Changing medical oncologists 4 years after diagnosis/treatment

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Texas357
Texas357 Member Posts: 1,552

Has anyone changed medical oncologists after surgery/chemo/rads? I'm wondering if a doctor would accept someone new who is in the "monitoring" stage?

Here's my situation. My medical oncologist is very old school. He doesn't believe in anything other than prescription drugs. I asked him about diet/exercise ... things that are boldly discussed on the American Cancer Society website ... and he poo poos them.

But more alarmingly,

1. He refused to order a cholesterol test even after I pointed out the warning label on Femara says it can raise cholesterol. He doesn't believe in cholesterol testing!

2. Six months ago, he told me I was starting to enter menopause. Huh? He has prescribed Femara for me for 3 years, and that's for post-menopausal women. Oh yeah... and I had a hysterectomy 5 years ago!

3. A few weeks ago, he walked into the exam room and announced that my bone density had fallen year over year. When I asked by how much, he just shrugged. But he started pushing a new drug that he wanted me to try. When I asked for the studies he kept referring to, he said he didn't have them.

So I got a copy of my bone density report ... and my numbers had actually improved, NOT gotten worse. Even scarier, the drug he was pushing is not recommended for people who have a history of parathyroid disease which I have.

I cringe whenever it's my appointment time. I want a doctor who is a partner in my health, not someone who doesn't even get my medical history correct.




Comments

  • sewingnut
    sewingnut Member Posts: 1,129
    edited November 2012

    RUN don't walk to another Onc.  You need one that will listen and discuss things with you. It sounds like your current Onc isn't really with it and not willing to work with you. I know when I want something I take in studies for whatever I'm asking for. It has to be a two way street.  Good luck.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2012

    Hi Texas,

    Sounds like it might be time for a new doctor! To find a new doctor in your area, it might be helpful to check out the main Breastcancer.org site's page on Deciding Where to Go for a Second Opinion.

    Hope this helps and good luck to you!!

    --The Mods

  • TectonicShift
    TectonicShift Member Posts: 752
    edited May 2014

    Find a new oncologist! Ask for recommendations. Are you in Texas? Just pick up the phone. Don't think about it too much. Just make the baby step of picking up the phone and calling another oncology office for an appointment. A big university hospital, or MDA, or someplace like that. Good luck!

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2012

    Yes, I'm in Texas. I just didn't know how well received a post-treatment patient would be. I appreciate the overwhelming support that I'm making the right decision.

    Another related question ... has your medical oncologist ever talked with you about lifestyle habits that may help avoid recurrence, or am I expecting too much on that front? (I'm ready to switch anyway because this guy doesn't bother to know my history after seeing him for 4 years.)

  • TectonicShift
    TectonicShift Member Posts: 752
    edited May 2014

    Yes! Mine said exercise, take baby aspirin, keep your weight down. And he didn't volunteer Zometa for me, but when I asked about it, he said, "Sure, we can put you on Zometa. The benefit is still controversial but there does seem to be some small benefit and I think it would be a good thing for you to do as you fit the profile of the patient helped by Zometa."

    He doesn't do tumor markers or regular scans. And he never volunteered anything about supplements other than baby aspirin. Though if I ask about a particular supplement he logs onto the Memorial Sloan Kettering web page that discusses supplements and we talk about what it says.

    If you have an oncologist that pooh poohs exercise to reduce chance of recurrence, you have a bad oncologist imho. Say what area of Texas you are in and I bet some people will PM you with recommendations.

  • lago
    lago Member Posts: 17,186
    edited November 2012

    Texas I'm about to have to change ALL my doctors since my current insurance didn't renew their contract with the treatment center/hospital etc where I was treated. I can't afford to pay out of network prices. I hoping my DH's company has some other option but it doesn't look good… or I land a job before April when my next appointments start.

    Change happens all the time. These doctors gain and lose patients for many reasons. I hope you find a good one.

  • JacquelineG
    JacquelineG Member Posts: 282
    edited November 2012

    Agree with everyone above! Change your doctor ASAP, you'll be so happy you did.  My oncologist definitely discusses exercise, diet etc. and is very open to everything i bring up to her (zometa, baby aspirin, etc). I hear about people changing oncologists all the time. All that needs to happen is a transfer of paperwork. You won't regret it, and this is a great place to ask for people's recommendations in your area! best of luck!

    jackie

  • Bugs
    Bugs Member Posts: 1,719
    edited November 2012

    Yep, go.  You need to be able to trust your dr and this one doesn't seem trustworthy.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Texas -- wow does this sound familiar!  In September I saw a psychologist just to have someone to vent to about my onc.  Seems each appointment that I bring articles or ask questions about something about BC in the news or internet, she says she doesn't listen to news or read anything on the net.  She also doesn't remember my DH's name or that I am married; and I have to remind her of what testing I've done post-treatment !  So I am now going to try an internist and maybe others have done that too.  The internist is more apt to treat us as "whole bodies" not just for our cancer.  Hope this helped.  (()) shelly

  • Momine
    Momine Member Posts: 7,859
    edited November 2012

    Good grief! My last onc visit, he grumbled at me because I had failed to give him my starting cholesterol numbers. Both my docs are very on top of monitoring bones and cholesterol while I am on femara. They also monitor clotting risk and a couple of other things that I forget now.

    Like yours, they are not all that into diet and exercise, but they do support my efforts at least.

