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Firing oncologist?

Ruffy7
Ruffy7 Member Posts: 126
Just curious if anyone has "fired" their oncologist? My oncologist is a nice guy, I think he's really busy and I realize that my cancer is maybe even gone completely after surgery last year but I've had a couple of things that kind of make me wonder if he is really taking my case seriously. I'm on 6 mos ct scans, CEA and CA19-9 tumor marker checks. So everything fine during first appt and I felt good that here was a local doc who knows about my rare cancer - fine. But then the following happened:

1. 2nd appt. Dr comes in - still standing - didn't even say hello just said all tests came back normal and he really thinks "I'll be ok". Didn't sit down until I pulled out my list of questions for him. Then he says that even though this is a low-grade, slow growing tumor, he felt that if nothing has recurred within 5 years, it won't. This in response to my question how do you know in a few years if a slow growing tumor is gone completely. Too me, it isn't logical that a slow growing tumor wouldn't have the possibility of showing up years later...

2. About 4-6 weeks after this appt, my gyn did an ultrasound that showed a 4.3 cm mass on right ovary. Now I'm not a dr but in the past year I've done enough research to know that my cancer, if it shows up, often shows up on the ovary. Emailed my onc who responded that he didn't think it was related and the gyn was doing the right thing. That was it. Turns out he was right, but how could he know that for sure?

I get the impression from things he has said that he plans to only follow me for a few years. I emailed another onc that specializes in my rare cancer and he said that since it is so rare there are no guidelines for follow-up but he would recommend followups for 10 years.

There are so many people on this site that are dealing with so many tough, difficult things and I think sometimes that I should be ok with how things are going for me now but there's this little nagging doubt.... I wouldn't even know how to go about finding a good local onc for this cancer... guess I'm betting on that I won't need to find one. Starting to ramble :) just putting it out there to see if anyone has ideas. Would this concern you if it happened to you? Thanks, Ruffy
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Comments

  • jjaj133
    jjaj133 Member Posts: 867
    I would keep looking til i
    I would keep looking til i found someone i felt comfortable with. I fired my oncologist, simply because i could never get him to answer my questions. His PA would not let me talk to him after she told me by phone my cancer was back and here's when you go see the surgeon.
    so I think you have a valid reason. I also would be combing the cancer centers for someone familiar with your type of cancer. What is it? maybe someone here can help?
    good luck, I am sure more will jump in.
    Judy
  • dmj101
    dmj101 Member Posts: 527
    you are in a tough
    you are in a tough spot..
    medicine is a practice..
    meaning nothing is really written in stone..
    the onc telling you it wasn't related was probably based on where the node was located and what you originally had..
    But as for firing.. I just recently did that and moved to a new onc..
    Finding the right takes you doing some investigations.. what is available locally and at hospitals in your area.. then interviewing them and getting there opinions of what you had and have..
    Get copies of all your tests and pathologies and begin your search..

    \Good luck .. it isn't easy to make this move but you will find one right for you..
  • danker
    danker Member Posts: 1,276
    Oncologist
    The doctor who did my colonoscopy gave me my surgeon. I'm not sure who gave me my oncologist, but he was a big jerk. I reviewed oncologists at the univ, and went to my surgeon with three candidates. She gave a referral for a great oncologist who is now my cancer doc. So yes you can fire your doctor. You are ultimatley paying for them, so don't stay with anyone you don't have faith in. Best of luck to you in your battle.
  • steveandnat
    steveandnat Member Posts: 886
    maybe try expressing
    You might try to talk to the once so he knows how you feel. If he doesn't respond to your satisfaction then id move on. Hope it works out. Jeff
  • mukamom
    mukamom Member Posts: 402

    maybe try expressing
    You might try to talk to the once so he knows how you feel. If he doesn't respond to your satisfaction then id move on. Hope it works out. Jeff

    We didn't
    fire our oncologist, per se, just moved on because Robert had more mets show up in his liver, and they couldn't be resected or ablated. So, we got a second opinion, just to see if there weren't any different therapies that could be tried. He ended up in a trial study at UAB in Birmingham, and he has access to other treatments that his regular onc or surgeon didn't even mention.
    So, I am glad we went elsewhere,(with onc. blessing), and we are keeping our fingers crossed that this will at least keep these mets in check.

    Good luck and keep searching until you are satisfied.

