New oncologist=questions

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kcat2013
kcat2013 Member Posts: 391
edited September 2017 in IDC (Invasive Ductal Carcinoma)

My MO recently left and moved to another state to be close to her grown kids. The oncology clinic I go to assigned me to her replacement and today I saw him for the first time. I have a few questions after meeting with him though. I'll start off by saying he was kind and professional throughout the whole appointment. BUT, he questioned the treatment plan I had. He told me that he never would have ordered an oncotype for me (disregarding the Her2+ status--that was not known until later down the line) because he said that stage 1a is "not even eligible/applicable for the test". He also told me that as 1a (once the Her2+ status was known) would have said NO chemo or Herceptin for me. I'm not really concerned that he didn't agree with my past treatment because it's over and done and my treatment was recommended by the board of oncologists at my clinic.

But he also went on to tell me that he would probably recommend only 5 years of Tamoxifen instead of 10. His reasoning was that I had "bilateral mastectomies and no breast tissue is left" and "without breast tissue the Tamoxifen isn't really needed". I have always been under the impression that Tamoxifen helped prevent both local recurrence AND distant?? So why did he say what he did??

So basically I was a bit put off because he seems to not be entirely accurate with everything. I know that stage 1a is absolutely eligible for oncotype and I'm pretty sure that Tamoxifen is used for preventing distant recurrence and has nothing to do with having a mastectomy. I'm trying to decide if I want to continue with the new oncologist or not.

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2017

    You need a new new oncologist. This seems inaccurate.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited September 2017

    sounds like he is a "less is more" type of doc. There are those that go all out (sounds like your previous MO) and those that feel the bare minimum to get by is ok (because that's what the studies show-but we also know that in those studies, the minority of patients didn't fare as well as the majority of patients). Now, if he has a crystal ball that tells him if you are in the majority of patients or the minority of patients and that's why he's recommending what he is that's a different story. And he really needs to share that crystal ball with others...

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited September 2017

    I agree with ksusan. Stage 1a is exactly why the Oncotype test was created (I was 1a and my score was 42, so there's that). And Tamoxifen is often the first line of defense in ER+ metastatic recurrence so I don't know what having (or not having) breast tissue has to do with taking it. So odd to hear these things from someone trusted with your BC treatment...

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  • kcat2013
    kcat2013 Member Posts: 391
    edited September 2017

    Ksusan and Nancy I agree it is odd, and disconcerting, to hear from the doctor in charge of my treatment. It just doesn't make sense and I don't like the idea of not being able to feel like I trust my doctor's judgement/knowledge. Nancy, my oncotype was 54 and I was told when first diagnosed that the Her2 component of my tumor probably didn't influence the score because the oncotype tested me as Her 2 negative.

    Lula, I did get the impression that the doctor was the less is more type. And yes, it seems like he thinks he has a crystal ball! My old MO was actually quite careful on quality of life vs. risk of recurrence and made choices over the past few years that landed squarely on the quality of life side of things. I was hoping that he would balance things similarly but he went completely one direction.



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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2017

    Get another oncologist. This one is misinformed. If he disagreed with the treatments you already had, he might not give you standard-of-care going forward. There are tests that can be done toward the end of your 5 yrs. on Tamoxifen to see if you’re metabolizing it effectively; if not, you might be recommended a different hormone-suppression protocol.

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  • kcat2013
    kcat2013 Member Posts: 391
    edited September 2017

    ChiSandy, I really didn't know what to think after today's appointment. It certainly didn't go as I expected. I'm disappointed because my experience with this clinic as a whole has been very good up until this point and I don't like the idea of leaving but I also don't know if I'm comfortable just switching oncologists within the practice either. So I think my only option is to seek a new oncologist outside of this clinic. I'm not thrilled with going on a new doctor search though!!

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  • Outfield
    Outfield Member Posts: 1,109
    edited September 2017

    kcat, it's a little odd that a doctor would disparage past treatment directed by another doctor in the same clinic. Unless there had been a medical error, it's not very professional behavior, especially since what's done is done. That makes my nose start sniffing for arrogance, which I think can be a big Achille's heel for doctors. Arrogance can shut the door to absorbing new information that is contrary to what they think they know.

    I'm not an expert on which organizations recommend the Oncotype in which settings, but I did a lit scan and the one thing I can say is that the questions about the role of Oncotype testing aren't fully answered. In this situation, the over-arching philosophy of the organization making the recommendation has a lot of sway in the recommendation . For example, the US Preventive Services Task Force very often concludes that there is "insufficient evidence" for or against something, so they don't come out and recommend it. That's just how they are; they require a certain standard of evidence before they recommend that time and money be spent on something. On the other hand, professional societies, who see it as their mission to beat a disease, may look at the same evidence and feel confident in making an actual recommendation.

    I think your plan to seek a new oncologist is a good one. In my personal experience, the best doctors have told me where there are areas of uncertainty and allowed me to be part of the decision.


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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2017

    Yep - sounds like a new oncologist is in your future! I think that it would be hard but not impossible to change doctors within the same practice. When I was hospitalized, it was the on call MO that saw me and not my MO. That might be difficult if you happen to need to see someone quickly. You may not be able to avoid this doctor.

    On the question of length of treatment with Tamoxifen - my MO said at the beginning of my treatment that I would probably be on it for 10 years and that by the time I reached that milestone, it was entirely plausible that they might be recommending it for life! Since then I've read some new information that perhaps 10 years is really just giving patients 5 more years of SE's. I'm glad that I don't have to make any decisions about how long I'll be on it since I just started!


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  • kcat2013
    kcat2013 Member Posts: 391
    edited September 2017

    outfield, I also felt it was odd that he would so openly disagree with another physician in the practice--especially over treatment that was prescribed 4 years ago. I left feeling pretty conflicted because he seemed to genuinely care about my treatment.

    notverybrave, I think I'm going to need to look at completely different practice for the reasons you mentioned. I don't want to deal with unexpectedly having to be seen by this doctor. Over the years I've met other doctors in the clinic when I needed to be seen last minute or if my doctor had an emergency/schedule change.

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  • larajv
    larajv Member Posts: 12
    edited September 2017

    I guess the question is how do you feel about the new approach? It's is still your body, your choice! I guess if it was me, I would want to be 100% certain that having a double mastectomy actually did remove all the HER2 receptors/cells.

    I disagree that stage 1 shouldn't undergo FISH testing. From what I have learned all breast cancers should have FISH testing

    Oncotype is use in the early stages of cancer to figure out a woman's risk of DCIS (ductal carcinoma in situ) coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after DCIS surgery. It.would seem your first MD was correct in ordering this test

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  • bluepearl
    bluepearl Member Posts: 961
    edited September 2017

    Because anti hormonal block breast cancer cells from receiving estrogen that they NEED to grow, tamoxifen and the AIs are called SYSTEMIC treatments for a reason....they target any breast cancer cells that may have gotten away and starves them to death. This oncologist needs to go back to medical school as he is wrong on so many counts. And I am not afraid to say that anymore. Small rumours can be very aggressive tumours, especially with certain markers like Her2+ and Pr-. Do not continue with him. You can never trust a doctor that has given you inaccurate information. One of mine lied to me. I only found out because another doctor read me my pathology report. I can never trust him again. BTW..glad your treatment plan was with the other MO.....which seems to me, to be the right protocol.


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