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"Dumped" by my oncologist after 3 years

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Lindissima
Lindissima Member Posts: 37
edited June 2016 in Stage I Breast Cancer

Well 'dumped' may be  too  strong  a word, but that is how I felt.  As my oncologist was leaving  the room after my last appointment, he casually mentioned that I would be seeing the Nurse Practioner instead of him from now on, though I would still be under his care if I needed further treatment. Then he just walked out the door!

I was too stunned to protest and felt blindsided.  After asking a few questions of the receptionist, I learned there is a new 'Survivorship Program' women are being transitioned into who are no longer in active treatment at the teaching hospital where I receive treatment. I also learned a friend of mine, who is  2 years into being Stage 4 is also seeing the nurse practioner instead of her onco at the same place.

From my reading of these boards, it seems most women here see their onco's for a full five years after diagnosis.I was initially told that is what I would be doing too. I was always careful to have my questions ready and organized so our visits could be efficient.

My oncologist was terrific with me during treatment and really went to bat for me, getting me Zometa when it wasn't as commonly used as it is today anong other things.  I really hesitate to leave  his care or the teaching hospital, since they are very well-respected, but I also feel cancer is a very serious disease that needs a real MD monitoring it. I am fine with an NP for many things, but this just makes me uneasy.  I think this is a general policy decision at this hospital, to free the onco's for women in active treatment, also a cost cutting measure.

Anyone else happy seeing just an NP? Am I overreacting? Any thoughts? 

Comments

  • denise-g
    denise-g Member Posts: 353
    edited August 2012
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    I am a Stage 3 person only one year out.  Eighty percent of the time I see my NP.  She is great.

    If anything comes up, she calls the Onc.  To be honest, I prefer my relationship with her as she has

    more time and is extremely knowledgeable.  I think this is happening more and more.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited August 2012
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    my surgeon rolled me off to her NP last spring, she then acted annoyed when my mamo 3 months later required her attention so I could get a mamo done!

    onco has just stretched out the timing between visits but has not fired me yet~ (I am 4 years out and DCIS)

  • coraleliz
    coraleliz Member Posts: 158
    edited August 2012
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    I was transitioned to a PA without being informed why or that it would even take place. I'm not at a major cancer center. I have no idea who I'll see next time. Don't even know when my next appointment will be. The PA asked me how often I come in. I told her that I had an appt 3 months after starting Tamoxifen & then went to 6months(my 1st PA appt). I really hope I go to once a year. Just enough to get my Tamoxifen RX refilled. They just aren't doing  anything for me. Waste of time to have me fill out a side effect questionaire when they can't do anything about the side effects anyway. After 5 years, I'm out of there. Totally understand feeling "dumped".

  • bevin
    bevin Member Posts: 519
    edited August 2012
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    Hello all, I see the Onco one visit and the next the NP, they rotate me each visiti.

  • JeanGenie
    JeanGenie Member Posts: 1
    edited August 2012
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    During my treatment, I wanted to move into my oncologist's office.  I can't imagine not getting to see him for my follow-ups either!  But maybe after a visit or two you can get the same sense of comfort from the NP.

  • NatsFan
    NatsFan Member Posts: 1,927
    edited August 2012
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    My first onc tried the same thing two years out.  Like Coraleliz, I wasn't even told - it just happened.  The first time it happened I figured the onc was busy and that's why I was just seeing the NP.  Then 3 months later when the NP came in again, I asked about seeing the onc.  I was told that I'd only be seeing the NP from now on, and if I wanted to see the onc, I had to make a special request for each appointment.  I was NOT comfortable with the NP - she was young and inexperienced and not very knowledgeable. 

