

I once complained to the receptionist, and she told me that that way they were able to charge my insurance company for the visit.

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I think the doctor and patient should discuss this in the first meeting...pros and cons of getting the info before the visit.

Some folks don't want the details and want to rely solely on the doctors words at the visit.

Some folks want to have the opportunity to review the results and get their questions and concerns in order before the visit.

I feel if the patient is mentally stable and feels they can handle whatever news they get, they should have the right to the info as soon as it is available.

Of course there is always the alternative that the doctor schedules the appointment for the day the results are available.  That is what my sister's doctor did...he knew he would have the results the following day, and that was when he scheduled her appointment with him.  No long wait.

Bottom line, it is our life, and we should have the choice.

Marie who loves kitties

jen2012
Posts: 1607
Joined: Aug 2012

Yes, we are discussing with her tomorrow.  Now I wouldn't want her to call my husband at work with bad results, but he has told them time and again that he wants me to be their go to person with questions or information, so they can and should call or email me.    His doctor really only does office hours on Thursday, sometimes tuesday, but not often it seems.  Pet scans are only done on Fridays so that means always waiting almost a week for pet results.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but after a year or so of scanning, I insisted on getting the results via email, so I could absorb the info before the actual appointment.  I also had him post the scan report, so I could read that myself.

He didn't like this, but by law those medical records belong to me, so they have no right to withhold them, esp not for a week!

I got my results within 24 hours (usually within 4-6 hours actually, which just goes to show how fast they have them ready to go).

I can understand the "wait to talk to doc" approach with newbies, but once you're a veteren, like your husband, it's time to start giving the patient a little more autonomy, imo.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

I had a CT scan yesterday and I am waiting on results right now.  If I didn't get my results the next day I probably would change oncologists.  Cancer is stressful enough without the torture of waiting.  Also, every time I see my Dr I get charged a $50 co pay.  I don't need to see him for NED, hopefully!  I already pay my maximum out of pocket every year $2,500.  All of the $50 co pays add up. I guess it's an endless cycle for us cancer patients.

Sandy

jen2012
Posts: 1607
Joined: Aug 2012

Good results Sandy?!  I hope so!

Coppercent
Posts: 158
Joined: Jan 2012

I prefer getting mine face to face.  I always assume mine are great until I hear otherwise so I do not have any anxiety in waiting.  I want my results and options at the same time.  That being said, I get scanned and results in the same day so waiting is not an issue. Sometimes due to my work schedule, I have not been able to get scanned and results appointment in the same day and I just wait for my appointment. 

Fight for my love
Posts: 1530
Joined: Jun 2009

All I can say is I hate waiting, the anxiety is just so bad on me. I can't remember how many times I was so stressed out by waiting.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

We get all lab and scan results directly, first, much preferred.   "Face-to-face", is often Skype or G-voice.   She/we actually trudge down to some of the drs' offices about once a year.

Steve444
Posts: 105
Joined: Sep 2014

I don't like waiting either, but can understand why the onc would like to discuss the results before having you worry alone.

when I get a scan I always ask and wait for the CD before I take off.  I look at the images when I get home and then refresh the patient portal until the report from the radiologist shows up.  I also like to process the results before discussing with my oncologist the following week.  I should relax and not worry, but here I am a week out from my next PET scan wondering how it will go. 

I was also the kid who would slice the tape on the presents under the tree, so I obviously have issues...  :)

zx10guy
Posts: 266
Joined: Dec 2013

I'm with you.  I want to know as soon as possible.  The longest wait I've had for results was the next day.  I don't and won't wait till my follow up visit with my oncologist to get the radiologist report.  I think more people should explore just going back to what ever facility your scans were done to get the report yourself.  I've done this since starting this whole nightmare journey and have never been told no.  Back in December, I had my 2 year scans.  I actually was able to get the radiologist report that same day.  The staff knew of the anxiety we were going through as the 2 year mark was a milestone on the way to the 5 year finish line.  The staff was very understanding of the multiple phone calls we placed asking if the report was done yet.  I also didn't wait for my onocologist to call me with the CEA/blood work.  I went into the clinic and asked for the results of the blood tests.

The only time I waited for my oncologist to give me my scan results was the one year follow up when the follow up appointment was scheduled the day after my scan.

