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Yesterday, I called my local medical oncologist to cancel an appointment we had set up when we thought I was going to do immunotherapy (I have decided on watch and wait instead with my Moffitt oncologist’s blessing). I was surprised to hear that they had already cancelled that appointment and set up another one a week later (end of January). I asked why I needed to come in when I was not currently in treatment, had good scans just two weeks ago, am feeling fine with no symptoms from either the cancer or the chemoradiation, they just said that the doctor wanted to see me for my two month “follow-up.”
But here’s the thing. It’s not like I don’t have two other oncologists who are also following up with me. This has been my follow-up medical schedule since the end of chemoradiation:
Already done:
* November 15th — end of treatment
* December 4th 2019 Visit with local medical oncologist — discussion of immunotherapy
* December 20th 2019 Follow-up with my radiation oncologist at Moffitt.
* December 27th 2019 CT-scan. Follow-up and discussion of immunotherapy. We decide not to start immunotherapy at this time and to watch and wait instead.
Future:
* January 28th 2020 Follow-up with my local oncologist. This is the visit I think is overkill and want to cancel. I am feeling fine and there will be no more information about how my cancer is doing (no new scan or test), so what is the point?
* February 23rd 2020 Follow-up with the Moffitt radiation oncologist & laryngoscopy.
* May 15th 2020 CT-scan and follow-up with the Moffitt radiation oncologist.
So, what is the best way of cancelling the visit while maintaining a good relationship with the third oncologist? I don’t want to just make up excuses and keep canceling and rescheduling the appointment.
If it was me I'd just call the office that scheduled that followup and clarify what the specific purpose was for that particular appointment. Remind them you're not doing the immunotherapy. How many patients does that practice have? The current situation for every single one of their patients probably shifts constantly. Which is why more eyes working in partnership keeps everyone current. Many times "followup" appointment schedules are auto-generated by calendar software. It is probably just out of sinc with your updated treatment plan. All this would take is a simple phone call so I don't see the problem. I'm sure they don't want to waste their provider, support staff, or facility time either.
Last edited by Parnassia; 01-14-2020 at 03:07 PM..
If it was me I'd just call the office that scheduled that followup and clarify what the specific purpose was for that particular appointment. Remind them you're not doing the immunotherapy. How many patients does that practice have? The current situation for every single one of their patients probably shifts constantly. Many times "followup" appointment schedules are auto-generated by calendar software. It is probably just out of sinc with your updated treatment plan. All this would take is a phone call so I don't see the problem. I'm sure they don't want to waste their provider, support staff, or facility time either.
I had a conversation with them yesterday. They are aware that I am not doing immunotherapy. They said that my Moffitt oncologist said that I should have a two-month follow-up visit with them. I told them everything that I said here in this email and they just kept repeating that the doctor (local oncologist) wants to see me.
It is not just the time this will take. It is also that I am afraid I will get yet another hard sell on immediate immunotherapy with scare tactics. (This is what happened last time I spoke with him.) I have already made up my mind and don’t want the extra stress. I can totally see the local oncologist reading a bunch of needlessly negative stuff into my recent scans (the tumors didn’t shrink that much, they could recur any time, you are taking a real risk, etc. etc.). I just don’t want to deal with it.
I had a conversation with them yesterday. They are aware that I am not doing immunotherapy. They said that my Moffitt oncologist said that I should have a two-month follow-up visit with them. I told them everything that I said here in this email and they just kept repeating that the doctor (local oncologist) wants to see me.
It is not just the time this will take. It is also that I am afraid I will get yet another hard sell on immediate immunotherapy with scare tactics. (This is what happened last time I spoke with him.) I have already made up my mind and don’t want the extra stress. I can totally see the local oncologist reading a bunch of needlessly negative stuff into my recent scans (the tumors didn’t shrink that much, they could recur any time, you are taking a real risk, etc. etc.). I just don’t want to deal with it.
If that's the case no one else can help you. If you don't trust your oncologist team (including the Moffitt one who recommended this followup), have all these suspicions, you are the only one who can resolve that. All this over some minor practice protocol? You also need to be clear with yourself about why you don't want to follow up. You are afraid to hear bad news, to be disappointed, so you choose to assume they have ulterior motives. If you've made up your mind and don't want to hear anything contrary to your beliefs, walk away from these people and accept the outcome.
I know this sounds harsh, but at some point you have to revisit what you want and what you are willing to give to get it. You say you want this cancer resolved (who wouldn't?) but don't trust anyone to actually attempt it. Every step seems constantly adversarial. Balk and dissemble, balk and dissemble, over and over again. This isn't supposed to be a war of wills. Its supposed to be a collaboration. Even if it means listening to stuff that's uncomfortable. Giving up an inch to trust. Coming to peace with the fact that some subject matter expert might actually know something you don't. There's a difference between being a reasonable advocate and being obstructionist. At some point most people stop trying to drag an unwilling horse to water.
