Question about Cold hearted doctor

Likesquirrels
Likesquirrels Member Posts: 8

This week I had my 2nd monthly blood test because I am on Ibrance. I have been feeling good or say better since starting Ibrance 2 months ago. I have worked hard to bring myself around to normalcy since the crushing news of my cancer 3 months ago. I was feeling good until I met with this doctor who only talked about the negative aspects and outcomes of my disease. I left the appointment crying and a day and a half later, am still trying to pull myself back to where I was before my appointment. I see online that he is the only MD. in my area in this specialty. But I dread seeing him again. I know I'm dying, but isn't the here and now something to value? Especially since I had been feeling good before I saw him. Now my mental state is so depleted. What can I do? I see in his reviews online that others have had similar experiences. I need to keep on this regime he prescribed, but his manner is so caustic. I don't know if I can go through this every month with him. I feel it affected my health negatively seeing him. Doesn't hope count for something?

Comments

  • Kandy
    Kandy Member Posts: 1,461
    edited October 2017

    I am so sorry that he was like that to you, I do agree that would have a negative response on your physical and mental wellness. He is not God and has no idea how things will go for you. There are plenty of women that live years after they are diagnosed. All it takes is for you to have a positive response to a drug. I think if it was me, I would definitely find another Dr, even if I had to drive to another city, there is no way I would listen to that again. I wish you the best. Prayers and thoughts are with you.

  • MarilynIllinois
    MarilynIllinois Member Posts: 79
    edited October 2017

    Likesquirrels, I'm sorry this doctor spoke like that to you.

    Yes, I agree, hope does count!

    If you see him again, could you bring a friend or family member with you to your appointment? Do you have a favorite nurse at the hospital? Could you ask if a nurse or medical assistant be present at your appointment?

    Could you speak to your surgeon or primary care doctor? Maybe he/she could recommend someone else.

    Best wishes to you

  • Snowfall
    Snowfall Member Posts: 90
    edited October 2017

    If changing doctors doesn't seem possible for you, maybe you could talk to him about his negativity. Does he think you don't understand the seriousness of your diagnosis? Maybe he feels his whole job is as a problem solver focused on the negatives, and things he's leaving the positives of to you.

    In any case, it might help to tell him that you find his negativity destructive of your well-being and ask whether he thinks he could acknowledge the positive, too. Maybe he was just having a bad day, or maybe he doesn't realize the effect he has.

  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited October 2017

    likesquirrels,

    I had an appt like that with my radiation doctor. I was with my husband and we were both so shaken and scared when we left the doctors office that we went somewhere to pray. I had to drive an extra 1/2 hour in traffic to go to another doctor but I couldn't be around toxic negativity while I'm fighting for my life. Thank God I had a brilliant surgeon who talked to us for a half hour about Ibrance and other treatments afterward, hope and enjoying life. It relieved my fear and fortified us for what lies ahead. If you cannot get another doctor than talk with him about how he made you feel and allow him to apologize it's so important for you to feel good about your treatment.


    Support,

    Tanya

  • 50sgirl
    50sgirl Member Posts: 2,527
    edited October 2017

    Likesquirrels, I am sorry you were subjected to that doctor's insensitive, unnecessary, inappropriate words and attitude. Yes, hope does count in so many ways. Without hope, where would we be, with or without our disease? People plan their futures on hope. They base their dreams and goals on hope. Negativity has no place in our medical teams' words. We are all aware of the fact that there is currently no cure for mbc, but we are also well aware of the fact that there are many treatments available. Many of us will live for years, some for decades. There are more treatments coming. I think that it is unhealthy for you to continue to see a doctor who has such a serious impact on your well-being and mental health. Unless he is willing to change, and since the reviews indicate that this is his usual manner he probably won't change, it seems to be in your best interest to find someone else. How far would you have to travel to see another qualified oncologist? If you must stay with him, contact the nurse navigator or the office manager and tell them how you feel. Let them know what he said, how he said it, how it made you feel, and how it affected you for the days following the appointment. Bring up the reviews that you read. Ask them if they can suggest a solution to the issue. I really hope that you can move on to another doctor, but if not, then the toxic attitude of that onc needs to change, not just for your sake but for others who see him as well. Why in heaven's name did that man choose to be an oncologist if he has no heart or no idea of the impact of his words? In the meantime, look to this forum for support. The people here know the truth and the possibilities and are willing to give you all the support you need.

