Dumped by my doc...should I be hurt?

annalexandria
annalexandria Member Posts: 2,571 Member
in Colorectal Cancer #1

My oncologist emailed me recently to tell me that he thought I should go back to my GP for any further care, as it's been three years since he last saw me (my last actual tx was surgery in 2011, but it has been a long time since I did chemo).

Now, tbh, I really don't much like the guy.  I'm only here typing away through a combo of good luck, an adept surgeon, and my own unwillingness to to let this high-profile oncologist make the final call about my care (lots of arguments about things like PET scans vs CT scans...long story).

But I do feel kind of nervous about this change.  I don't really have a GP I know and trust, as my long-time doctor retired right before I got sick. So...I'm wondering how long others have been monitored by an oncologist after reaching NED (or something like NED, as I've had some abiguous scans on occasion)?

It's kind of a dysfunctional relationship, but maybe sticking with the doc I know and dislike is better than putting my care in the hands of some random GP...any thoughts?*

 

*I realize this sounds like something from the advice to the love-lorn column, but that's kind of how I feel about my doctor...I've been rejected!

Thank goodness I don't do online dating.  I'm way too sensitive.

AA

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    How dare he dump you by

    How dare he dump you by email!!!  Can you reply with a "fine, I never like you anyhow!"   :)

    Honestly, I think I'd want to keep a specialist in the loop.  Maybe fine an onc and a GP that you do like.  I don't know I just feel nervous for you.  Can your surgeon provide some recommendations for a new onc?   

  • ron50
    ron50 Member Posts: 1,723 Member
    #3
    Some of them get a bit snakey

        When you stop making contributions to the christmas fund.  Find one who talks to you ,not at you. Thhat goes for both oncs and gp's . Some one should write a book on "How to train your doctor". With your current one I would suggest a rolled up newspaper...:)   Ron.

  • bailee2012
    bailee2012 Member Posts: 60
    #4
    What a jerk

    You guys crack me up though! Seriously do enjoy reading the posts that make me laugh! Good to see that we can maintain a sense if humor while dealing with all this crap.  Too bad we can't have a big get together and hang out and laugh together. 

  • thingy45
    thingy45 Member Posts: 632 Member
    #5
    ron50 said:

    Some of them get a bit snakey

        When you stop making contributions to the christmas fund.  Find one who talks to you ,not at you. Thhat goes for both oncs and gp's . Some one should write a book on "How to train your doctor". With your current one I would suggest a rolled up newspaper...:)   Ron.

    Same here

    I did receive the same notice  last week, from my onc.  It has been 3 years and now I am on my own. Indeed it makes you very nervous, because my GP is ill himself and only works 3 days a week, question is for how long. It is very difficult to get a GP here.i live  in this town just 3 years and have gone through 4 of them. This one is actually very good.

    so now how will I get monitored, or what about ct-scan sect etc. stress is no good for us . It is a proven fact that stress can bring on cancer again which might have been dormant. 

    Back to playing Russian Roulette I guess, it took me 6 years  for a GP to acknowledge I had a problem, it took a obstruction to let them spring into action.

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #6
    "our" oncs...

    ...never lasted more than once anyway (I do spend an hour or two with them).  Time to assemble your own team and monitoring plan.  Perhaps treat it as an opportunity. The elements are what skills are needed, what personal attention you need, what the elemental services cost, and what net payments are possible, whether insurance approved or not.  

    e.g. "Our core team":  the last surgeon, an outside radiologist, an alternative/internal medicine dr and...DIY for biomarkers. Our doctors know the case personally.  My last visit for an oncologist was 3 years ago due to insurance reasons.  I'm sure your team will look different, but the idea is finding needed competences that have an interest in you.  We do, and are always prepared to, consult more drs when needed.

    I have never been impressed with standard guidelines for bloodwork - too many catchable surprises occur on the boards.  So we get more bloodwork with more markers, more frequently.  Is there a test company or insurance network with better prices?  The biggest issue is work up data that would be desirable from the earlier surgeries.  

    Sounds like your financial biggie is the insurance pre-approval and/or cost of PET/CT.  What frequency do you want and what will insurance approve?   Cash prices are all over the road map.  It is a lot out of the way, but I found a modern PET/CT site for $600 scans several years ago.    

    What are the insurance restrictions or cash costs on dr consultations at this point?  I would actually have two-three doctors ready go to, perhaps your surgeon for an annual consult, or any suspicions.  Given the number of PET/CTs you've done, I would think you might already have a personal or chosen radiologist that reads your scans.  What would be your ideal dr schedule vs "standard"?

     

     

     

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #7
    ron50 said:

    Some of them get a bit snakey

        When you stop making contributions to the christmas fund.  Find one who talks to you ,not at you. Thhat goes for both oncs and gp's . Some one should write a book on "How to train your doctor". With your current one I would suggest a rolled up newspaper...:)   Ron.