    So I removed that onc from my medical team.  I called my PCP, my gyn, my RO, and friends who'd had cancer for recommendations.  One name kept popping up, so I made an appointment for a consultation.  I told this new onc exactly why I was leaving my old onc.  I said I had no problems with NPs or nurses handling the initial part of the appointment, but I wanted to see my onc at least for a few minutes at each visit.  She agreed with me completely and promised I'd always see her.  I liked her immediately, and she spent well over an hour with me at that first visit.  I'm almost 5 years out so I'm at 6 month intervals now, but she's kept her word and always makes sure I see her at each visit. Her NP is very good and I have no problems with her handling the initial part of the visit, but I want a chance to talk with my onc and be examined by my onc each visit.  Actually, it worked out well.  As we all know, chemo and AIs have some nasty s/e, including sexual s/e like vaginal atrophy.  My first onc was an older male, and always looked extremely uncomfortable whenever I tried to bring up the issues I was experiencing - looking at the ceiling or floor or anywhere but at me.  My current onc is female and great!  We've had amazingly frank discussions about the sexual side effects, and she's been a real help in working to overcome them.

    I had no problems with the actual treatment prescribed by my original onc.  My current onc also reviewed my files and said she'd have recommended the exact same protocol, so there's no issue with treatment.  But like you, I didn't appreciate being dumped when apparently I was no longer interesting enough to be seen by the onc.

    My feeling is that I'm in charge of my medical team.  If someone doesn't measure up to my expectations, then I remove them from my team and find someone who meets my expectations.  In this case I'm so glad I did.

    Good luck!

  • peggy_j
    peggy_j Member Posts: 89
    edited August 2012
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    Nats_fan wrote: My feeling is that I'm in charge of my medical team. If someone doesn't measure up to my expectations, then I remove them from my team and find someone who meets my expectations.

    I agree. I dumped my first MO after our first meeting. He wasn't horrible, but I felt like there was no "chemistry."  FWIW, I asked my BS for her recommendation of MOs. At first she spoke the party-line, "They're all good, etc etc" but when I pressed her and showed her the list of docs (i.e. that I was serious) she definitely had her opinions. 

  • Lindissima
    Lindissima Member Posts: 37
    edited August 2012
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    Thanks to  you all for your excellent replies.  I have decided to see the NP for one visit, then request my next visit  be with  my oncologist. (I go every 6 months).  I have been told contradictory things about whether or not I may continue to see just the onco. My friend, who is Stage IV is very happy with the NP, so I thought I would give her a chance.

    At my  National Comprehensive Care teaching hospital, I am not allowed to change oncos.  I would have to leave the system and that would not be a good option.  I really liked my oncologist  and the general level of care at my hospital prior to this  and do feel this was not my onco's  decision, but made by 'higher ups.'.  It is part of the whole movement towards 'cost control' by cutting back access to MD's and moving  from face to face interaction  to 'online surveys'.

    Accorditng to the  'Survivorship' web page , I was supposed to  have gone to a workshop to prepare me for what this transition would mean, but I was never told about it.  I plan to call the coordinator of the Survivorship Program and voice my concerns.

  • 1Athena1
    1Athena1 Member Posts: 672
    edited August 2012
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    Call me old fashioned, but if I pay to see the doctor I wanna see the doctor!

    OTOH, it is nice to have one's medical observation status downgraded when the topic is cancer.

  • lorithelion
    lorithelion Member Posts: 1
    edited September 2012
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    At my last visit to my MO, I was told by him that my next visit would be with his NP. I didn't say anything,but my blood was boiling. When I went to make an appointment with the scheduler, she said "Oh he wants you to see the NP. I refused. I said that I wanted an appointment with the doctor. MY insurance pays the same whether I see the MO or the NP. Since I have to pay a 20% co-insurance to see him, I am going to see him. It is my life that is in his hands and I am not going to let him mess with that. When I told her that I wanted an appointment with the doctor she looked at me funny,but she gave it to me. If the MO's can pass one off to someone less qaulified, I feel that it is easier to make one just a statistic as they don't have to have any emotional involvement,or connection with their clients. I can imagine being dumped in the "One size fits all," catagory.

  • Lindissima
    Lindissima Member Posts: 37
    edited September 2012
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    Thank you so much for your replies.  You have validated my sense of outrage at being handed over like this. When I told my friends about this (non BC), they thought I was overreacting. I must say I am a bit shy about forcing the issue with my MO as I don't want to alienate him.  If these responses are any indication, I am sure other women are bristling at this too. 

