Annoyed

Since my diagnosis, my female family members have been more vigilant about doing all those things we knew we should’ve been doing before. The mammograms, the self-exams, the generally looking out for “it”. We were doing some of that – but certainly not with the full attention, as regularly or carefully as we do now.

One of them (we’ll call her “FF” for “female family member”) recently saw the supposed “best BC oncologist in the state”. The Dr. looked at FF’s films carefully, was told about me, and gave her recommendations. Although FF’s films are clean and she has agreed to screening by MRI as well as mammograms, each at 6 month intervals, the Dr. immediately recommended ovary removal (oompherectomy) and/or bilateral prophylactic mastectomies. FF pointed out that I had gene testing and the results were negative. And do you know what Dr. Lady said?

“Oh. Well, you said she got it done in Belgium or the Netherlands or something? They don’t have very good care over there. You should completely disregard that test.” (paraphrase)

I’m so unimpressed (to say the least). I don’t need anyone in particular to think I had the best care ever, nor do a I have the least problem with recommending a second test/opinion. (They are not infallable tests I realize, the reason being why I continued with my 2nd mastectomy.) But I find her attitude inappropriate on several levels. For one of our nation’s “experts”, she sound completely ignorant. If this lady is at the professional level she is purported to be, than she should be well-informed.

For one, she should be at least well-informed enough to know who her contemporaries are. Belgium is one of the best places in the world to be for medical care, particularly known for BC. (For example, it is Belgium that is pioneering the fertility saving/restoring treatment of freezing ovarian tissue for later re-implanting. See here and here.) But she appears to be dispensing drastic medical measures with complete disregard to contrary evidence.

Either this doctor has earned a reputation she doesn’t deserve or she is petty enough to allow her own need to feel superior to interfere with her professional approach (I’m not sure which I prefer, or how much of a difference there is).

It’s not just my personal experience speaking out here. If you recall, doctors in NYC told me in the beginning to “stay where you are”, when friends spoke to them about whether I should return to the US for treatment. Even the US government acknowledges this: when the bird flu scare first came about the US Embassy distributed contingency instructions to it’s foreign-posted employees in the event of an outbreak. Their instructions to Belgium-based employees? “Relax. Stay where you are. Belgium is one of the best places to be in the world in a medical eventuality.”

It’s not really my business, but I don’t want this lady directing the care of FF! I’m not unsupportive if FF decides to take the measures. Not in the least. But I want to feel that the Dr. treats FF like more than an opportunity to hear her own advice, like she recognizes that she is recommending something a little more serious than FF getting her ears pierced.

And I’m disappointed in this “highly respected” representative of America’s medical care which – regardless of it’s coverage faults – is the best in the world. (Dr. Awesome has clearly pointed out that Belgium’s progress would not be possible without the research upon which it is built – research that only America can afford to carry out.) Surely we can do better than this.

Telling my relative to take the most extreme actions possible with her body right away, with blanket disregard to evidence that says otherwise is disturbing to me. I’m not even getting an oompherectomy and I was the one with cancer! The 2nd mastectomy was my choice, encouraged but not pushed….

Am I crazy to be really annoyed?

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5 Comments

Filed under breast cancer, rant

5 responses to “Annoyed

  1. Not at all. I would feel the way you feel. If your genetic testing (no matter where it was done) said that this was not a genetic cancer you have been through then that is enough. Female family members are watched through mammograms and MRI/ultrasounds, etc. To recommend what this doctor did to your FF is incredibly wrong on that level.

    To discredit other countries and their advances and treatments is wrong on a professional level. Most doctors praise what their contemporaries are doing. So does this lady doctor have an ego problem? Sounds like it. Her word is “THE” word and that’s incredibly scary. Most “good” doctors will give their opinion and their advice and even tell you to get a second opinion so that you can be “sure”.

    Hopefully your FF has realized that this is not the best advice she could be getting and is looking for another doctor.

    I think the other part of this that rankles with me is…we’ve been there, done that. We “know”. While doctors are the “experts” at how to treat this disease, how many of them have had it to “know” what we know? And when we hear someone being “dismissive” of what we have done or others have done we are outraged because of where we have been…in the trenches.

  2. You have more than every right to be irked. Even if your genetic test had come out positive that wouldn’t mean that FF also carried the gene. My test is positive as is my mothers. My sister, however, is negative. I cannot believe any doctor would make those recommendations to a patient without first having genetic testing done regardless of family history (or where prior testing may have been done – schmuck!).

  3. Kim

    You are not crazy to be annoyed. I would be, too.

    In addition, I know that here in the US there is only one company that does the genetic test. If it is the same in Europe/Belgium/the Netherlands, then how could the doctor possibly discount the test? That means she doesn’t believe in the test results for ANYONE in Europe/Belgium/the Netherlands, not just for you.

    If FF were my family member, I’d be telling her to find another doctor. And I think it IS your business in that you have some experience with this and she is your family member!

  4. That advice is unbelievable. She needs to run to another oncologist, fast.

  5. Pingback: www.cellulitediary.info » Annoyed

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