    Angela
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    2nd, 3rd, no many
    2nd, 3rd, no many how many opinions it takes until you find the right doc for you. Like danker said, you're paying for them so that makes them your employee. I once had a Primary Care doc who would just breeze in and out, never let me finish answering a question and had pretty terrible bedside manner. Finally I reminded him of who was paying the bills and told him that I expect better from people who work for me. After that he did an about face and became much more responsive to my questions and concerns.
  • YoungerSis62
    YoungerSis62 Member Posts: 28
    Not all doctors are the same
    and if you are not happy with who you are trusting your very life to, move on. I am going to a different onc this week because she is also a surgeon, and my colon cancer keeps coming back, even though they remove north and south of site. I was referred by my primary. If I have surgery, it will be #3 within 18 months.

    I have an apt with old onc next week, and I am keeping it only to look her in the eye and ask her WHY she never gave me chemo or radiation therapy, telling me, "we got it all; it's over. No need to put your body through that" - Well, DUH - how about putting my body through ANOTHER 8 or 9 hour surgery????? I have adhesions from previous surgeries in the same area, and laproscopy is not an option. The cancer had come back once already - and she sat there telling me, no need for any other therapy????? I would never trust her with my life again.

    Hopefully this new onc will be someone I can connect with - will just keep looking if she isn't.
  • thxmiker
    thxmiker Member Posts: 1,278
    Second Oncolgist
    It seems time to get additional opinions. Then from there you can decide whom you want to work with. You are going to deal with your Oncologist for years on a very serious topic.

    I went to 6 Oncologists to find the one that I went with. When I had another bout with cancer I spoke to 2 additional Oncologists. The first Oncologist I spoke to was arrogant and uninformed. She also charged me the most for her consultation. I have always assumed she knew she was never seeing me again. Had I used her as an Oncologist, I would not be here today. I know the Doctor that referred her to me, and suggested that he not refer patients to her anymore.

    If the Doctor does not make sense, does not want to make sure you understand the treatment, and does try to make you feel comfortable, It is time to move on.

    Best Always, mike
  • steved
    steved Member Posts: 834
    Compatibility
    Your oncologist is an important person in your life for some time and ultimately you need to trust them with your life. You need to have some one who is compatible with yourself. You do need to keep expectations reasonable- there are patients who have unreasonable expectations of their doctors so never find some one who matches that, but I don't thin anything you are saying is unreasonable. You are right about slow growing cancers- mine came back after 7 years clear- but have you discussed this anxiety with your oncologist?

    The most common cause of problems between docs and patients is communication- mostly it is the docs not communicating but sometimes it is the patient. Be clear of your expectations with your oncologist and your anxieties. If he can't meet these, try to find some one who can.

    Steve
  • janderson1964
    janderson1964 Member Posts: 2,215
    I fired my first oncologist
    I fired my first oncologist and almost fired my current oncologist. Remember they work for you. It is your life and you are the one paying them to do thier job.
  • Ruffy7
    Ruffy7 Member Posts: 126

    I fired my first oncologist
    I fired my first oncologist and almost fired my current oncologist. Remember they work for you. It is your life and you are the one paying them to do thier job.

    Thanks for all your ideas.
    Thanks for all your ideas. I think what I'm going to do is contact a specialist on my cancer (appendix) and see if they can give me names of local oncs that will refer to them if something develops. Unfortunately none of the well regarded specialsts live close to me - closest is probably 5-6 hours away. I'd go to them in a heartbeat if something suspicious was going on but so far its just the follow ups. Not sure they will do referrals but can't hurt to ask.

    Steve, I did ask about the follow up plan with current onc esp asking about the slow growing aspect, he said if it comes back there's an 85% chance it will do it in the first 2-3 years then drops to 15% till year 5, he said there is almost no chance it will come back after 5 years. I don't know what data he is basing this on since there are few studies on this cancer.
  • abrub
    abrub Member Posts: 2,173 **
    Ruffy7 said:

    Thanks for all your ideas.
    Thanks for all your ideas. I think what I'm going to do is contact a specialist on my cancer (appendix) and see if they can give me names of local oncs that will refer to them if something develops. Unfortunately none of the well regarded specialsts live close to me - closest is probably 5-6 hours away. I'd go to them in a heartbeat if something suspicious was going on but so far its just the follow ups. Not sure they will do referrals but can't hurt to ask.

    Steve, I did ask about the follow up plan with current onc esp asking about the slow growing aspect, he said if it comes back there's an 85% chance it will do it in the first 2-3 years then drops to 15% till year 5, he said there is almost no chance it will come back after 5 years. I don't know what data he is basing this on since there are few studies on this cancer.

    Agreed, you need a specialist on board
    I have a local onc whom I like, but ultimately, my follow-up schedule is determined by my MSK specialist. At this point, at 5 years out, with no evidence of return of disease, my specialist (Dr. Paty) thinks there is a good chance I'm done with it. However, he stated that it is common for this to recur within 10 years, and he wouldn't consider releasing me before then. Initially, I was told by him that this cancer would likely return in 15 - 20 years. My feeling is that I'm on periodic scans (now MRIs) for life.

