Medical care: the facts, ma’am. Just the facts.
Disclosure. It seems to be alive and well in real estate and the financial sectors. But in the medical arena, I personally find it lacking. What kinds of disclosure, you may ask? The kind that warns you verbally (to your face) of what you might experience without relying on you to discover it all in 5-point font on a medical form. The kind that prepares you when the doctor you spoke with is not the doctor doing the procedure. And the kind that does not dismiss women’s reactions to things as overly-needy or hysteric, since we disproportionately have more health issues to deal with than men over the course of our lifetimes.
Let me explain. I had a bad few months at the end of last year. After several years of great health, consistent workouts, and a feeling I was beating the clock in so many ways, I had a double-whammy — one I spoke about in my Psychology Today blog. Two biopsies (one for skin and one for the breast) in a row that thankfully turned out to be benign, but nothing else about one of them has been since then. The subject here is a breast biopsy after a mammogram showed a nodule in my left breast.
Ever since a doctor went in for 5 tiny samples of breast tissue, which felt fairly harmless at the time, I have been in pain. I was not told that it was possible to have another 4+ months of pain and that that pain would radiate through my breast on a regular basis. In fact, I wasn’t told much of anything. I think getting the relieving news that the nodule was benign was supposed to be enough for me.
I consider myself a pretty strong chick. But not knowing about the possibility of this much pain ahead of time felt like a bait and switch. Would I have refused the biopsy if they had told me about it? Definitely not. But knowing about what MIGHT happen ahead of time may have helped me face it.
My first clue that this was not going to be cakewalk was the doctor switch. On the day I was told about the need for a biopsy, I was introduced to a doctor at the mammography facility. We had a frank talk and by the end of it, I trusted him — almost looking forward to getting this over with because of his measured explanation. He was young, savvy and earned my loyalty. The day of the biopsy, however, I suddenly met an old guy who told he was the one doing the procedure. “We rotate our doctors and this is the doctor on call,” a nurse told me. “If you wanted the doctor you originally spoke with, you would have had to request him.”
And this was told to me — when?
So the biopsy was taken and within a few days my blood pressure dropped upon hearing news that all was well in terms of future worry about this. The local anesthesia wore off and the pain began — pain so intense that I had to sleep in one of only a few positions so as not to aggravate it. When we returned from a planned trip, I called the mammography center and asked if all this was normal. I was told this happens for some people because the doctor had to cut through nerves to get the biopsy. For some people? So I figured I was one of the lucky few and prepared to tough it out for at least another month. But the pain persisted. So I started Googling this phenomenon and was to find it happens everywhere, and no one is really told about it. I called the mammography office back and asked to make an appointment with the physician who had originally clipped me.
The conversation I had with this doctor was disturbing. With all my mammogram slides lit up in front of him in his office he said that in his experience, only 4 of his patients had ever experienced what I was following one of his biopsies. Two said the pain went away in the few months and he never heard back from the other two, so he assumed they were fine. My theory on this is that those two other women just never bothered to let anyone know what they were going through. Why? Because it probably felt like a useless exercise.
You may surmise by now that I’m not the shut-up-and-take-it type. I left this doctor’s office with more questions than answers and no reassurance this would be over soon. Months went by and enough of the pain subsided that I could sleep in almost any position. But I can still be sitting there watching TV and suddenly get a stabbing pain. Or I could try exercising and once the blood starts to flow, the pain comes back in spades. As I said, it has been more than 4 months since the biopsy. So I took the initiative to call again. This time I told the person on the other end of the phone that I wanted my complaints placed in my medical record. I didn’t see the use in speaking to anyone about it, but I sure as hell wanted someone to know what I was experiencing.
Today I got a call from the medical group. A kind woman asked about my recent report. It gave me an opportunity to tell her everything — from the doctor switch to the dismissive behavior on the part of the physician when I went to see him, to the information I had found online that contradicted everything he had told me. She said that perhaps they need to bring all this up in one of their next patient care meetings — things like actually TELLING patients what to expect and if they don’t experience this kind of pain, they should feel relieved. I appreciated the opportunity to vent and aptly apologized if there was too much drama in my voice.
I think the point of this blog post is to encourage women not to stay silent about what they are going through. Will this cause the doctor group to change their ways to suddenly begin warning women of the possibility of 4-6 months of post-op pain? Perhaps not. But not to let the medical staff know what I am enduring is a mistake as well. So it shall be written — somewhere. One of my BFFs is a seasoned nurse practitioner and what she has told me about doctors often makes my hair stand on end — how women are taken less seriously than men, and how they often miss important signs that something is wrong, forcing her to step in and save the day. No one ever talks about it afterward, of course.
Communication. It’s such an important part of medical care. Just as in any other important transaction, treatment or procedure, tell me what I may experience and you may not have me in your face.