I really think all the stress/anxiety of waiting for scan results is unnecessary when there might be an option to go get the report yourself shortly after the scans were done.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

doctors cannot bill you for email or phone consults so they have you come in for the office call....very lucrative indeed.

and no.... Doctors are not concerned with our anxieties and don't care how long we wait.

they sure have not cared about me.....bedridden 24 hours a day for over 1 1/2 years.....and literally begging for help this whole time...

even this upcoming sppt to discuss pain pump operation has taken a month to set up....and they did mark it "urgent"....best they would do.

medical system is really compromised these days and moves at the speed of molasses...

however for scans they can electronically release the results so I could read them prior to the test result consult meeting.

safe to say the medical establishment is not "on-demand".

Wish it were...

-Craig

jen2012
Posts: 1607
Joined: Aug 2012

I'm so sorry Craig, it makes me sick and angry that you have and continue to suffer so much.  My mom suffered too much before she died.  It was horrific. I can't seem to lose the anger and guilt I have.  

I've been asked to do a focus group on hospitals and healthcare. I jumped on the chance!  I've spent 2 hours the last 2 days answering questions and I have the group next week to discuss in more detail.  It has been therapeutic to discuss the good, bad and ugly in healthcare.   I have realized in comparing where my mom was to where my husband has treatment...that I really like where my husband is, just not his doctor.  

It is horrible that they are making you wait for a month for you appt.  That is just wrong. Can you involved a social worker or an advocate to help get things done faster?

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

the month wait is about up now - finally.  

The appt is now just 2 days away on Friday....thank goodness.

Now let's hope i don't have to wait that long for surgery:)

that will make colonoscopy, endoscopy and pain pump surgery - and all in a few months.

What a beating it has been.

Doctors and nurses in various depts know how I've hurt but just go home every night and live their lives like nothing is wrong.

They don't seem to realize how hard it is to pass 24 hours a day in agonizing pain - day after day - month after month - year after year.

Wish they could walk a mile in our shoes.

- Craig

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Just hate getting the results no matter what.  We have a "My Chart" which all results are posted once they are read or run and I've never signed up for it.  I'd like to know right away, but afraid to for some reason so therefore wait for the doctor's appointment.  Sometimes them "making" you wait for an appointment face to face makes me think they just want the extra office fee for seeing you, especially when you can get it on line if possible.  I'm torn both ways.

Kim

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

things with my doctor. I schedule the visit the day after my scan. I don't stress that 24 hours waiting period, why should I? That's not going to change anything. I also found out I'm ok with dying, I'm not super brave or anything, I'm just ok with it. My life's been awesome and I'm grateful for the run I've had. I had 'scanxiety' the first couple of times but not anymore, it's pretty hard to stress me out with scan results. Does that sound weird? If I go in 1 year or 40 years I just don't want it to hurt or be miserable, I guess I'm afraid of that but that doesn't scare me that much.

Easyflip/Richard

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Most test results even if they are "OK" or clean require some type of follow up, either a f/u visit or a f/u scan at a determined

time interval. Sometimes test results are "gray". They require a f/u scan or a more involved test. That is something that should be

discussed in person. If a test is positive and a biopsy or treatment is required then that shoulkd be in person and in a timely fashion.

This can be extrapolated to other fields as well. Does you doctor charge for this visit? You bet. Does the doctor go through angst at

having to deliver bad news and prepare for the barrage of questions that we have. Hopefully yes.

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Trubrit
Posts: 5193
Joined: Jan 2013

I like your avatar. Is is a Red-tail Hawk? 

 

 

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

exactly so. 

jen2012
Posts: 1607
Joined: Aug 2012

Thanks everyone for sharing your preferences.  Safe to say that the majority of stage 4 folks do stress and do want to know sooner rather than later.  Doctors should be more compassionate and understanding of this.  As I mentioned above, since my husbands doctor only has office hours one or two days a week, it means always a wait.  Especially for pet scans that are only done on Fridays.  Plus it seems like she is always either on vacation, at a conference or it's her week on the inpatient floor.  Frustrating.

We did see his surgeon this morning, about scheduling a colonoscopy.  It will be next Monday.   I very casually mentioned that we hadn't received results of his CT scan yet, and did he happen to look at it. He said he had only looked at the Jan pet, but he'd go take a look.  So good news is from the chest, abdomen, neck scan it looks like organs are clear, but it seems to be back in the bones.  We will have to wait til tomorrow to see what she says further, but it was nice to just hear that much for now.  Kind of what we were expecting...  And being a straight shooting surgeon...no drama, no fake concerned look, just the facts.

