504158EF91EAA8A27A35DB2FC810D5BC

Whose Cancer Is It, Anyway?

I recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities” She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.

If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true. But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.

25090487_sFirst of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.

The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.

A couple of years ago I wrote about being bullied.  I wrote about how after almost half a century the memory of being bullied as a child can still bring tears to my eyes. But, as I keep repeating: feelings are not the boss of me! It is time for me to sit with the very uncomfortable, painful feelings of being bullied so that I can move through them and release myself from their pernicious hold.

Dr. G was unprofessional, rude and mean to mock me. But it was the jeering of that girl gang in 1967 that held me back from responding as a mature adult. It was those little girls who had me backed into the corner of a school lavatory who made me apologize to Dr. G for her own bad behavior.

Well then. The problem is defined now and I know what I need to do to resolve it. It won’t be fun and it won’t be pretty, but at the end of the process I will have made significant progress toward being whole, being free, and being at peace with my past and my present.

Image credit: innovatedcaptures / 123RF Stock Photo
Used with permission.

 

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29 Responses

  1. Paula Sanders says:

    I read the blog you’re talking about Knot and I think she is right on. That’s why I don’t tell patients they need to quit smoking. They already know that. I tell them it would be good if they could cut back some on their smoking. This is much more realistic for them. And what if you were you’re child in this situation? You know what you would do without a doubt, don’t you?

  2. Susan Zager says:

    Knot you might print out the article from the doctor as well as another great article by Dr Don Dizon, http://connection.asco.org/Commentary/Article/id/3815/Beliefs-Attitudes-and-Evidence.aspx
    where he really explains about listening to his patient. I think that either you go back to the oncologist and bring these articles or go to another and get what you need. There’s no reason for this oncologist to be keeping you from getting what you need. This is all about you and you deserve whatever treatment or tests that you want or don’t want. Love and Hugs – Susan

  3. Carolyn says:

    She certainly had no right to force any treatment on you that you don’t want. I thought it a normal doctor / patient relationship to come to a mutual decision regarding the treatments and the course we wish to follow. I realize through your experience how fortunate I have been. I’m sad that she has caused you continued anguish. But very pleased you have decided to talk about it, whittle it down and hopefully move on. I truly hope you talk to a new oncologist, you need a base, someone with whom you feel comfortable to bring all of your concerns without fearing further disrespect. To mock you, inexcusable. Much love, dear friend…

  4. Ellana says:

    I left an oncologist, the who practice, because they bullied me. I never put a name on it until now. Fortunately I live in a large city with other choices. Still, looking back, I feel proud of myself for not acceding to the treatment they were sure I needed. They even enlisted my surgeon and radiation oncologist in their assault on me. They were wrong in their recommendations, very wrong. Thanks for writing this.

    • Knot Telling says:

      Good on you, Ellana! Bullying comes in all sorts of clothing, including white coats. I’m glad you have other choices.

  5. Kathi says:

    Knot, this is such an amazingly important issue for so many of us. Doctors and clinicians are not in charge of us, we are in charge of us. As a clinician myself, I have been very happy that there has been movement at my homecare agency in the past year to get us all to encourage patients to tell us what they want from us, what goals they want to achieve, not for us to tell them what they ‘should’ do or what goals they ‘should’ achieve. We have all been trained to adhere to the tyranny of outcomes, but if those outcomes are not defined by patients themselves, they are meaningless. There is no point in forcing treatment on someone who doesn’t want it.

    Recently, I saw a patient who’d been assessed by another PT. Her goals had been defined in terms of how she walked. When I talked with her, she told me she was walking about as well as she usually did, which she admitted was not great, but was her usual baseline, and that realistically, she was happy with that. Meanwhile, what was really bothering her was her frequent urinary tract infections & the resulting urinary urgency, frequency & poor control. That’s what she wanted to work on. So, we did. I taught her how to strengthen her pelvic floor and bladder muscles. She practiced her exercises faithfully, and they worked! Within a few weeks, she was able to sleep through the night without having to get up to urinate, and she was no longer dribbling before she got to the toilet. And not coincidentally, because she slept better & felt more confident, her walking improved. THAT was a good outcome.

    • Knot Telling says:

      Excellent outcome from a sensitive clinician!

      Speaking of those pelvic floor exercises? You might want to post about those. Asking for a friend.

    • Catherine says:

      What a brilliant story, Kathi. I’m so glad you listened and helped that women. What a difference it must have made in her life.

