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Playing the cancer odds

Posted in Health

Abbey St. FoyOn Thursday morning, halfway through my volunteering shift, on a whim, I crossed the street outside the hospital and walked into my oncologist’s office, to pick a copy of my onco type dx test. I folded it into four, stuck it into my pocket and retraced my steps to the hospital. Sitting on a bench in the glass and steel lobby, I unfolded the paper, smoothed it and stared at it for a long time.

Less than 48 hours before, the oncologist had called me with the results. When I saw her name appear on the phone screen, I sat down on the couch, the light outside the windows giving way to darkness in the late afternoon.

The onco type dx is a test that, for certain tumours, can predict, with 95% accuracy, a possible recurrence within five years, and whether chemotherapy can be an effective preventive measure.
“Your overall score is 19” she said “which translates to a 26 to 28% recidivism chance. You know what that means. I recommend chemo.”

I was too shocked to ask any immediate questions – I was home alone and I told her I had to sleep on it, talk it over with my family and would get back to her within a day. Considering the size, grade and stage of my cancer, I had expected a much lower figure. All of a sudden, I felt I was sitting at a blackjack table in Vegas, calculating the odds, trying to game the house. At the same time, for the first time, I hit the cancer wall. I didn’t want to know anything anymore, no more facts or figures – I wanted it all to go away and to stop forcing me into decisions. I began blabbering that I didn’t care anymore what tests said, that it was time I resumed my life and everyone had to leave me alone.

Nonetheless, I prepared a list of questions for the oncologist: every fiber of my body was telling me there was no way I would consider chemo but how should I balance my instincts with medical knowledge? I barely slept that night, with figures swimming in my subconscious, taking long and relentless laps.

The worst thing of this ordeal, worse than fear, shock and confusion, has been the in-taking of new information, the sorting, the learning, and applying all of that to the decisions I was asked to make. It is mentally exhausting, and I understand those patients who abdicate all the decision-making to their physicians. Unfortunately, I am unable to do that.

My oncologist happened to be sick the following day and I wasn’t able to speak to her. Which is partly why, on a whim, I decided I wanted to see the test. On two mere pieces of paper, there were the figures and statistics she mentioned. But, right next to them, was something else, in rather big block letters: the test had been conducted on an estrogen positive tumor, with the assumption of 4 or more positive lymph nodes. Say what? I re-read the sentence three or four times, looking for a different outcome. I checked the name and date of birth matched my own. They did. I could have run down to my surgeon’s office, or to my radiation oncologist and asked for help in reading it. I was, after all, surrounded by doctors, but I didn’t. I just resumed my duties, the paper folded in my pocket. Maybe I didn’t want to burst the hope bubble: the test was wrong. None of my lymph nodes had tested positive.

doctor jokeOnce home, I showed it to my husband. His first words “There is a mistake.”
I still waited two hours before calling the oncologist, whose first reaction was there was nothing wrong with the test.
“Please look at it.”
Fingers fumbling on the keyboard. Silence.
“Well, yes.” She didn’t quite know what to say.
“How would negative nodes affect the results?” I prodded.
It turns out they would slash my percentage in half. But she is not conceding her recommendation would differ, she offers no apology. The tone of her voice could have made you think she was discussing the fucking weather.
I am not sure how I controlled the rage, how I didn’t throw the implications in her face. I asked how this could have happened. Did someone check the wrong box? Was it the lab? Who physically filled out the paperwork? She does not reply to any of my questions, other than saying that she is going to have her staff call the lab. And that was that.

I sat for a long moment, phone in hand. What if I had agreed to unnecessary treatment, no questions asked? What if I had declined the treatment and had to adjust to life with that percentage? What if my curiosity had taken a hike that day?
To make matters worse, I subsequently found out that, had my score been a 19, there are no clear studies I would have benefitted from chemo. It was a gray area and doctors are asked to rely on their experience, other tumor markers and a patient’s preference. None of this was shared with me.

A medical degree does not confer infallibility. Mistakes happen. Often. That I had to be the one to catch this particular one is bad enough. Still, I tend to be forgiving. But that I was offered no empathy, no respect for my trauma, that, I cannot let go of. I don’t expect doctors to put themselves into patients’s shoes, or they would go mad after a year of practice. But I do expect them to be present and respectful of my disease: it might be a boring, stage 1, routine breast cancer but it is mine. With the shock, the trauma, the emotional upheaval and the fears that come with it.

