RIP Stephanie Spielman, wife of Chris (of OSU/NFL), mother of four, SBE diagnoser at 30 years old

See – these are the stories that I dread, that other women who are unhappy with the new guideline recommendation about breast cancer screening dread.  That, under the new recommendations, a 30 year old woman will either not perform self-breast examinations and therefore have something with which they can go to a doctor and ask for more screening, or that if they ignore the new guidelines (which argue against self-examination) and go ahead and do self exams, that when they then go to their doctors and ask for the screening, the doctor will require some ridiculous threshold before he or she will approve or recommend the screening. And that even then, the woman’s insurance won’t cover it since the guidelines say that it’s imperfect and not recommended for women under 50.

That passivity will be approved and routine.  That women will not trust themselves to know their body, that they will not bother because the system does not want to bother – because the system is so concerned about the harm of anxiety and over-biopsying.

I’ve read the guidelines, the reports and the very carefully worded explanations written by women I trust and admire.

But I am trusting my instinct on this and I am telling you – disapproving of self breast-examination and suggesting that women will have to walk in with such a threshold of concern for what they’re feeling about their body absolutely makes me irate at the thought of what a set back this is for women – for humans, for patients – to be in control of their health.

And the utter disregard for the human toll these illnesses take on everyone around the one diagnosed with the breast cancer.

Anxiety sucks. I’ve been there done that for years with shadows on films and MRIs that required additional testing.  And while I have a “family history” we don’t have the gene.  My Gale score isn’t high enough to get me into most clinical trials.

From the New York Times:

While many women do not think a screening test can be harmful, medical experts say the risks are real. A test can trigger unnecessary further tests, like biopsies, that can create extreme anxiety. And mammograms can find cancers that grow so slowly that they never would be noticed in a woman’s lifetime, resulting in unnecessary treatment.

Over all, the report says, the modest benefit of mammograms — reducing the breast cancer death rate by 15 percent — must be weighed against the harms.

Screening in the 40-49 decade results in a 15% reduction in fatalities? I’ll take that over reducing the harm of anxiety and overbiopsying anyday.

5 thoughts on “RIP Stephanie Spielman, wife of Chris (of OSU/NFL), mother of four, SBE diagnoser at 30 years old

  1. Pingback: SCIENCE GRRL: Does science ever trump human lives? | Girl with Pen

  2. I would not have survived to have had the screening at 50, nor would a fair number of women both with and without “histories” I have met as a former facilitator for the Reach To Recovery program of the ACS. How about weighing false positive anxiety against dead?

  3. I think much of the confusion is in the wording. The point was that *routine* self-exams are not statistically proven to reduce the death rate — but every expert I’ve heard explain this has stressed that it’s important for women to know their bodies and take action whenever something doesn’t seem “normal.”

    In other words, as soon as you feel a lump or notice other changes, you call your doctor pronto. As I understand it, the exams as they’ve been taught are not the end all be all. Women shouldn’t feel guilty if they don’t do a monthly exam — but they absolutely should be empowered to know their body and to act on any changes.

    The problem with mammograms isn’t just that there’s a high degree of false positives (more so in premenopausal women), but that mammograms and biopsies carry health risks and dangers of their own — beyond the anxiety and stress. And unneeded treatments such as surgery or radiation can lead to an increased risk of other cancers and heart disease (this is from Breast Cancer Action).

    The task force’s recommendations are in line with Europe’s and the World Health Organization — both of which recommend *routine* testing starting at age 50.

    There will always be cases that frighten us to the core, but each of us has to weigh the risks and the options (hopefully with the guidance of a good doctor!). For some women, that may mean getting a mammogram once or twice in their 40s and then waiting until their 50s, when the risk is higher, to do so more frequently.

    What all this hopefully brought to light is the need for smarter and safer detection methods.

    Thanks for writing what you did, and sorry for the long response!

  4. Kari – I am so angry over this move. And Stephanie Spielman’s circumstances just put me over. I wish to God that the crappy screening was better but it’s not. I wish that doctors felt more confident in handling the anxiety that the crappy screening causes. But honest to goodness – how do you swap out a 15% reduction in fatalities for “extreme anxiety”? Are they expletive serious?

    Okay – rant over, for now. :) Thanks for reading and commenting.

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