    Hugs and prayers from, Lynne


  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2017

    Likesquirrels, you are not dying. You said you feel good. You are LIVING. Living with cancer. Toxic people have no place in your precious life.

  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited October 2017

    Thank you all for your responses. I see many of you have similar diagnoses as me. I have actually not found a forum where I felt there were kindred spirits. Thank you so much for your kind words and for helping me work through this.

    You know he just really scared me so much. I just kept thinking his attitude meant I had started to reject the Ibrance, like he just wasn't telling me something. He is unreachable by phone and never discusses the test results with you either. There is a website where you can review test results, but for God's sake, that and 2 cents in an uninformed patient can really leave you shaken. So, I don't technically know anything specific about how I am doing on the meds other than that I do feel good now and I attribute that to the Ibrance and Letrozole.

    I will take someone with me next time. I have seen him 3 times. The first was to discuss treatment which lasted about 45 minutes. The person who came with me asked how he thought I got this and he said, "Well, just bad luck I guess".

    I guess if one is subject to "bad days" then one should find another profession, because people like myself who walk on pins and needles everyday, have potential bad days everyday and we don't need to be brought down any further. We carry a heavy load everyday. It has truly taken me two days to begin the road back to where I was before my appointment.

    I probably won't confront him about his attitude, because I feel I am in a precarious position with him basically being what looks to me to be the head of this division, over other physicians in this specific discipline. This is a major medical facility in my area. I may ask someone at the private hospital in my town if they have any referrals, I don't know. I just can't jeopardize this treatment that seems to be working so well. Isn't that terrible and scary? What if he decided to take me off Ibrance? I just am so scared at this point of any changes in my body and test results.

    Anyway, thank you all so much and I appreciate any and all advice. Wishing you all the best in your continuing health and wellness goals. Thank you!!


  • bigbhome
    bigbhome Member Posts: 840
    edited October 2017

    Likesquirrels, If you are uncomfortable with your MO, it is probably wise to seek another oncologist. He sounds terrible. I drive 1 hour each way to see my Mo, that is without traffic. With traffic it can be up to 2 hours each way. He is so worth it! We never discuss the end...his job is to give me the best quality of life, quantity is secondary. I pass lots of other MO offices on my way to his. You don't need this negativity.

    Hugs and prayers,

    Claudia

  • HLB
    HLB Member Posts: 1,760
    edited October 2017

    He is not the only Dr able to prescribe ibrance. You need another onc imo. I know how you feel, I think, because I could be feeling great and on top of the world and then see the onc and the rest of the day is garbage. Not realy anything specific, just the seriousness and some people are so dour when the talk to you. I end up thinking am I crazy? Is this worse than I thought and I'm kidding myself?? They make me doubt myself sometimes. I have noticed that now that I'm 5 years into Mets, I am not nearly as sensitive anymore. people can talk worst case scenarios and it doesn't have any effect on me anymore for some reason. Maybe I just got used to it. Either way, it's important to have a mutually good relationship with your onc, and he is not good for you when he has this effect, especially when it takes a few days to get it together again.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    likes squirrels,


    When you have MBC, you and your mo establish a long term relationship. You need a far better relationship than the one you've outlined here. If you are at a major medical facility, this guy is not the only game in town. I have been living with MBC for a bit over six years (living, not dying!). When I was first dx'ed, I saw an mo who was head of the oncology dept. He was knowledgeable, but I didn't like his attitude and stand offish manner. My RO recommended someone else at the same facility. Wow! It was a whole new world. Knowing that this would be a long term relationship, I would have traveled ,if necessary, to find someone who not only had the medical expertise, but who was a positive force in my care.
    Run as fast as you can and don't give him a second thought. Ibrance is in common use and any mo can prescribe it. You deserve much better.
  • Beverly11
    Beverly11 Member Posts: 443
    edited October 2017

    You ladies as always amaze me with your compassion and wisdom to all. I read likesquirrels experience earlier today and I am just finally responding. How you ladies always reach out to all who are in need is a very special blessing to all.

    likesquirrels - I have found the medical system to be a glass half empty kind of a place many times as well. They often seem to very reluctant to give us anything positive and sometimes I wonder if it is possibly for legal reasons. Or do they just get broken and cold? Firstly, I think they should be telling you more how they think you are doing based on your blood work results and future scanning. Regular scans can give them a lot of information combined with blood work and how you are feeling.