    Hahaha! I just got a mental

    Hahaha! I just got a mental image of Ann wacking her doc on the nose with the newspaper and saying, "Bad boy, bad boy!". :D. (thanks for the chuckle). :)

  • sky123
    sky123 Member Posts: 15
    #8
    Jeez...

    Hi AA, can't believe your onc broke up with you! You wrote that it has been 3 years since you've seen him; who has been doing your observational work for you? Three years seems too early to be set free, although I sure hope it is, and remains, a moot point for you!

    hugs to you!

  • marbleotis
    marbleotis Member Posts: 720 Member
    #9
    It is all about the relationship

    AA,

    You do not realize it but he may have done you a fovor - you said you did not like him anyway.  We need to have great Oncs, but also like them.  We need to have a patient-Dr realtionship.

    Challange yourself to find a new one that you are comfortable with and can see yourself with for many years to come.

    He sounds like an impersonal jerk.  I'll bet he does not even write the emails, his staff probably auto-generates based on last visit date.  Just like him go and let go of the past!

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #10
    bailee2012 said:

    What a jerk

    You guys crack me up though! Seriously do enjoy reading the posts that make me laugh! Good to see that we can maintain a sense if humor while dealing with all this crap.  Too bad we can't have a big get together and hang out and laugh together. 

    I agree Baillee..that would

    I agree Baillee..that would be awesome.  No one understands this life like the folks here do.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #11
    ron50 said:

    Some of them get a bit snakey

        When you stop making contributions to the christmas fund.  Find one who talks to you ,not at you. Thhat goes for both oncs and gp's . Some one should write a book on "How to train your doctor". With your current one I would suggest a rolled up newspaper...:)   Ron.

    Ha! I knew I forgot something...

    the Christmas fund!  No wonder he doesn't like me.  Probably made it harder for him to make that payment on his boat...

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #12
    Likely for the best, AA. The

    Likely for the best, AA. The guy can't be too bright to give you up as a patient.  Your cancer is so rare and your situation is so unique that you would think he would want to stay connected with you indefinitely.  If he felt passionately about what he does for a living, he would want to stay involved with you.  Find someone you like and trust who is interested in you as a patient.  I'm sure this is easier than done.  

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #13
    tanstaafl said:

    "our" oncs...

    ...never lasted more than once anyway (I do spend an hour or two with them).  Time to assemble your own team and monitoring plan.  Perhaps treat it as an opportunity. The elements are what skills are needed, what personal attention you need, what the elemental services cost, and what net payments are possible, whether insurance approved or not.  

    e.g. "Our core team":  the last surgeon, an outside radiologist, an alternative/internal medicine dr and...DIY for biomarkers. Our doctors know the case personally.  My last visit for an oncologist was 3 years ago due to insurance reasons.  I'm sure your team will look different, but the idea is finding needed competences that have an interest in you.  We do, and are always prepared to, consult more drs when needed.

    I have never been impressed with standard guidelines for bloodwork - too many catchable surprises occur on the boards.  So we get more bloodwork with more markers, more frequently.  Is there a test company or insurance network with better prices?  The biggest issue is work up data that would be desirable from the earlier surgeries.  

    Sounds like your financial biggie is the insurance pre-approval and/or cost of PET/CT.  What frequency do you want and what will insurance approve?   Cash prices are all over the road map.  It is a lot out of the way, but I found a modern PET/CT site for $600 scans several years ago.    

    What are the insurance restrictions or cash costs on dr consultations at this point?  I would actually have two-three doctors ready go to, perhaps your surgeon for an annual consult, or any suspicions.  Given the number of PET/CTs you've done, I would think you might already have a personal or chosen radiologist that reads your scans.  What would be your ideal dr schedule vs "standard"?

     

     

     

    We're pretty limited in choice,

    because we have insurance through an HMO.  We only have a few doctors to choose from.  And the radiologist is whoever is on duty the day you get scanned.

    My oncologist actually refused to refer me for a PET, even though previous reliance on CT scans alone had led to my doctor thinking I was in remission, when in fact the cancer was spreading like wildfire.  I was in massive pain, but he sent me off to a GI doc, because "clear CT scan means NED".  Turns out that's not exactly true in the world of crc Undecided.  2nd emergency surgery due to mis-dx saved my life, but it was a close call.  First thing they said to me in the hospital was "why didn't you have a PET?".  If I hadn't been such a mess, I probably would have strangled someone.

    Anyway, we threatened to sue, and he caved in and made the referral and has continued to do so ever since.  So that part is working well, and thank goodness too, as the PET scans have twice now caught tumors that weren't visible on the CT past of the exam.