    Lorithelion and Natsfan, I admire your ability to stand up for yourself. I did the same thing when they tried to force me to see only an NP instead of my Primary Care doc, but I demanded to see the doctor, who agreed with me and was upset about these new policies.  For some reason, I find it harder to insist with the MO.

  • coraleliz
    coraleliz Member Posts: 158
    edited September 2012
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    I usually prefer to see NPs or PAs. Just not in this case.

  • sdstarfish
    sdstarfish Member Posts: 38
    edited September 2012
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    It wouldn't be so bad if they let you know ahead of time - something like, 

    "Hey, you're doing great! So in the future, this is how things work in this office, unless you need anything more involved. Then I'll definitely be accessible!"

    It's the little things...

  • christina0001
    christina0001 Member Posts: 449
    edited September 2012
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    You have to do what you feel most comfortable with. Full visits with my onc are rare and I am still in active treatment. I see the FNP or PA, and 2/3 of the time after my visit with them I'll get a quick "Hello, are you doing okay?" from the onc, which I am comfortable with. Whenever I have a serious concern, the FNP or PA almost always go to my onc and have him come see me, and that is reassuring. I'm sure I could also request to see him without any problems. My onc is awesome and if I called him right now with a concern, I know he would take the time to get on the phone and speak directly to me if at all possible. He's done it before. It sounds like your onc's office has done a poor job of explaining their process to you. Your concerns are quite reasonable. Frown
  • sewingnut
    sewingnut Member Posts: 475
    edited September 2012
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    I must be in the minority. All of my visits are with my Onc.  There are 5 Oncs in the practice I go to. There are 3 Oncs in the building at all times. There are no NP's or PA's. They are associated with US Oncology. I, on the other hand, after active treatment was finished only see my Onc every 6 months. I am told that is protocol in my area.

  • greenfrog
    greenfrog Member Posts: 73
    edited September 2012
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    My oncologist and I parted company on the day I finished radiotherapy. In his words "seeing me every few months won't stop your cancer from coming back but if it reassures you then I'll be happy to see you."  He was the least reassuring person I'd ever met so I was happy to say goodbye!

    Initially I had 6 monthly check ups with my breast surgeon. That was then extended to once a year when I was referred on to the Specialist Breast Nurse. (Who was absolutely brilliant I may add.)

    I didn't bother to go to my last appt because I now find the whole process too stressful. It's 4 years since dx. The anxiety building up to appointments is dreadful. Having to visit the same clinic I was diagnosed in surrounded by terrified women on the brink of getting their dx - all very unpleasant. When I phoned to cancel the appt they told me that a lot of women begin to "drop out" after about 4 years and so they have started to integrate that process of "stepping away" into their follow up protocols.

  • Lindissima
    Lindissima Member Posts: 37
    edited September 2012
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    Thanks again to everyone for your thoughtful replies.

    I am getting more comfortable with the idea of seeing the NP who my friend sees and really likes.  I will voice my concerns to her, as NP's (and often women in general) are more approachable than doctors. I am stil getting Zometa every 6 months, as per the Austrian protocol, so there are still decisions to be made.

    SD starfish you are absolutely right...my onc didn't handle this well.  I think he felt uncomfortable doing it as he told me as he rushed out the door--as an after thought. 

    But thanks again everyone! 

  • mittmott
    mittmott Member Posts: 17
    edited September 2012
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    I also only see a NP, once  a year.  I was told by my oncologist she didn't need to see me, since I wasn't on anything, no tamox for me, as I got my first cancer while on tamoxafin for a full year.  My breast surgeon left the hospital two years after I had my bilateral mast for my second cancer.  They wouldn't give me a new surgeon, I had to go into the  survivorship program.  My regular md said he didn't feel comfortable with me not having an onc and only seeing a np once a year, so he referred me to someone he knew, and she took me on.  I see her once a year now. sorry about the typos, typing with my cat's head butting my hands. 