    There is one lady on bc.org that is a 10 year survivor that posted on bc.org to inspire many of us. We can do many other things in our life styles to help us in addition to medication. And, the better we feel the more likely we will and are able to do. ie exercise, healthy eating, supplements, complementary treatments. I would suggest counselling or supportive treatment through any means you are comfortable and have access to. (pastor, friends, psychologist etc) I found blogging about my experience has helped. beverlymartinwpg.blogspot.ca

    Treat yourself well and believe the treatment is working.

    Praying for continued healing and joy.

  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited October 2017

    the first doctor I met with after my stage 4 diagnosis (right out of the gate, mind you) told me there was nothing that could be done, and she was sorry. Fast forward 7 years out and I have been NED up until about 3 months ago- after finding a new doctor. Don’t let anyone discourage you! No one know the outcome except God and I prefer to think positively. Hang i there and find a doc that is pulling for your success

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2017

    So, since you are at a large facility, there must be other medical oncologists there you can see. You might try quietly asking the nurses who they recommend as a smart and kind oncologist, and if there is a local in-person support group those people could possibly give you some names. Also ask the hospital social workers, and any doctor you have seen who is caring and communicative. The neutral phrase to help you avoid seeming critical, is "a good match for me".

  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited October 2017

    Thank you all for the advice, I did make the change today. I will begin seeing another doctor next month. Some very caring patient advocates helped me to initiate this process.

    Shetland, I used your suggestion to begin the conversation with, "is a good match for me".

    Your encouragement and advice, everyone, helped me to make this change. I never could have done it without you.

    Strangely, I am still not back to where I was mentally before this appointment, but I can't force that and I won't try. I know it took me a lot of thought and strength to get there and now I just need to take the time in each moment to climb that hill again. I feel like such a weakling in this respect, but then again I am not trying to be superwoman. I just want to try to come to some agreement with myself on this bad situation.

    Where do you all suggest I find help on this website? Where do new posts from others usually appear? Do you write on the other forums much? I just don't want to miss any good items that others are writing or that either I can help someone else or get more advice and companionship with.

    Friends, thank you all. This has made a big difference in my life.


  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2017

    Likesquirrels, well-done, making that change today. And well-done for being kind to yourself, and for reaching out for support, as you adjust to this diagnosis. I hope you will always feel supported here.

    As far as where to read and post, I'd suggest joining the thread for your current treatment, Ibrance, and the thread(s) for your mets location(s). Two other threads that might offer you encouragement as a "newbie" are "Life does not end with a stage iv diagnosis" and "Tips for fighting the dark clouds" (Just skip over any sections that stray off topic or are not helpful). You might want to click on "All Topics" at the left, then scroll down and click on "Stage IV and Metastatic Breast Cancer Only" to browse. I visit other forums all the time, but my home base is with the other stage iv people. Also, you might want to look at threads for any particular interests (for stage iv or for all stages) such as fitness, de-cluttering, cats, etc. You will find the threads you want to mark as favorites and keep up with. If you feel comfortable filling in and making public your diagnosis and treatment info whether by checking the boxes or doing it "freehand" that will help others know better how to be helpful and what they can ask your advice about.

    If you would like any links to click on in order to locate particular threads, please let me know and I will put them here. Here is the Ibrance thread to start:

    https://community.breastcancer.org/forum/8/topics/...



  • HLB
    HLB Member Posts: 1,760
    edited October 2017

    I'm so glad you made this positive change! Things will get better. Just give it some time. It's so hard in the beginning. I have found denial to be very helpful in living a happy life, and I am going to be in denial for the next 30 years! ibrance is a great treatment imo.