    Making a real change will mean changing health care plans, and that is a little nerve-wracking.

    Plus I do like my surgeon quite a lot...as long as he is there, I'll probably stick it out.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #14
    Chelsea71 said:

    Likely for the best, AA. The

    Likely for the best, AA. The guy can't be too bright to give you up as a patient.  Your cancer is so rare and your situation is so unique that you would think he would want to stay connected with you indefinitely.  If he felt passionately about what he does for a living, he would want to stay involved with you.  Find someone you like and trust who is interested in you as a patient.  I'm sure this is easier than done.  

    Well, exactly!

    I'm a special snowflake!  How dare he get rid of me??

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #15
    sky123 said:

    Jeez...

    Hi AA, can't believe your onc broke up with you! You wrote that it has been 3 years since you've seen him; who has been doing your observational work for you? Three years seems too early to be set free, although I sure hope it is, and remains, a moot point for you!

    hugs to you!

    We've been in touch via email...

    I send him a message reminding him it's time for a scan, and he puts in the order, and posts the results.   Even when I had some stuff going on that led to my last couple of surgeries (which were more recent), this is how we did things.  I just saw my surgeon in person as needed.

    Seems like an efficient system to me...I get pretty anxious when I have to go into his office.  Can't imagine why!

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #16
    marbleotis said:

    It is all about the relationship

    AA,

    You do not realize it but he may have done you a fovor - you said you did not like him anyway.  We need to have great Oncs, but also like them.  We need to have a patient-Dr realtionship.

    Challange yourself to find a new one that you are comfortable with and can see yourself with for many years to come.

    He sounds like an impersonal jerk.  I'll bet he does not even write the emails, his staff probably auto-generates based on last visit date.  Just like him go and let go of the past!

     

    Hmm. Went and reread his email after seeing your comment,

    and you're right!  It was written by his nurse.  Gotta love the personal touch.

    (this place needs an eye-rolling smiley...not enough sarcastic emoticons)

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #17
    I think the same way. My GP

    I think the same way. My GP is a big part of the reason I have cancer. I would say continue to see an oncologist for two more years but not that one. I'm fighting with scans too. My oncologist does not see yhem as necessary.

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #18
    I can just see the email form

    I can just see the email form letter . . . Dear (fill in name hete)  . . .what if you never check email! Lol jerk.

  • danker
    danker Member Posts: 1,276 Member
    #19
    annalexandria said:

    We're pretty limited in choice,

    because we have insurance through an HMO.  We only have a few doctors to choose from.  And the radiologist is whoever is on duty the day you get scanned.

    My oncologist actually refused to refer me for a PET, even though previous reliance on CT scans alone had led to my doctor thinking I was in remission, when in fact the cancer was spreading like wildfire.  I was in massive pain, but he sent me off to a GI doc, because "clear CT scan means NED".  Turns out that's not exactly true in the world of crc Undecided.  2nd emergency surgery due to mis-dx saved my life, but it was a close call.  First thing they said to me in the hospital was "why didn't you have a PET?".  If I hadn't been such a mess, I probably would have strangled someone.

    Anyway, we threatened to sue, and he caved in and made the referral and has continued to do so ever since.  So that part is working well, and thank goodness too, as the PET scans have twice now caught tumors that weren't visible on the CT past of the exam.

    Making a real change will mean changing health care plans, and that is a little nerve-wracking.

    Plus I do like my surgeon quite a lot...as long as he is there, I'll probably stick it out.

    Insurance

    HMOs can be a real pain.  Since being on Medicare with a supplement, I can go to any Dr. without a referral.  My $300.00 a month premium has been a true bargain. The total cost ,so far,of my cancer has been over $600,000. My only cost has been the insurance premium.  Good luck with finding the best insurance plan for you.!!!

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #20
    Helen321 said:

    I think the same way. My GP

    I think the same way. My GP is a big part of the reason I have cancer. I would say continue to see an oncologist for two more years but not that one. I'm fighting with scans too. My oncologist does not see yhem as necessary.

    My GP

    thought I had lupus.  Because his wife had it, I think he was seeing lupus patients wherever he looked.  Considering that I didn't have the tell-tale rash that goes along with lupus, it was a little out of left field.  Meant a six month delay in getting started on the right tx.

    Our experience seems to be more the norm than not...lots of initial misdiagnosis.

    The only drawback to being so freakin' youthful!

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #21
    oncologists

    When my brother had non hodgkins lymphoma, he was NED for many years but still went back annually for blood work and an exam to make sure nothing changed. The first year I believe was every 3 months, the second was twice a year and then it was annually.

    I really think you need to be monitored by someone that is familiar with your disease. GP aren't always the best choice. This guy sounds like a jerk, so good riddance. I'd look for another oncologist. Good luck.

     

    Lin

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