  • coraleliz
    coraleliz Member Posts: 158
    edited September 2012
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    mittmott-I hope my BS stays in town forever, since I have no plans to move. I have confidence in her that I never had in my MO. I'm hoping to stop MO visits after my 5 years of Tamox are up. I guess I could stop after 4 years because I'll have a presciption for the lasat year. As Greenfrog mentioned, it's depressing going to the cancer center. I'm hoping to move on. And I really don't see how anything the MO's office is doing will detect a reoccurence.

    ETA-I guess I want to dump them?

  • edwards750
    edwards750 Member Posts: 1,568
    edited September 2012
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    I am supposed to see my ONC every 6 months for the first 2 years and then yearly after that. There has been no mention of handing me off to someone else but maybe that is coming. It doesnt bother me as long as she/he is qualified and we connect. I like my ONC and did from the start. She came highly recommended and lived up to the billing(no pun intended). Actually there could be a positive side to the passing of the baton and that is we dont need the EXPERT every time. I like the rest of you dread the impending visits. I get so nervous and anxious. My last mammogram of the infected breast only is Oct 31. Hows that for an omen Halloween? and then my regular mammograms start again. Bottom line is you do what makes you feel comfortable and secure after all it is our lives they are dealing with.

  • mittmott
    mittmott Member Posts: 17
    edited September 2012
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    I know it's nerve wracking, but I feel it's important to be seen a few times a year just to be on the safe side.  A few extra eyes can't hurt. I do have to say, I had another biopsy in Feb.. (everything was fine thank goodness), but my NP was quick to act on my concerns.  They set me up with a top surgeon for the biopsy, and when things turned out fine, they put me back in the survivorship program.. I'm with a top  cancer center.

  • Eileen0417
    Eileen0417 Member Posts: 5
    edited November 2012
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    I have to admit I would not be comfortable with this at all. I agree, this is cancer not the flu.

    I am almost 7 years out from my first diagnosis and I am still seeing my medical and radiation oncs. I have never been sloughed off on a NP. I have been closely followed with annual MRIs also.

    I have just been diagnosed with a second breast cancer and my docs are all over it. If I were you I would make an apt. with him to discuss it and see if it is possible to continue seeing him. If not I would go else where. You have to do what makes you feel comfortable, but I never heard of such a thing.

  • Eileen0417
    Eileen0417 Member Posts: 5
    edited November 2012
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    Wow, this is so suprizing that so many of you see NPs. Especially a stage 4 patient. I have always seen my onc, and he examines me each visit and sits and talks with me and seems genuinely concerned not only with my physical health but with my emotional health and any concerns that I have.

    I just think it is wrong to push patients off on a NP, as someone said, you are paying to see a doctor. That is who you should get. This is cancer!

  • JerzeeGurl43012
    JerzeeGurl43012 Member Posts: 1
    edited November 2012
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    I was told back in Sept. that my ONC who I absolutely adored and had a great relationship with was leaving. She hand-picked my new ONC who had actually trained her. My old ONC left the beginning of Sept. I have YET to meet my new ONC. I have been seeing her NP who did not listen to me when I needed her to. I ended up very ill and eventually spent several days in the hospital because she did not listen to me. This is NOT the flu, but cancer and I would like to at least "meet" my ONC. It has been 2 months and I have yet to lay eyes on this woman. If they knew I would never meet her, it would be nice for them to say it instead of ... she is not in that day. BTW, my NP came to see me when I was hospitalized and I made it CLEAR that she was the reason I was there. She understood and apologized. I forgave her. We now have MUCH better understanding and she is very attentive and listens to me now. If ONC's are going to push their patient's off on NP, it is important that NP's get as much experience as possible to ensure they are experts at what they are doing. If I am not connected with my ONC, I hope she is not getting paid for being absent. God Bless my fellow BC sisters!!