  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited October 2017

    Thank you Shetland. The dark clouds one sounds right up my alley. Cats? Makes me curious. I will go out and take a look at these forums.

    HLB: I was doing a pretty good job of denial until that appointment this past week, going to try to get back on that wagon. Been feeling pretty down, working on that. The Ibrance has been a miracle for me. Just ending my second cycle today. I get so scared that my blood tests will be bad and I would have to go off it. I guess after that appointment I was made to feel scared, sad, stupid and unimportant and now I need to forget that and pull myself back up.

    All we get is this moment and physically I have to remember that I feel a thousand times better than I have in the last year or so. That is all that matters.

    Have a good weekend.



  • pajim
    pajim Member Posts: 2,785
    edited October 2017

    Likesquirrel, do not feel that you have to be on top of the world all the time or at any time. It's only been three months since your world turned upside-down. Not to mention the major issue of not having a supportive doctor.

    Be kind to yourself. Things will get better. it may take a while.

    Someone once described getting a diagnosis like this as a kind of death. What happens is that you have a sense of what your future is going to be. Even though it can be misty. But then all of a sudden that future is no more. You need to grieve it, and then build a new sense of future for yourself. That takes time. It's akin to having a spouse die unexpectedly.

    Well-done on finding yourself a new MO. I hope the new person turns out to be just whom you need.

  • HLB
    HLB Member Posts: 1,760
    edited October 2017

    Pajim that is so true. It is grief for the end of being healthy with no medical problems! In the begining my onc said "you will come to grips with it and be ok". It pissed me off at the time but it was true.

    Suirrell, I tok ibrance for 16 months at the full dose and never my counts go low. I think maybe I'm unusual with that, but even when people go down to 75 the drug still works. When you get the evidence that it is working it makes a big difference in your mood! Plus the new onc and things will get better and better. It sucks when you get yourself to a good mental place and then the Dr knocks you right back down. I just tell myself nothing has changed in one day but it takes a lot playing mind games with yourself. Fortunately they don't have that effect on me anymore.

  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited October 2017

    I have been cursed or blessed with an overactive Virgo analytical mind. It's always on "go". I guess the brain is a funny thing. What I am forgetting is how horrible I felt before I took Letrozole and Ibrance. I need to remember how much better I do actually feel now in comparison.

    Another thing my brain tells me is, we all are always comparing ourselves to each other. But no one said we were all going to live into our 70, 80, or 90's. Some of us do, true. More of us do than used to. It is not set in stone though by any means.

    I guess accepting or considering that I am just not going to be one of them is a mindset I can work on. A lot of people pass away in their late 50 or early 60's. I just need to accept that my time will be sooner than later. Somehow that kind of helps me. We aren't all long lifers.

  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited November 2017

    I just wanted to update you all and give a huge thanks to you for supporting me and advising me to request another doctor. Today I met my new doctor for the first time and he was everything I hoped he would be. Caring, informative, and supportive. He took time with me and explained things, we had a very nice talk. I owe all of this to the members of BC.org who replied with love and care.

    THANK YOU!!! This has made a big difference in my life.

  • Tina2
    Tina2 Member Posts: 2,943
    edited November 2017

    Wonderful! I am so happy for you!

    Tina

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2017

    Excellent, Likessquirrels. Thank you for letting us know.

    Pajim, that is such an accurate description of what it is like to get this diagonosis.

  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited November 2017

    Thanks Tina! How are things going?

    Thank you too Shetland!

  • pajim
    pajim Member Posts: 2,785
    edited November 2017

    Woo Hoo!! So happy you found a doctor you like. And don't hesitate to ask him for whatever you need.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2017

    Very happy for you. The right mo can make all the difference!

  • Annie70
    Annie70 Member Posts: 19
    edited November 2017

    pajim, thank you for the description of getting this diagnosis as a kind of death. That is the most accurate description I have heard and helps me make more sense of these last 10 months.

    Likessquirrels, it takes courage to make changes. You have it. I rarely post but have read much on this forum. The ladies here have an overwhelming amount of courage, sympathy and knowledge.


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