I do wish you well, I really do. I also think you are torturing yourself needlessly by hyperfocusing on the little stuff. I get it...when we don't feel in control about large things we narrow our focus down to the little stuff we think we can influence. It won't solve the bigger problem however.
Last edited by Parnassia; 01-14-2020 at 05:15 PM..
If that's the case no one else can help you. If you don't trust your oncologist team (including the Moffitt one who recommended this followup), have all these suspicions, you are the only one who can resolve that. All this over some minor practice protocol? You also need to be clear with yourself about why you don't want to follow up. You are afraid to hear bad news, to be disappointed, so you choose to assume they have ulterior motives. If you've made up your mind and don't want to hear anything contrary to your beliefs, walk away from these people and accept the outcome.
I know this sounds harsh, but at some point you have to revisit what you want and what you are willing to give to get it. You say you want this cancer resolved (who wouldn't?) but don't trust anyone to actually attempt it. Every step seems constantly adversarial. Balk and dissemble, balk and dissemble, over and over again. This isn't supposed to be a war of wills. Its supposed to be a collaboration. Even if it means listening to stuff that's uncomfortable. Giving up an inch to trust. Coming to peace with the fact that some subject matter expert might actually know something you don't. There's a difference between being a reasonable advocate and being obstructionist. At some point most people stop trying to drag an unwilling horse to water.
I do wish you well, I really do. I also think you are torturing yourself needlessly by hyperfocusing on the little stuff. I get it...when we don't feel in control about large things we narrow our focus down to the little stuff we think we can influence. It won't solve the bigger problem however.
What?
“Balk and dissemble?”If there is one thing I don’t do, it is dissemble. Also balking? Hey, I went through chemoradiation. No balking there. And no balking with the immunotherapy either. I am not doing it, not because I am afraid, but because an expert on oncologist recommended that I do not go that route due to my history of autoimmune disease. His exact words: “Sometimes the most difficult and courageous choice is to do nothing!”
So, the expert oncologist at Moffitt said I shouldn’t do immunotherapy. I agree with him. I am not evading anything. The expert oncologist at Moffitt transferred my info to my local oncologist and supposedly said to follow-up. My understanding I that this is 100% pro forma. They are not a team. I don’t believe they have ever met each other. I just need someone local to administer the immunotherapy locally if I should need it later on. That is why I am maintaining a relationship with the local oncologist. I don’t think he is horrible. I just think he is persistent. And I don’t want to hear it again right now.
Maybe he won’t nag me about it and use scare tactics. Maybe it will be something like: “How are you feeling? Fine? Great! It looks like you are doing well and your radiation burn is healing! Scans look good too! See you in a couple of months!” after a one+ hour wait. Long story short, I am having a hard time imagining how this visit could possibly be useful. I am not saying that this local oncologist could never be helpful. I am saying I have no clue how he could be helpful at this time.
I suppose I could just cancel the appointment and if they don’t want me as a patient anymore, I could find another local oncologist.
Last edited by Jill_Schramm; 01-14-2020 at 05:56 PM..
“Balk and dissemble?”If there is one thing I don’t do, it is dissemble. Also balking? Hey, I went through chemoradiation. No balking there. And no balking with the immunotherapy either. I am not doing it, not because I am afraid, but because an expert on oncologist recommended that I do not go that route due to my history of autoimmune disease. His exact words: “Sometimes the most difficult and courageous choice is to do nothing!”
So, the expert oncologist at Moffitt said I shouldn’t do immunotherapy. I agree with him. I am not evading anything. The expert oncologist at Moffitt transferred my info to my local oncologist and supposedly said to follow-up. My understanding I that this is 100% pro forma. They are not a team. I don’t believe they have ever met each other. I just need someone local to administer the immunotherapy locally if I should need it later on. That is why I am maintaining a relationship with the local oncologist. I don’t think he is horrible. I just think he is persistent. And I don’t want to hear it again right now.
Maybe he won’t nag me about it and use scare tactics. Maybe it will be something like: “How are you feeling? Fine? Great! It looks like you are doing well and your radiation burn is healing! Scans look good too! See you in a couple of months!” after a one+ hour wait. Long story short, I am having a hard time imagining how this visit could possibly be useful. I am not saying that this local oncologist could never be helpful. I am saying I have no clue how he could be helpful at this time.
I suppose I could just cancel the appointment and if they don’t want me as a patient anymore, I could find another local oncologist.