LindaK.
Posts: 496
Joined: Apr 2013

My husband's first oncologist used to make him wait 2 weeks for a follow up after the ct scans.  His staff was so incompetent it sometimes took 3 weeks to get an appt. for a scan and then 2 more weeks for the "news".  One time my husband said "Why do I have to wait 2 weeks?" to the girl making the appointments.  She replied "Oh, I know how you people get"  I had to walk away.  She works in an oncology office and had NO empathy for the patients.  The last appointment we had with him was last March when the doctor yelled into the exam room with a phone in his ear (we had already been waiting an hour) "Looks like 2 lymph nodes are now involved"  We changed doctors the next day.  They scheduled a PET scan at that first appointment and had the office follow up 2 days later.  I preferred face to face for the PET scan since he'd never had one and they showed us the actual scan and explained everything.  Former onc. never showed us scans, just the reports from radiologist.  We had a lot of questions and the onc and his "fellow" doctor were very patient and thorough.

When you're having a problem, you want the results ASAP.  When you're hoping for NED, it doesn't seem so bad.  Sadly, my husband only had 1 scan to show NED and the former onc sent in a resident we never met to tell us.  I hate that forner onc.  I feel like he failed my husband and never called us directly until he found out we changed doctors.  When I told him we decided to go with the bigger place, he actually said "I have a big enough ego to know I'm a good doctor"  I should have said "Well, that appears to be one of your biggest problems" I keep wondering if things may have turned out differently if we went to the bigger cancer center and hospital at the start. Sigh...

I think the doctors should do whatever the patients prefer.  They should set up a time for a call from them or a staff member to give the answers you are looking for.  A follow up in the office is sometimes necessary too. 

Linda

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I used to wait the 2 to 3 weeks to get the scan reports, then I found out that you could go to the radiologists office and get your disc with scan and his written report all on there.  I like doing this because I can have my questions answered by the oncologist because of reading the report I knew what I wanted to know more about (does that make sense?) 

Before, I would be anxious because something new always seemed to show up, and I could look up things (words that are medical technical) up and know more about it.  I didn't like being anxious.  The scan report in my hands always made me feel a little more control of what was happening, and next steps. I never got anxious about the scan itself, just the results.

Hope all is good.

Winter Marie

zx10guy
Posts: 266
Joined: Dec 2013

I want to clarify a misconception some are having about getting your scan results early.  I have not nor have I implied not having a follow up with your oncologist to discuss the results.  I prefer to have the results early in case there is something that pops up.  I know I would be able to have time to calm down from any bad news and be able to forumlate coherent questions to ask my oncologist.  I don't know how many people would be able to keep a calm head when unexpected or even expected bad news is received and be able to carry on a cogent conversation with their doctor.  Just think back to when many of you all first received the news of your cancer diagnosis.  How many of you all were in a state of shock?

jen2012
Posts: 1607
Joined: Aug 2012

Absolutely, it's so difficult to know what to ask when something is thrown at you.  

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I prefer instant results.  My doctor had a no over the phone policy but I told her that I can't deal with that and to get over it, I want the results as soon as they hit.  Of course, the one time she didn't call me, I was in a panic.  Turned out she just had a very busy day.  I think the problem becomes cell phones.  She never calls me on my cell, only at home or work (I gave her permission).  You don't want to call and say "so I have bad news" when someone is in their child's school, driving, at a job interview or the supermarket.  Now that I am two years out, I have much more confidence that my scans with be NED.  I didn't even worry a little at my last colonoscopy.  The scans are a bit scarier.

NewHere's picture
NewHere
Posts: 1200
Joined: Feb 2015

Had PET scan today.  Would have liked something right then and there.  I can get the whole thing later, but tell me is something looks like it is a problem or nothing like that showed.  Waiting game now.  Do not want to wait until next week.

Steve444
Posts: 105
Joined: Sep 2014

I'm in the same boat...  Today I had my first pet scan since July.  I asked for the disc so I could look at it myself when I got home, but they said they don't burn them on the spot anymore in the mobile scanning station on site due to outdated software.  Ah well, waiting it is...

NewHere's picture
NewHere
Posts: 1200
Joined: Feb 2015

Yup.  I am prepared for whatever at this point.  It is what it is.  But being in this, knowing there is something or not is fine.  And if it is overestimated as being worse then I get good news later, that is fine.  Not that I can read it, but tell me if something off.  Good luck with your scan today.  Just part of the things we face, hopefully we both get some good news shortly.

jen2012
Posts: 1607
Joined: Aug 2012

Yes good luck to both of you!

my husband was supposed to have his pet scan tomorrow, but he was admitted last night and now they won't do the pet until he's been out of the hospital 3 days.  Ugh, the waiting never ends.

interestingly the hospital just started a new service and we get the email last night. They set up a patient portal for patients to view their scans, reports, etc.  Now Im not sure that will be more info than we want...I'm kind of nervous about it.

