Do you prefer results face to face?

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.

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

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.

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

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?

Trubrit said:

Welcome to the forum, GSP2

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

 

 

exactly so. 

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 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...

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.

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 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 

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.