Needless to say, I am looking for a new oncologist.

Top image: Abbey Ste Foy, Conques – via Eddie C.

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31 Comments

  1. I go for a mammogram tomorrow morning. I used to be so cavalier about it, sometimes not getting one for several years. But, I have several acquaintances who have been diagnosed in their 70s. So off I go tomorrow. I think your blog has raised my awareness and the importance of mammograms, not withstanding my friend’s experiences. I’m sorry your experience with your oncologist was so disappointing. I think they get so used to delivering the news and the course of treatment, they don’t really see us as “people”. Yet to us, we want to be treated as though we are their “only” patient. Keep your chin up!

    March 2, 2016
    |Reply
    • camparigirl
      camparigirl

      Your mammogram is done at this point and I hope they gave you the results immediately. I am over waiting for test results!
      It’s true, we want to feel as our relationships with our doctors are somewhat exclusive – still, there is a huge line between lack of empathy and communcation and the care that so many other doctors I have encountered on this journey have displayed. I have now found a wonderful new oncologist and I just finished a “break-up letter” for the original one.

      March 3, 2016
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  2. oh. my. god.
    My admiration to you and your decisive husband because I imagine I might not have had the wherewithal to see clearly And then what?! This is the kind of thing we are seeing with the deterioration of the NHS in the UK but with the amount of money that health care costs in this country I am appalled. On the other hand, no one would be too quick to apologize here in case it was admitting liability and you sued.
    Hope you are scheduling a spa day this weekend…

    January 28, 2016
    |Reply
    • camparigirl
      camparigirl

      I just started radiation therapy today and, although it’s just an in and out quick thing, it’s every day, Mon to Fri, which makes me feel chained to the bloody hospital! I am planning a short trip as soon as I am done. Can’t be in the sun for quite some time so am thinking Savannah, GA. Or something intriguing like that – where they also have spas…

      January 28, 2016
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  3. Good decision to change your oncologist. Also because she doesn’t seem to learn from her mistakes. So glad you don’t need chemo.

    January 27, 2016
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    • camparigirl
      camparigirl

      Cue huge sigh of relief!

      January 28, 2016
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  4. Luciana Chapman
    Luciana Chapman

    Per fortuna sei curiosa! Che errore tremendo! vedrai che un oncologo migliore lo troverai in fretta!

    January 26, 2016
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    • camparigirl
      camparigirl

      Grazie Luci!

      January 26, 2016
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  5. I can’t stop crying! No words can describe the disdain I feel for what you suffered.

    January 26, 2016
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    • camparigirl
      camparigirl

      Thank you Giulia! But now cheer up…I have.

      January 26, 2016
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  6. Being the Curious George type can keep you awake at night for sure, but it’s times like these that makes it all worthwhile. I can’t think of a better situation to be knowledgeable and able to ask for an explanation. The fact that this doctor is unable to keep her pride and ego away from her practice and, after such a blunder, is still unable to apologise, makes her a bad professional, and one to avoid at all costs! Glad you’re changing to another oncologist – and will you tell this one why? (I would.)
    Very, very happy you’re on the low percentile for recidivism! Now please go have a drink and toast to your intelligence, your curious nature, and how wonderful it will be to tell a bad doctor to f**k off from your life 🙂

    January 26, 2016
    |Reply
    • camparigirl
      camparigirl

      Yes, I will definitely tell her, once all is said and done. I really need to. For her benefit too, I think.

      January 26, 2016
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      • Good luck with that. Somehow I’m not expecting her to actually listen. But you are right to try of course.

        January 27, 2016
        |Reply
  7. Ellie Toffolo
    Ellie Toffolo

    Claudia – I’m so shocked – the sense of injustice and carelessness or ‘couldn’t care-lessness’ drives me mad – especially when I realize we were probably more precision-conscious about promo schedules!!! Publishers and translators have proofreaders – surely doctors and lab technicians should too.
    But I am so so glad it was a mistake in your favour.

    January 26, 2016
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    • camparigirl
      camparigirl

      Oh Lord! Those promo schedules, which would change hourly! Aren’t you glad we are not poring over them anymore??

      January 26, 2016
      |Reply
  8. I am so glad you questioned the results. Doctors always ere on the side of caution these days. I wish you the very best for the future.