  6. Caroline says:

    Any doctor who calls you at home to argue with you about your decision should have their medical license reviewed. I know about the Hippocratic oath and all that but what about the patient and their decisions? Whatever your decisions, find a new oncologist so you never get referred back to the ‘idiot’ – just so you have one on file. Big hugs to you.

  7. oh, Knot,

    I am so glad you have decided to do whatever you feel needs to be done. you deserve to be free, to be at peace, and be whole again. Bullies are really cowards who take on the guise of cruelty and torment. no physician should be allowed to wield such power over their patients.

    I am glad you played that game where the bullies acted out if it helped crystallize your resolve to know what you have to do. but I am so sorry for all the years you have had to bear the scars from such dreadful treatment, both when you were a little girl, and a vulnerable patient of dr. cruella. and good for you for calling those bastards out!

    love, XOXO

    Karen

  8. maesprose says:

    Knot I feel for you. I was bullied by a nurse and begged my sister to come to the next appointment with me. It turns out the nurse was out of line but I’ll never forget that feeling. She had me believing I would be dead if I didn’t do as she said. If I could, I’d stand behind you during that meeting.

    • Knot Telling says:

      Thanks a billion, maesprose. It’s an awful feeling; you were very wise to bring your sister with you.

  9. Oh my gosh, how horrible. It’s really inexcusable that any doctor would behave in such a way. I’m very sorry you had to experience all this. It really boils down to that doctor having a lack of respect for her patient, a lack of respect for YOU! Again, deplorable behavior. So, now I’m curious, what are you going to do? xxxx

    • Knot Telling says:

      I never had a wonderful relationship with her, but this was a shock.
      For now, I’m not doing anything. Judging by the intensity and location of the pain, the cancer is mostly stable right now. My GP keeps me in pain meds and all that. On the other hand, writing this post was the start of healing, and I expect I’ll start looking for a new onco at some point.

  10. Catherine says:

    I’m sending you vibes of support, because it ain’t easy to challenge that kind of situation. Just you sharing it is a big thing. May I say that it’s also supported me in asking for what I want from my oncologist, and I’m going to kick up the courage to do that.

    No one should be bullied. And for sure what she did was plain wrong. It’s your life and your choice. I hope you find yourself a doctor who will listen and work with you with what you want. So, vibes of support coming your way. (And thank you, too)

    • Knot Telling says:

      Thank you for the support, Catherine. No, it is not easy to challenge a bully, especially one in a white coat. If reading this was strengthening or encouraging for you, I am very, very glad.

      Thank you so much for your support.

  11. Maxine D says:

    I am still dumbfounded by the treatment you have received at the hands of professionals – both at your diagnosis and later regarding treatment !!
    I am so glad you have come to a point of wanting to confront the situation and person. I hope you have a support person with you when you do, as it will not be easy.
    {{{{Hugs}}}}
    Prayers and blessings
    Maxine

  12. I am so sorry to hear of this distressing experience. It was inexcusable and it makes me so angry to hear of this abuse of power, which sadly is not an isolated experience.

    • Knot Telling says:

      Sadly, you’re quite right, Marie. This is all too common. Thank you for including the post in your Round Up!

  13. Elizabeth J. says:

    This is just awful. Unfortunately there are some doctors who are just that, bullies.
    My oncologist is certainly not, but I have dealt with other doctors who were bullies, plus one male chauvinist specialist.
    The male chauvinist, assigned by the hospital after my dad had strokes, was actually the easiest to deal with. Every question was answered with “when is your brother getting here?” I finally handed him my pink cell phone, said push that button, but if he was coming, he would be here. He handed the phone back and finally started to talk to me. Even made sure I got power of attorney.
    As for the ones who were just bullies, I left them in the dust and found someone new. In each case, the new doctor confirmed my instincts were right, that the diagnosis really was off or there was a better treatment.
    Knot, find yourself a new oncologist, please. One who will respect you and your choices. There may be things he/she can do for symptom relief besides just pain meds. Not talking more treatment, just symptom relief.
    You will be in my prayers. God bless you.

    • Knot Telling says:

      Thank you for writing, Elizabeth, and for sharing how you handled the sexist doc. You’re a good example!

  1. 13 April, 2014

    […] is distressing to read Knot Telling’s experience of being failed by her doctor. I wish I could say this is an isolated case, but sadly it […]

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