Cancel. Why not? This isn't a trusting relationship. There is such a thing as good will. It's not there. You don't want to hear anything he might tell you. You're expecting nagging and manipulation. You seem to feel you already know everything of value. You don't want to waste your precious time. Why should they waste their effort?
FWIW, if I need to find an oncologist, persistence is probably something I'd want.
Last edited by Parnassia; 01-14-2020 at 09:27 PM..
Cancel. Why not? This isn't a trusting relationship. There is such a thing as good will. It's not there. You don't want to hear anything he might tell you. You're expecting nagging and manipulation. You seem to feel you already know everything of value. You don't want to waste your precious time. Why should they waste their effort?
FWIW, if I need to find an oncologist, persistence is probably something I'd want.
You know, the world is more complicated than: Trust/Not trust. I trust this local oncologist and his team enough to administer immunotherapy if and when I should need it. I do not trust them to not schedule puff appointments for me.
Besides, I recently had the following experience: I have very mild chronic pancreatitis. There is absolutely nothing medical professionals can do for this disease. There is no monitoring and there is no treatment. It is all life style modification. Fortunately, I have modified my lifestyle so that it is no longer much of an issue for me. And yet, I kept getting follow-up reminders from my GI. Basically, “Doctor X would like to see you.” Finally, a while later, I saw this doctor in a social setting (he was my doctor first, then we became kind of acquaintance/friend through mutual friends which is weird. Nothing like being at a party with someone who has looked up your ass with a camera) and I told him I hope it’s OK I’m not seeing you, because I feel fine and I’ve got this under control. And he said: “Of course! Why are you asking?” And I told him about the letters I was getting. And he said: “Oh, don’t worry, those are just generated automatically. You’re good. Sorry about the harassment! Ha ha ha!”
So, since again I am feeling well and the scans are good and I not in treatment and I can’t see how ai will be getting anymore information, I was wondering if I were in some sort of similar situation, or whether it is different, because it is cancer and cancer should always be treated with utmost seriousness (and oncologists trusted) no matter what.
Also, you say: I don’t want to hear anything the other oncologist has to tell me. Untrue. I specifically sought him out for a second opinion twice. Once in September before I started chemoradiation and once in December after I ended it. We had very long, thorough conversations. We probably talked for a total of 45 minutes each time. I learned interesting and important things from him. He is very smart. He is also extremely pro-treatment no matter what. He heartily endorsed this treatment for me even before he knew I had autoimmune disease. And when I brought it up, he waved away the concerns.
I also had two long consultations with the Moffitt oncologist. He struck me as extremely smart and much more judicious. He asked me about my autoimmune disease from the get-go. He thoroughly discussed the potential benefits and harms of each course of action and finally came to the decision I discussed above (immunotherapy later potentially, but not now).
So, getting back to what you were saying. It’s not like I am putting my fingers in my ears and not listening to him. I did. In fact, I was completely in his camp at the end of chemoradiation and was feeling frustrated with my Moffitt oncologist. But listening to the Moffitt oncologist and doing a lot of my own research finally convinced me that watching and waiting was the better approach.
I have already listened to him. We have no new information except the scan which show that one tumor is gone and the remaining two are 75% smaller by volume. I already know that this scan is both promising and inconclusive. It is possible that the tumors may continue to shrink or that the cancer cells are already dead. We will not know that until I have a PET scan in the summer at the earliest.
I don’t want to go to this pro-immediate treatment oncologist (whom I used to agree with) and hear him say: “Well, I had a patient whose tumors shrunk more than that and they grew back! You never know.” Because I already know that. I already know it’s quite possible they will grow back, but still the other oncologist and I made our decision and he had his say twice already.
So, long story short. I think the local oncologist is smart, professional, a good communicator and very energetic. We happen to strongly disagree on my treatment decision at this particular juncture. Maybe we will agree again in the future. I want to maintain the relationship but I really do not want to see him in two weeks.
Last edited by Jill_Schramm; 01-15-2020 at 04:47 AM..
Reason: More stuff ...
Wow....Talk about self absorbed and high maintenance. I think you would be doing the doctor a favor by cancelling.
OK, so I should unquestioningly go to every appointment that is made for me and to question that is “high maintenance?” Did you even read the posts?
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If that's the case no one else can help you. If you don't trust your oncologist team (including the Moffitt one who recommended this followup), have all these suspicions, you are the only one who can resolve that. All this over some minor practice protocol? You also need to be clear with yourself about why you don't want to follow up. You are afraid to hear bad news, to be disappointed, so you choose to assume they have ulterior motives. If you've made up your mind and don't want to hear anything contrary to your beliefs, walk away from these people and accept the outcome. 
and cancer should always be treated with utmost seriousness (and oncologists trusted) no matter what.
