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I'm over-thinking this, right?


Jenny in Florida
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I had my first round of annual breast cancer follow-up appointments back in September/October. Nothing remarkable happened at the time, except that one scan showed one tiny issue in one lung that my medical oncologist was 99% sure meant nothing, had probably been there forever. He sent me for a CT scan, which I did and then forgot all about. Following the doctor's instructions, I scheduled a follow-up for January before leaving the office.

The week before New Year, the office left me a voicemail cancelling the appointment and telling me to call them to reschedule.

I have tried several times since then to reschedule the appointment, assuming that, since it's just a follow-up, I'll be sent to the back of the line. However, each time I get through to someone at the desk, they take my name and date of birth, look up something, then tell me I have to speak to the doctor's secretary. She is never available, so I leave my name and number. She did call me back yesterday, but I missed the call. I tried again today and had the same conversation. Over an hour ago, I was promised that she would call me "in a few minutes" as soon as she finished up with another patient. 

So, is it weird that although I normally just make an appointment by speaking with whoever answers the phone, this time they are making me wait to talk to a specific person?

That doesn't mean anything terrible, right?

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I just called again, with the excuse that I wanted to try one more time to reach her before the end of the day. This time, she was in a meeting. I asked straight up if I actually need to speak to her, since all I need to do is schedule a follow-up, and was told "it just depends." Then they took my name and number and said she'd call me back.

I know you're probably right, @ktgrok, but when it comes to dealing with either of the oncologists, especially, I start getting really nervous when anything is out of the ordinary.

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DH has been living with stage IV cancer for about 3.5 years now. That kind of thing wouldn't happen with his oncologist--we communicate through the portal or phone directly with the doctor. Sometimes with the nurse for minor things. Other than scheduling his next appointment after he sees the doc, we never deal with a non-medical staff person at the oncologist's office. I would assume if there was anything amiss it would be a nurse or the doctor trying to get in touch with you, and they wouldn't be playing the silly call back game. I wouldn't worry. Hugs.

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1 minute ago, Pawz4me said:

DH has been living with stage IV cancer for about 3.5 years now. That kind of thing wouldn't happen with his oncologist--we communicate through the portal or phone directly with the doctor. Sometimes with the nurse for minor things. Other than scheduling his next appointment after he sees the doc, we never deal with a non-medical staff person at the oncologist's office. I would assume if there was anything amiss it would be a nurse or the doctor trying to get in touch with you, and they wouldn't be playing the silly call back game. I wouldn't worry. Hugs.

I agree with this, but I'd be worried, too.  It's a natural response.  Sending hugs.

 

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3 minutes ago, Kassia said:

I agree with this, but I'd be worried, too.  It's a natural response.  Sending hugs.

 

I suppose it's a natural response for most people. When you get the stage IV diagnosis quickly learning to tamp down the worry becomes a very necessary self preservation measure. Otherwise you'd totally lose your mind.

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I wonder if it is an insurance issue or something like that. That would explain their lack of urgency and why they want you to talk to the secretary, as opposed to the doctor or a nurse. I agree that they are being rude. If it was me, I would call them back and tell them I was having anxiety over it and needed to know what was going on.

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26 minutes ago, Pawz4me said:

I suppose it's a natural response for most people. When you get the stage IV diagnosis quickly learning to tamp down the worry becomes a very necessary self preservation measure. Otherwise you'd totally lose your mind.

Good point and I'm sorry you have that experience with your DH.  My SIL had Stage IV and my emotions were all over the place depending on what was going on with her.  

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I think of myself as a pretty resilient person. My family has referred to me in the past as the Energizer Bunny, because I keep going and going . . .

But I have never fully bounced back from the emotional toll some of the stuff surrounding the breast cancer took on me. Note that it wasn't the cancer itself, but a lot of the stuff that happened as a result of it, that really smacked me down. 

Most of the time, I function, often scraping along the bottom, but still going.

Every now and then, though, something sneaks up and yells "Boo!" and knocks me down all over again. Last week, it was having x-rays of my knees that somehow reminded me of the experience of radiology and how miserable I was during that time. 

