Do you prefer results face to face?

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member

    Patient choice

    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

    Yes, we are discussing with

    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.

  • jen2012
    jen2012 Member Posts: 1,607 Member

    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

    Good results Sandy?!  I hope

    Good results Sandy?!  I hope so!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Sundanceh said:

    Face to face vs email or phone

    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

    I'm so sorry Craig, it makes

    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?

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Thanks everyone for sharing

    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.
    LindaK. Member Posts: 506 Member
    jen2012 said:

    Thanks everyone for sharing

    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.

    Waiting stinks

    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
    herdizziness Member Posts: 3,624
    Go to radiologist

    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

  • Trubrit
    Trubrit Member Posts: 5,662 Member
    GSP2 said:

    Depends

    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.

    Welcome to the forum, GSP2

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

     

     

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    jen2012 said:

    I'm so sorry Craig, it makes

    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?

    Hey Jen

    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

  • zx10guy
    zx10guy Member Posts: 273
    I want to clarify a

    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
    jen2012 Member Posts: 1,607 Member
    zx10guy said:

    I want to clarify a

    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?

    Absolutely, it's so difficult

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

  • GSP2
    GSP2 Member Posts: 103 Member
    Trubrit said:

    Welcome to the forum, GSP2

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

     

     

    Thanks tru

    exactly so. 

  • Helen321
    Helen321 Member Posts: 1,440 Member
    I prefer instant results.  My

    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
    NewHere Member Posts: 1,394 Member
    Waiting Now

    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
    Steve444 Member Posts: 105
    NewHere said:

    Waiting Now

    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.

    Same here

    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
    NewHere Member Posts: 1,394 Member
    Steve444 said:

    Same here

    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...

    So It Goes

    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
    jen2012 Member Posts: 1,607 Member
    NewHere said:

    So It Goes

    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.

    Yes good luck to both of

    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.

  • BillO60
    BillO60 Member Posts: 72
    Not the most Patient person in the world

    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.

     

  • NewHere
    NewHere Member Posts: 1,394 Member
    jen2012 said:

    Yes good luck to both of

    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.

    Portal Is Good

    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
    Steve444 Member Posts: 105
    NewHere said:

    Portal Is Good

    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

    My results are in - no longer NED

    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
    NewHere Member Posts: 1,394 Member
    Steve444 said:

    My results are in - no longer NED

    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.

    Ah Man

    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.