Follow-up fatigue - Oh, please not another morning in a doctor’s office!!

[Melisande]

At the moment, I am seeing three different oncologists — one radiation oncologist at Moffitt, one medical oncologist at Moffitt and one local medical oncologist. And it seems like they all want to have follow-ups all the time. OK, I exaggerate, but still.  
 

I ended chemoradiotherapy in the middle of November.

At the beginning of December, I had a follow-up with my local oncologist to discuss possible immunotherapy (I told him I was leaning against it). 

In mid-December, I had a follow-up with my radiation oncologist at Moffitt to see how I was recovering from side effects of radiation (no problems it turns out; everything healing on schedule). She set a follow-up for mid-February to see how I was continuing to heal from the side effects of radiation. 

One week later at the end of December,  I had a CT scan and a follow-up with my medical oncologist at Moffitt (I actually flew in from another state in the middle of my Christmas vacation for this one because they refused to change the date). At this appointment, we decided against immunotherapy at this time. Instead I will be re-scanned in mid-May.

So, I thought I was “only” looking at another follow-up with the radiation oncologist in February and a follow-up with my Moffitt medical oncologist in May. But today, I get a call from my local oncologist’s office saying that they want to see me for another follow-up at the end of January since by then it will be two months since I last saw them. 

I feel like I really want to draw the line here. I really really really just want to cancel this latest follow-up. All these follow-up appointments are so time-consuming and not at all helpful for my mental health (or physical health as far as I can see.) I realize I probably will die one day of cancer, but I just want to stop thinking about it between my scans, OK? Especially  if I am feeling fine and am currently not in treatment. 
 

I just don’t get the rationale for this latest follow-up. The scans I had done two weeks ago were good. They showed the treatment is being effective; the tumors are shrinking, etc. We have decided to watch and wait for the time being instead of starting immunotherapy. We will start immunotherapy if future scans show recurrence of progression. But my next scan won’t be until May. 
 

If we are simply watching and waiting and I am feeling 100% fine (seriously, I have no symptoms from either the cancer or the treatment (whoo hoo)), for the love of God, may I please just live my life until the next scan, instead of seeing someone every three weeks, spending either an entire morning (local guy) or an entire day (Moffitt), thinking and stressing out about my cancer again, and telling them: Nope. I am feeling fine. No problems. No I haven’t changed my mind about anything. i don’t have any further questions for you. 

So, if I am not currently in therapy, if I just had a good news scan and consulted with my other medical oncologist two weeks ago, if I have no symptoms and no questions, is it OK just to tell the nurse that I feel fine and I don’t feel like coming in for a follow-up at this time? I mean, this is a morning of my life that will never come back again. 
 

[Rower Michelle]

Hi there,

I can relate to what you are saying, I have the rare ALK mutation with three doctors looking after me.  I saw the follow up appointment gerbil wheel coming and so I came up with an org chart with one doctor as the team captain.  My nurse refers to him as “The Boss”.  He worked with the other doctors to ensure I didn’t have any “puff”‘appointments.  
It seems to me the radiation oncologist has a very well defined role and you can help define the roles of the other doctors to avoid appointment overload.  I have summaries sent to the secondary MDs.   Somehow we got this system up and running well.  You can drive this bus!  I’m sure the doctors don’t really understand because they see so many patients.  As long as they know who is on first base it shouldn’t be a problem to space out secondary follow up appointments. 

The good news here is that you are doing great so that’s worth celebrating!  
Michelle

[Susan Cornett]

I understand your frustration, although I was only balancing two oncologists (medical and radiation). My medical onc is my favorite - I call him Super Doc. I liked the radiation onc but I didn't understand why I had to see them both, on the same day, to discuss the same results. Not to mention stepping on the scales twice, two sets of vitals, etc. When I was about 6 months post-SBRT, I finally told Super Doc that I needed one lead doc and I wanted it to be him. Radiation doc released me the next round and now I'm back to one. 

[Melisande]

According to what I heard on the phone, my medical oncologist at Moffitt supposedly told the local office to schedule a two-month follow-up with me. So, those two at least are coordinated — in theory. However, the appointment the local office scheduled for me is only 31 days after my appointment with the Moffitt oncologist and 55 days after my last visit with him. Both are shy of two months. And then I am also having the follow-up with my radiation oncologist mid-February so, it’s not like I’m not being followed. 
 

Another reason I don’t want to go to this appointment is that I am almost sure he is going to use scare tactics to try to make me change my mind about immunotherapy (with Imfinzi) and I have already made my decision. (No for now; yes, with Keytruda if there is a recurrence.) I just want to live my life in peace without repeated attempts to sell me on treatment I don’t want (now) and getting scared and stressed all over again about my cancer.  Actually, I would prefer not seeing this local oncologist at all but I will need him if I do eventually opt for immunotherapy. It’s not like I am going to travel to Moffitt every two weeks for the infusions.  

I don’t hate everything about him (the local guy). I think he is very smart and a good communicator. He is actually my third local oncologist — I fired the first two because they really were disasters. 
 

So, what is the best way not to refuse this follow-up visit while still maintaining my relationship with this local guy?

[Tom Galli]

Milisande,

Thankfully, we still have a lot of choices in our medical system. I’d be forthright. If you don’t want to see a doctor, then don’t see him or her. 

You are paying the bill, even with insurance. So you have a perfect right to see or not see physicians as you choose. 

I once asked my GP what his thoughts were when someone sought a second opinion. He said: “I don’t care; I get paid for the first visit.” 

Stay the course. 

Tom