    January 26, 2016
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    • camparigirl
      camparigirl

      I know doctors whant to you give you as much ammo as they can, so there are no recriminations down the line, but I think they all need to be discussed profusely with a patient, who has expressed such an interest. Thank you for your wishes!

      January 26, 2016
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  9. So glad that you are the “Curious George” type as well. Well spotted – it pays to be attentive, vigilant and to query everything!

    January 26, 2016
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    • camparigirl
      camparigirl

      As it so happens, I have a real curious George, made of socks, sitting in my office, staring at me!

      January 26, 2016
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  10. I am relieved by the test actual score, so glad that everything’s look good! And, of course, appalled by the rest. It must be really frustrating and like you don’t feel you can trust your own doctor but focus on the fact that the worst part is behind you now. I think of you all the time, brave Claudia. xx

    January 26, 2016
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    • camparigirl
      camparigirl

      Thank you E! I really appreciate it. Not sure about being brave – just trying to get through this as best I can.

      January 26, 2016
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  11. Wow. This is awful, just awful. It’s so hard to be in control and understand so much when going through such and experience; I admire your perseverance. You know I always wish you the best. Will write more privately…

    January 26, 2016
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    • camparigirl
      camparigirl

      Got your email. Hope you are back on your feet. Look forward to chatting.

      January 26, 2016
      |Reply
  12. Wow….it always pays to trust your gut instinct. I’m so sorry you had to go through that but good for you for being your own best medical advocate.

    January 26, 2016
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    • camparigirl
      camparigirl

      If I had any doubts before….mighty glad my instincts guided me and I chose to listen.

      January 26, 2016
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  13. In 1954;my mother found a lump on her breast…the doctor a older wise man…said it was nothing … She ignored it. In 1959 the doctor died …..and my mother went to our family GP who did a radical mastectomy the next day….she died in 1964 at age 50…..don’t wait …please question…your life depends upon it.

    January 26, 2016
    |Reply
    • camparigirl
      camparigirl

      Thank you B! Sad story. Times have changed but medical errors still occur. I have been extremely fortunate with some amazing doctors: the radiologist who found it, the surgeon who didn’t leave any visible scars, the radiation oncologist who insomnia the most amazing women I have ever met. Guess I was due for some bad luck. And I am happy I am the curious George type of patient.

      January 26, 2016
      |Reply
  14. winston moreton
    winston moreton

    My subconscious laps would have been restless too. Great writing and good on your husb. confirming your analysis straight off. Did you get yet to read the novella “I giorni dell’abbandono”? – if not email me your postal address and I will send.

    January 25, 2016
    |Reply
    • camparigirl
      camparigirl

      I haven’t yet but my friend Silvia m, who came to visit over the holidays, brought me a bunch of tomes, among which I giorni too. On my reading list. Thank you for the offer! (I have been side-tracked by my fourth re-reading of War and Peace

      January 26, 2016
      |Reply
      • winston moreton
        winston moreton

        War and Peace – so many translations – and is it as good as modern latter-day lit. by women? In NZ we are having the euthanasia debate at parliament level and my apolitical wife, who disavowed the electronic medium until her last birthday (kids gave her an iPad), has just made an electronic submission to the parliamentary select committee after reading this article. http://www.stuff.co.nz/national/health/76229745/euthanasia-debate-jayne-malcolms-story-the-flip-side-of-assisted-death . Hope you don’t mind me sharing but the coincidence and a short whisky compels me thus.

        January 26, 2016
        |Reply
    • camparigirl
      camparigirl

      I don’t mind at all. Interestingly enough, California just went through this debate and, a couple of months ago, our Governor signed into a law a bill that allows for assisted suicide. I have alway been in favor of it but the issue is not so black and white, as the link you sent me illustrates. A few years ago I wrote this – http://campariandsofa.com/2013/06/09/euthanasia/ – after reading an interesting ope-ed by Ben Mattlin in the New York Times. It didn’t change my opinion that euthanasia should be allowed but it did give me a lot of pause. You might want to show it to your wife. Also, a good friend is on the medical board that regulates assisted suicide in Oregon and they are trying to come up with a cocktail of drugs that works faster. I didn’t realize that, after the barbiturates are ingested, it can take up to 4 days for a patient to die, a very harrowing experience for a family. I briefly corresponded privately with Ben Mattlin and his case gives a different perspective I hadn’t considered before.

      January 26, 2016
      |Reply

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