    At this point, Dr. Paty is comfortable with a 1 1/2 year interval for my scans. My local onc has decided to see me in the alternating 9 months, for bloods and a check up.

    Mine, too, was "slow-growing, low-grade mucinous adenocarcinoma" so our diagnoses are similar.

    You do need to find an onc you can work with, but ideally one who will work as an arm of the expert, and not use his colorectal experience to extrapolate to your appendix cancer.

    And yes, you hire the dr - he has to work with you.

    Good luck!
    Alice
  • lesvanb
    lesvanb Member Posts: 905
    I've had to have a team of docs
    because I live rurally and want my surgeries and second opinions at a larger cancer hospital with experienced cancer docs and surgeons (5 hrs way). I also depend on my local oncology office (2.5 hrs away and a local satellite office) and they are great.

    However I fired my first medical oncologist because he wasn't paying close enough attention during my neoadjuvant radiation/chemo and the opportunistic GI infection I got was a life threat.

    I know it's very important to me that when I go see my docs and work with them to make complex and difficult decisions, I have faith in them so I'm not on guard against them. I have that, and I worked hard to set up that kind of a team. I love my oncology nurses!

    Good luck, Leslie
  • Ruffy7
    Ruffy7 Member Posts: 126
    lesvanb said:

    I've had to have a team of docs
    because I live rurally and want my surgeries and second opinions at a larger cancer hospital with experienced cancer docs and surgeons (5 hrs way). I also depend on my local oncology office (2.5 hrs away and a local satellite office) and they are great.

    However I fired my first medical oncologist because he wasn't paying close enough attention during my neoadjuvant radiation/chemo and the opportunistic GI infection I got was a life threat.

    I know it's very important to me that when I go see my docs and work with them to make complex and difficult decisions, I have faith in them so I'm not on guard against them. I have that, and I worked hard to set up that kind of a team. I love my oncology nurses!

    Good luck, Leslie

    Hi alice was hoping you'd
    Hi alice was hoping you'd respond. Well found a local onc thru specialist referral, we'll see what happens. So the stuff I mentioned above would concern you too?

    Btw leslie love your picture! Is that your horse? I have 2 of my own - the 3 of us are all approaching retirement! :)
  • abrub
    abrub Member Posts: 2,173 **
    Ruffy7 said:

    Hi alice was hoping you'd
    Hi alice was hoping you'd respond. Well found a local onc thru specialist referral, we'll see what happens. So the stuff I mentioned above would concern you too?

    Btw leslie love your picture! Is that your horse? I have 2 of my own - the 3 of us are all approaching retirement! :)

    Yes, I'd be concerned
    someone who doesn't know our cancer has no basis for assuming when/if we are cured. I was originally told that they'd never assume I was cured - I'd be followed for life. Now it looks like they may be comfortable discharging me from care at 10 years. My local onc totally relies on MSK to determine how long I should be followed, and also the frequency of my scans. He is a brilliant oncologist, but willing to recognize his own limitations; that while he can track me and oversee my care, he just doesn't know appendix cancer (tho he's become the local "GoTo" onc for it.) He always refers his patients to MSK or one of the other specialty centers and works with them.

    Some drs have no personality/human characteristics. I'm glad that my drs are all very caring and human, all ready to sit down with me to discuss (not stand up because my case makes them uncomfortable.) Even if it is just a local onc to oversee blood works and general care, you need someone you like. And yes, you need someone who will work with you and your experts.

    So in a nutshell, yes, I'm in your corner!
    Alice
  • Ruffy7
    Ruffy7 Member Posts: 126
    abrub said:

    Yes, I'd be concerned
    someone who doesn't know our cancer has no basis for assuming when/if we are cured. I was originally told that they'd never assume I was cured - I'd be followed for life. Now it looks like they may be comfortable discharging me from care at 10 years. My local onc totally relies on MSK to determine how long I should be followed, and also the frequency of my scans. He is a brilliant oncologist, but willing to recognize his own limitations; that while he can track me and oversee my care, he just doesn't know appendix cancer (tho he's become the local "GoTo" onc for it.) He always refers his patients to MSK or one of the other specialty centers and works with them.

    Some drs have no personality/human characteristics. I'm glad that my drs are all very caring and human, all ready to sit down with me to discuss (not stand up because my case makes them uncomfortable.) Even if it is just a local onc to oversee blood works and general care, you need someone you like. And yes, you need someone who will work with you and your experts.