NewHere's picture
NewHere
Posts: 1200
Joined: Feb 2015

I have the patient portal also.  It is good to see the items, though for some reason only outpatient, not inpatient.  Unfortunately there is a delay before some things get posted.

 

Right now I am going crazy, the report from my PET scan is complete but my Dr. is not in and the report not posted.  So they will not tell me until next week.  I already know I have Stage III C cancer and if it is somewhere else I get bumped to IV, though the initial treatment is going to be the same.  (We had gone through this already on meeting.)  All I want is a simple answer.  Is it someplace else or not?  I can get the details next week.  Grrrrrrrrrrrrrrrrrrrrrrrr.  For me the stress of waiting for 3 more days is a lot more upsetting and unsettling than being told it is somewhere else, even without details or prognosis.  I get it.  I have cancer.  I am going on chemo.  I may need more surgery.  I doubt anything they say at this point is going to really be that bad, for the most part Laughing

Steve444
Posts: 105
Joined: Sep 2014

I checked online, no results so I called the radiology office and was told the report had been sent to my doctor but could come pick it up if I'd like.  Before walking out the door I checked again and the report was posted.  Anyway, I'm no longer NED.  There are 5 active areas in the liver again, but sizes are under 20mm each.  I've enjoyed my chemo break and at least have some time to chew on things over the weekend before I visit the cancer center next week.

NewHere's picture
NewHere
Posts: 1200
Joined: Feb 2015

Sorry to hear that.  Hope the next round goes smoothly for you and they get gone from the chemo.

My chest x-rays only had one non-cancer thing since 2008.  Recent round indicated 3-4 things of indeterminate type.  Could be that the chest x-rays and other tests were either not sensitive enough or not done in the correct areas.  But prepared for otherwise based on the PET scan.

BillO60
Posts: 72
Joined: Mar 2015

I personally would rather have the results as quickly as possible but I can understand why some Doctors would want to do a face-to-face. Seeing the results in an email might come off a bit impersonal for some people. Plus, you can't quiz the email and I think most Doctors who are working with cancer patients want to make sure the news (good or not so good) is understood by the patient and might want to give the patient a chance to ask questions. 

In my case, I had a colonoscopy on February 26 where they discovered a mass which they biopsied. My primary doctor pushed through getting me on the schedule for a CT scan the next week and he asked me to come by his office after the scan was complete. My 1st question was about the biopsy and he gave me the news. He asked if I received anything in the mail regarding the biopsy results and at that point I hadn't which he said he was glad because he didn't think receiving the results in the mail was the best way to break the news that someone had cancer.  Of course, when I got home that afternoon and checked my mail sure enough there was a one page letter telling me that I had adenocarcinoma high-grade, etc.

I'm being seen at the VA Medical Center and sending letters regarding the results of certain types of tests seems to be routine and I don't think the doctors have any control over that practice. For me I was okay with that because I understand the terminology and know it's not the end of the world.  But I can only imagine the panic someone might feel that doesn't understand and opens up that type of a letter at the end of the day when no one is around for them to talk to.

Personally, I think Doctor's should be conservative in how they communicate life alterning news to patients but then they should tailor how they communicate news based on feedback from the patient.  Like someone else said, some Doctor's can come off as being "paternalistic" so the patient might have to nudge them a bit (I do believe in arguing with the Doctor if I think it's for a good reason).

I do like the idea of the portals although the one the V.A. has doesn't appear to display lab or scan results. I've used it to reorder meds or to do "secure" emails to the Doctor.  I'll have to ask about their ability to post results in my next appointment.  I've got a PET scan tomorrow and according to the instruction sheet I received the results are supposed to be available within 24 hours.  When I had the endoscopy/colonoscopy they gave me a 4 page document (with pictures that are not suitable for framing) and a summary of the results and their recommendations within 30 minutes after the procedure. I got the results of the CT scan 2 days after the scan when I went for a surgical consult. I had a lower endoscopic ultrasound on Tuesday and got a call from one of the folks in the surgical group within an hour after the procedure was complete.  Unfortunately, I don't remember much of the conversation other than I think she said it showed some lymph node involvement so it was probably Stage 3 but since they sedated me for the procedure and I was running on 4 hours sleep I don't recall many details about the conversation.  I figured I'd wait for the PET scan results and my ONC consult next week for the final decision about the treatment plan.

So far I've been pleasantly surprised about how quick they've been in scheduling me for consults, procedures, and scans. There's been a few minor bureaucratic bumps here and there but nothing that didn't get resolved quickly. I'm not the most positive person in the world but I'm going to be an optimist and hope the forward motion continues.

 

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