  • Faye33
    Faye33 Member Posts: 10
    edited March 2016
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    I'm dealing with a similar situation. I'm six years out from my original diagnosis, but I had a recurrence back in March of 2015. I was shocked when the next appointment after my recurrence I had made with my Oncologist I was told I had to see his Nurse Practicioner. Silly me. I assumed if an Oncologist's patient got cancer again, they would want to see them. I brushed it off, since I'd seen my Oncologist the appointment before, but was extremely mad when at my next appointment I had with my Oncologist, I was once again pushed to the Nurse Practitioner as well. I needed a med consult and possible change and my Oncologist had told me on the phone he'd go over that with me at this appointment. I told the nurse my concern about not seeing the Oncologist when she checked me into my exam room and all she could tell me was the doctor had reviewed his cases for the day and decided he did not need to see me. So I proceeded to give the Nurse Practitioner a chance. The Nurse Practitioner would not have even considered a med consult if I hadn't brought it up at the end of our appointment and she admittedly had no clue how the oncologist would want my meds treated. She was entirely under qualified to treat me at that appointment. So instead of me being afforded the oppurtunity of discussing what med I'll be taking for the next four and half years, side effects and options with my oncologist, I simply recieved a message on my online chart later in the day telling me the med he wanted me to take. This med has side effects that could effect me the rest of my life. I'm an adult and should have been in on the discussion of how I should be treated. Needless to say my Oncologist is fired from treating me and I'm searching for a new one. I've also sent a three page letter to patient relations at our medical facility informing them of my concern that patients are being passed on to the Nurse Practitioner when she isn't qualified to advise them. I'm done with the Oncologist, but I'm concerned this is happening to other patients and am concerned that something more serious then an under-informed med change and hurt feelings will happen with another patient.

  • jelson
    jelson Member Posts: 622
    edited March 2016
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    Faye33 - I am sorry that you have been treated this way and I support your responses- your letter and your resolve to change doctors. I am 7 years out from DCIS and still see my actual RO and MO once a year. My MO - despite the fact that I haven't been on Tamoxifen for 2 years. My annual exam with the MO often gets rescheduled - this time I was given the alternative to see the nurse practitioner which I declined - having the luxury to wait 5 weeks til the doctor would be available. That office has never pulled a switch at the actual visit. I do see the nurse practitioner at my gyno/onc visits. The doctor who performed my hysterectomy left the practice, I was switched to another doctor at my first 3 mo check up where it was made clear to me that I had an excellent prognosis (easier to say with endometrial cancer caught very early than with bc) so being examined every six months by the same nurse practitioner in this instance is totally fine with me. You, HOWEVER, deserve to see the DOCTOR especially after a recurrence of bc AND being in active treatment.

  • Faye33
    Faye33 Member Posts: 10
    edited March 2016
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    Jelson,

    Thank you for validating my feelings. I had a good cry last night... Feeling very vulnerable not having an Onc who cares. I had a hysterectomy back in Dec. Pathology found atypical cells in a fibroid which was removed. My gyn is convinced it was on its way to a very deadly sarcoma. My gyn is so concerned with how my body seems to grow cancer so readily and how infrequently my Onc is following me that he personally offered to monitor me every month if I wanted.


    Thank you for sharing your experience! It has reaffirmed me that my expectations for my Onc to see me more frequently arenot unrealistic.

  • Lindissima
    Lindissima Member Posts: 37
    edited June 2016
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    Faye33,

    I haven't been on this site for a while so I apologize for the delaying responding. I am sorry to hear about your recurrence and experience with your MO who really dropped the ball. I am still seeing my NP but she is very young and not very interested in answering questions I may have about studies I have read or research I have done. She also switched me from a diagnostic to a screening mammogram for my last exam. That would mean I would be tested at a different facility with different machines and technicians. The techs I had been seeing for over 5 years knew me well and understood that my cancer was in a place difficult to image. Fortunately my Primary caught it and switched my appointment back to diagnostic. I wish you the best of luck and let us know how your new MO works out.

  • ml143333
    ml143333 Member Posts: 190
    edited June 2016
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    I am a year a little over a year out from chemo ending and having started on the AI. I see one of my MO's PAs at almost every visit, but my MO comes in at the end of every visit to talk with me a bit and I have the opportunity to ask him anything then.

  • lrm216
    lrm216 Member Posts: 534
    edited June 2016
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    My next anniversary will be 8 years, and I am still seeing my Onc once a year, by choice and for peace of mind.