Today, it's this reminding me of playing phone tag with the doctor in order to get the results of my biopsy.

Again, I "know" it's almost certainly nothing. I "know" you're all right. 

But still . . .

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When I went for my mammogram, they discussed an option for a more expensive but more informative scan that the insurance would not pay for.  Maybe that's what's happening to you - they want to discuss options before scheduling the appointment?

I would think that if it was a matter of high risk, they would be trying harder to return your calls.

Good luck anyway.

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4 minutes ago, SKL said:

I know when they found bad stuff in my mom's colonoscopy, they didn't play around - she was in surgery days later.

I was diagnosed in July and did not have surgery until the end of September. In the intervening weeks, I spent the equivalent of days waiting on hold to schedule appointments with the surgeon and assorted specialists. It often took me multiple days to get test results. 

This feels too familiar.

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image.png.5ea1cf3f6b82688b06029efb333c57b8.png, Jenny. Call tomorrow and just straight up say, "Look, it's really worrying me that I haven't been able to resolve this appointment issue. I'm beginning to wonder if something is wrong. I'd like to just stay on hold until someone can answer this for me."

I would think they would have made sure to get hold of you if something was really wrong.

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12 minutes ago, MercyA said:

image.png.5ea1cf3f6b82688b06029efb333c57b8.png, Jenny. Call tomorrow and just straight up say, "Look, it's really worrying me that I haven't been able to resolve this appointment issue. I'm beginning to wonder if something is wrong. I'd like to just stay on hold until someone can answer this for me."

I would think they would have made sure to get hold of you if something was really wrong.

that's a great idea

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Why don't you call tomorrow, and ask to speak to your doctor's nurse.  That will give you a direct path of communication to the doctor.

My guess is that they're trying to squeeze you in just to get it done and keep you on schedule, even though they don't really have any official appointment openings soon.  They know they can't do it through the regular scheduling office because they only have a computerized schedule of actual openings and wouldn't know how or have the authority to squeeze you in.

(I'm sure it's nothing!)

 

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13 minutes ago, katilac said:

Every doctor's office should have a medical portal by this time, you shouldn't have to be going back and forth. 

Yeah, you would think that.

And, in theory, they do. However, not all portals are created equal, and not all doctors are equally good at using the tools they have.

Some are great -- allowing me to schedule appointments online, send messages and get prompt responses, do virtual visits. Some can't seem to do anything quickly or reliably. And that's true even though all of the doctors are part of the same hospital system.

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You all were right (unless they spring something on me when I go for the actual appointment). I called back again yesterday and straight up told the person who answered the phone that I was starting to get very nervous about the fact that they kept putting me off, that I had never before had a problem just making an appointment, that I wasn't worried about getting seen quickly unless there was some reason I needed to worry about that, and that if the secretary was not available, I would like to know who else I could talk to.

She put me on hold for a couple of minutes, came back to tell me that the secretary was not, in fact, available, but she would try to figure out how to help me. Turns out the doctor has no appointments available until March, which I said was fine, but then she suggested I could see one of the MAs (whom I've seen before, so I'm not sure why that was an out-of-the-box thing to consider) and got me booked for early February. She verified that I had done the scans prescribed at my last appointment and promised they would go over the results with me at the appointment.

So, yep, seems to have been mostly just a scheduling thing. But wouldn't it have been nice if someone had just explained that to me?

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21 minutes ago, Jenny in Florida said:

But wouldn't it have been nice if someone had just explained that to me?

Yes. There's simply no excuse for an oncologist's office handling such a routine thing like that. It boggles the mind that they'd be so cavalier about a patient's stress and worry level. But I'm glad that's all it was!

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I’m so glad it was nothing! I’m so glad that my oncologist lets me get all results as soon as they are available. The last time I had a PET scan, I had the report in my portal within hours of getting home. This gives me time to read it and research terms and then we I have an appointment, I’m prepared with my pages of questions. 
 

I’m in a study, and my patient liaison person said that they only send results to doctors in case the doctors don’t want the patients to have them before the doctor tells them the news. I said, “I’ll be calling to get an exemption from that rule.” This is a good reminder to make that call. 

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