    Get another doctor.

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2012

    Shelly56: That's exactly the type of non-concern I'm talking about. I have a gyno appointment this morning and I plan to ask him for a referral. Thank you all so much!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Texas:  I hope you have good luck on your journey to find someone competent & caring.  It is so bad with my onc that I have decided not to even ask any questions when I do see her, and just save my questions on stuff for the internist.  Hugs, Shelly

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2012

    My ob/gyn gave me a referral to someone he believes I'll  like better. Since I just saw my medical oncologist, I'll wait until after the holidays to make an appointment with this new doctor to see if I like her better. I have a good feeling about her.

    Shelly, I know the feeling of not wanting to start a conversation with your doctor. And I hope that you are also able to find someone you trust.

  • lago
    lago Member Posts: 17,186
    edited November 2012

    Texas that's awesome. My gut says you have no where to go but an improvement.

    I too found out some new today too. My insurance and treatment center started negotiating again… so they may work something out. I think I might just have to play the lottery today. Sounds like a good vibes day for everyone.

  • jenlee
    jenlee Member Posts: 504
    edited November 2012

    Hi Texas357, I changed MO's after neoadjuvant chemo and stage 1 DIEP reconstruction.

    There was little for the MO to do at this time except review my records (ehich she did thoroughly), prescribe Tamoxifen and monitor me quarterly. But I'm much more comfortable with her than my previous MO. And I do like having a woman to discuss TMI issues such as vaginal dryness, hot flashes, etc. Follow you instincts, get recommendations from others if possible, and maybe from your ob/gyn. Best wishes

  • Texas357
    Texas357 Member Posts: 1,552
    edited November 2012

    I got what sounds like a really good referral from my OB/GYN. I plan to make an appointment after the holidays just to meet this doctor to see if I want to transfer my records over to her. Fingers crossed!

  • Texas357
    Texas357 Member Posts: 1,552
    edited January 2013

    I finally met with the new medical oncologist today, and I love her! She's easy to talk with, candid and treats me like I have a brain (unlike my former oncologist). She made a few points that caused me to remember just how serious this disease will always be, but I feel like I can partner with her. Thank you so much for your support as I was making this decision.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2013

    Texas, what points did your new onc make, specifically? 

    I know I'll need to be vigilant for the rest of my life--regular dr. visits and testing, lose weight, exercise faithfully, eat healthy, limit the wine to a couple of glasses a week--anything else?

  • Texas357
    Texas357 Member Posts: 1,552
    edited January 2013

    She mentioned that now that us Stage 3 ladies are living longer, they are discovering that our recurrence risk remains higher for at least 10 years. She told me to plan on staying on Femara for at least that long.

    They also are discovering that some of the chemo drugs may have consequences 10-15 years later, but that percentage is very small and doctors have learned a lot in the last 10-15 years on how to administer those drugs more safely so I'm not too worried about that one.

    She also advised me to take at least 3,000 to 4,000 IUs of Vitamin D. My last doctor didn't believe that diet, exercise or lifestyle had any impact on recurrence. I always felt at odds with him. This lady is a refreshing change of pace!

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    Texas, thanks for reporting back. I was planning anyway to ask my onc about long-term femara use, but good to know.

    As far as chemo consequences, I say "la-la-la-la-la" and hold my ears ;). It scares me silly, but I really don't want to think about it.

  • Texas357
    Texas357 Member Posts: 1,552
    edited January 2013

    Just a correction to the Femara statement ... the doc said the longer risk is for ER+/PR+,  which come to think of it is implied because we're the ones taking Femara.

  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2013

    LOL, Momine, about the long term chemo risks--when you're looking at stage iii, I think the risks of not doing chemo are so much higher (and sooner) that it's not like it's much of a choice anyway, so I prefer to not think about them!

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2013

    Momine and Roses, I had several people make disparaging remarks about chemo both before and during my treatment.  "It's poison."  "Have you considered plant sterols/yew berries/hokum lokum whatever?"  "My sister had chemo and she almost died from it." 

    I wonder if these folks, given the same odds and choices, wouldn't go for the value-added odds and just take the chemo?  Yes, it's poison.  POISONOUS TO THE CANCER!

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    Elizabeth, that "poison" meme drives me insane, as does the "my sister/mother/neighbor died from chemo."

    I know that people do die from complications of chemo sometimes. However, in most cases, when you start questioning these people, usually the patient in question was stage IV and most likely died from cancer, unfortunately, in spite of the chemo. Now I do think it is highly debatable whether it really serves any purpose to put terminal patients on rough chemo right up till the end, but that is a very different discussion. Personally, I imagine that I will be saying "no thanks" at that stage, but of course I can't know how I will actually feel and think about it if that day comes.

    It also drives me nuts when people argue that chemo "doesn't work." When questioned, what they usually mean is that people die in spite of chemo, so it does not work 100%. Well, duh! That is like saying that aspirin doesn't work because although it made your headache go away yesterday, now you hurt again. And again, there are cases where the cost/benefit of chemo doesn't work. In my case, however, chemo has, statistically at least, vastly increased my chances of still being around in 5 and 10 years.

    But yeah, an actual cure would be nice.

  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2013

    Elizabeth, Momine, all I can say is I completely agree. For goodness sake, this is a deadly disease that's trying to kill us--sometimes a cutting, poisoning, and burning is completely appropriate.

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