Has your doctor, ENT, Oncologist, radiology oncologist ever called you out of the blue and asked if

GregP_WN

Today, my clinical trial doctor, (I have one for the trial, oncologist, ENT surgical oncologist, now) called today to ask if I could "come on down to the clinic". Like it was around the block. He apparently doesn't know that I am 3 hours away. I will have to have a talk with him about that. Anyway, my office mgr. asked what they wanted to see me for, the nurse didn't know. I told her to tell him that if I really need to come in I could come in tomorrow. The nurse came back on the line and said that no, that's OK, just come on in next week as normal.

So, I assume, since I'm their star patient for this trial he just wanted to pat me on the head and look at my tumor to be sure everything was OK. But it's a little unnerving to have them call out of the blue and want me to come in. I'm sure that if it was serious that they would have said 'get your butt in here".

Teachertina

Before I would have to drive 3 hours to get there I would want to ask the doctor a few questions like why? Is there a problem? They could at least tell you Something! Leaving you hanging with worry isn’t helpful! Geez!

GregP_WN

Yep, my thoughts. Not too worried though. I'm pretty sure they just want to poke me with something sharp and see if I scream. Or if anything pops out of my neck. I know what a lab rat feels like now.

Bug

I think you're probably right, Greg - if there was something dire they would have said to get in there. Looking forward to hearing about it. How are you doing today/tonight?

JaneA

That would be unnerving, but I'm sure that he doesn't realize how far away you live. Yet, it comforting that you are "top of mind" with him - that he knows you and cares about you.

legaljen1969

That is a little strange. Yes, I suppose you are going to need to have a chat with him about the fact you can't just pop in at random times.

I had the opposite problem yesterday. It takes me about 1.5 hours to get to my doctor. I was to finally have my first follow up with the oncologist since my surgery in February. We have had one phone visit when he gave me my Oncotype DX score and said he would be calling in the prescription for to me to start my medicine. This was to the first face to face.

Anyhow, I left and I was about 20 minutes from his office when the receptionist called and told me they had decided to change it to a telehealth appointment. I told her I was almost there and it would be much easier for me just to come on in because my video on my phone wasn't working quite right. She said the doctor had changed it to telehealth and unless I could do that, I would have to reschedule but it would be at least another month before she could get me in. I made a call, scrambled to get to a computer and made it.

Appointment starts and doctor says he was very specific that this was to be an in person appointment and NOT to schedule me for telehealth since he hadn't seen me in several months. He started to chastise ME and I told him nope, I went to a lot of trouble to make this happen since his scheduler called me 30 minutes before the appointment and said if I didn't do telehealth I would not be able to come. He wasn't too pleased about that. He was going to add me to his appointments at the end of the day, but once he found out I see the surgeon for follow up next week and someone would be "hands on," we proceeded. I told him this was the second time his office had done this to me, let me get 15-20 minutes out and try to reschedule. The last time, I got all the way there and was walking into the building when she called. Apparently he was working from another site that day and his scheduler forgot to call me until just before. It's definitely a work in progress, but I think someone's late afternoon was not that great (especially since the only place I knew I could get in quick to use a computer and do a telehealth appointment was an attorney friend of mine, who was in the room and listening in.)

Anyhow, so sorry someone else has to deal with the whole "oh, just pop on in."

GregP_WN

Bug, doing fine. I still have my drainage, swollen lip, numb lip in the morning issue, but that's nothing compared to some of the side effects we all have. The pain issue is still with me but oddly, it seems to be changing from being worse in the mornings to being worse in the afternoons. At least it's not all day long.

HolyCross

I have had some appointments changed before at the last minute, not as close as Jen, but still. I plan to be off work on those days that I have an appointment, it is a couple of hours away. When I take a day off, I lose a day's pay, then when they cancel on the day of the appointment and want to change, it's a day off for nothing. Another thing that gets me ticked is that if you are late for an appointment or miss an appointment they have a sign on the counter that says "If you miss an appointment without adequate notice, you will be charged for the time". I asked the girl at the desk one day who I should send the bill to for my missed day of work since they didn't give me "adequate notice". She didn't have a clue what I was referring to.

legaljen1969

@HolyCross- I totally understand where you are coming from about asking where to send the bill. Then they get you back to the check in and wonder why your blood pressure is so high or you are stressed out. LOL Doctors and lawyer are the worst about cancelling last minute or thinking you can just "pop in" and then wondering why you get upset about it as a patient/client.

LiveWithCancer

@legaljen1969, I would be so angry if my doctor's office did that to me! The worst I have had happen is that they schedule me for the doctor and then push me off to the nurse practitioner. I love my NP so it is no problem at all ... though she has been known to tell me to refuse to see her because it has been too long since the actual oncologist has seen me... I had some appointment canceled or turned into video conferences, but not at the spur of the moment like what has happened to you.

@GregP_WN, I hope the doctor just wanted to take a look or something. I was in a trial for 4 years and never had that happen though I did see the researcher every time I was there (which, for me, was every 2 weeks the majority of the time). I've had them call because they forgot to get me to fill out a questionnaire ... so we just do it over the phone.

I hope you remember to post and let us know why they wanted you to pop in for a visit today after you find out why. I agree that it must not be too crucial or they would not have allowed it to wait. (I'm really sorry you're feeling like a lab rat. I absolutely loved being in the trial I was in and felt like the quality of care far exceeded what I got before or after.)

po18guy

Not exactly the same, but...after my first relapse I entered a clinical trial and that drug (Romidepsin) in the subsequent long-term study, kept me in full response for 4 1/2 years. At that point, I was at one of many follow up appointments after routine scans (about my 25th set IIRC) and the usual check for nodes ('neck massage' Dr. called it), this appointment being with the nurse practitioner. 5 years was just around the corner and we all know that the magic five mark means you're cured. Before we left, I casually asked how my scans were. The NP said, "let's have a look." She accessed the report and began reading, then suddenly stopped. "I'd better go get doctor" Crap! Here we go again.

GregP_WN

I found out what the issue was. The doctor that gives the clinical injection is not the Dr. that is lead over the trial, he is an ENT Surgeon/researcher, so it's his job to do the jabbing. He thought I was supposed to be there every Tuesday for an injection, but that day was my off week. He was wondering where I was. So, no problem. The Research Nurse for this sent me a message and said she has everyone on the same page now, good to know.

Bug

Good news, Greg.

LiveWithCancer

I am glad there was a simple explanation!! I am also glad they told you now instead of making you wonder for a week.