    So in a nutshell, yes, I'm in your corner!
    Alice

    Update
    Well I did it, fired onc and moved to a new one. Little scary at first but now feel good about it. the new onc actually sat down and spent time with me both for initial visit and follow-up. Ran more thorough blood tests, more CT scans, and wants to monitor me every 3 months for a bit. He was very honest and doesn't think it will come back but admitted that there is the chance that something is still lurking. It feels so good to not have to worry if the onc is taking it seriously or just passing time till he can cut me lose. I feel like I can trust this new onc (so far, anyway) and can let go of the worry, live my life, and let him monitor things. :) Hopefully things stay this way.

    Did make me wonder if there is a difference between a hematologist oncologist that follows you as opposed to a surgical oncologist. Wonder if the surgical onc doesn't care to do follow up if it's just a watch/wait phase, I mean their training is in doing surgery? Anyone else have this thought? Anyway all tests came back clear so good to go for next 3 months! Yeah!!
  • danker
    danker Member Posts: 1,276
    Ruffy7
    All my inital docs were given to me by UMC in Tucson. Loved my surgeon, but my oncologist was a jerk. Looked up UMC oncologists and
    picked out three that were acceptable to me. Went to my surgeon with my list and she gave me referral to my current. onc. When my wife said "you cannot fire your doc."" Ultimately I am hiring the medical team so I don't have to pay someone I don't want. Happy as a clam with my new one. Two years out from resection and NED. Think I made the right choice!!!

    PS hadn't read your second post getting a oncologist you are happy with. Good for you and best of luck!!
  • danker
    danker Member Posts: 1,276
    Ruffy7
    All my inital docs were given to me by UMC in Tucson. Loved my surgeon, but my oncologist was a jerk. Looked up UMC oncologists and
    picked out three that were acceptable to me. Went to my surgeon with my list and she gave me referral to my current. onc. When my wife said "you cannot fire your doc."" Ultimately I am hiring the medical team so I don't have to pay someone I don't want. Happy as a clam with my new one. Two years out from resection and NED. Think I made the right choice!!!

    Ps hadn't read your update Good for you, and best of luck!
  • abrub
    abrub Member Posts: 2,173 **
    Ruffy7 said:

    Update
    Well I did it, fired onc and moved to a new one. Little scary at first but now feel good about it. the new onc actually sat down and spent time with me both for initial visit and follow-up. Ran more thorough blood tests, more CT scans, and wants to monitor me every 3 months for a bit. He was very honest and doesn't think it will come back but admitted that there is the chance that something is still lurking. It feels so good to not have to worry if the onc is taking it seriously or just passing time till he can cut me lose. I feel like I can trust this new onc (so far, anyway) and can let go of the worry, live my life, and let him monitor things. :) Hopefully things stay this way.

    Did make me wonder if there is a difference between a hematologist oncologist that follows you as opposed to a surgical oncologist. Wonder if the surgical onc doesn't care to do follow up if it's just a watch/wait phase, I mean their training is in doing surgery? Anyone else have this thought? Anyway all tests came back clear so good to go for next 3 months! Yeah!!

    Generally a surgical onc follows you
    Generally a surgical onc follows you while/if surgery is still a consideration. Thus, Dr. Paty followed me, along with my medical onc, for the 3 years till my hernia surgery and completed recovery therefrom. At that point, I was "discharged" by Dr. Paty, to be followed by my medical onc (a colorectal specialist) as well as my home hematologist/general onc.

    Because my medical onc left Sloan Kettering just as he was to become my primary onc, and because I am in remission, and not in direct need of an onc's services, I asked Dr. Paty to track me. He's deciding the frequency of my scans; my local onc is determining the frequency of my bloods. They are working as a team.
  • Ruffy7
    Ruffy7 Member Posts: 126
    abrub said:

    Generally a surgical onc follows you
    Generally a surgical onc follows you while/if surgery is still a consideration. Thus, Dr. Paty followed me, along with my medical onc, for the 3 years till my hernia surgery and completed recovery therefrom. At that point, I was "discharged" by Dr. Paty, to be followed by my medical onc (a colorectal specialist) as well as my home hematologist/general onc.

    Because my medical onc left Sloan Kettering just as he was to become my primary onc, and because I am in remission, and not in direct need of an onc's services, I asked Dr. Paty to track me. He's deciding the frequency of my scans; my local onc is determining the frequency of my bloods. They are working as a team.

    Actually that makes sense -
    Actually that makes sense - maybe that's why I felt the "fired" onc wasn't taking my case seriously - no surgery to do. Oh well this hopefully will work out better. So what kind of bloodwork/scans do they do with you, alice, and how frequently?