A doctor once tried to convince me to take tamoxifen, saying that, even though I was hormone-negative, it would keep hormone-positive from forming. That might be true, I said, so shouldn’t all women be on the drug? They probably should, he said. Aurghhhh. The clincher to his argument, though, came after I objected to the potential side effects of the drug, including uterine cancer. No big deal, he said. “You’re postmenopausal, so you’ll start bleeding and we can catch it, then take your uterus out, and you’ll go back on the drug.”
Oh, is that all? Whatever could have been my objection to such a simple process? Deal with cancer again, go through surgery, take forever to recover. And then get on with my life forever changed again. No big deal. I did it once, why not just plan to do it again sometime down the road?
This is wrong on so many levels that, four years after the fact, I am still sputtering.
First, of course, is that his medical advice was weak. Research shows that tamoxifen does little for hormone-negative and that it can, in fact, increase the risk of hormone-negative forming. In cases like mine, with a weakly positive reading for progesterone, it might have done a few ounces of good, but the risks far outweighed the benefits, in my mind.
But the science here is not the biggest issue. What continues to roil me royally is his callous lack of understanding of how cancer feels to the patient.
I was reminded of this incident recently when a friend was worried about a mammogram that showed small spots on the breast that had been affected by triple-negative breast cancer three years before. The doctor told her she expected good news from the biopsy. The doctor clarified this with: “Good news does include if it’s cancer it is in the same breast and we can just take care of it with a mastectomy.”
Again, no big deal, just major surgery and the trauma of another cancer diagnosis.
The spots were benign and she was physically fine, but the experience left her tired and depressed.
So docs, before you speak to your patients about the possibility of cancer recurring remember:
• Cancer is a life-altering experience for the patient and her loved ones. We don’t just deal with it and pick up our lives where we left off. We are forever terrified of its return. We fight to go back to being just us, not the Person with Cancer. And, once we have faced the disease that might be our killer, we can never look at cancer—any kind, any stage, any prognosis—with anything short of terror.
If a patient successfully fought off an armed intruder would you shrug off the possibility of another intrusion with “Oh, if it happens again, you’ll just knock him off the deck again and go on with your life.” Cancer to us is that armed intruder and, even if we think we can win, we are not up to another fight. And, by the way, we’re not sure we would win.
• Cancer treatment is traumatic and leaves lasting effects. We forever carry the physical and mental scars of surgery, radiation, and chemotherapy: exhaustion, pain, dark memories of dark days. Surgery hurts, chemotherapy makes you sick in multiple ways, radiation leaves neuropathy that, to some women is as painful as surgery. My lumpectomy incision still hurts, my underarm is painful from lymph node removal, I remain worried about the effects of chemo on my heart, and I was tired for more than a year after all of this. And I had it fairly easy. Some women lose their fingernails, others dip into a deep depression, many cannot work through treatment and lose their jobs.
Oncologists, radiologists, surgeons, cancer nurses, and all healthcare professionals: Remember that these are real and very worried people in front of you and that they cling to everything you say. So watch your words. Don’ shrug off a cancer recurrence as though it were a trip to the mall. Always ask yourself, “How would I want to be treated if I were my patient?”
We’re people, not tumors. You treat the tumor, but you’re talking to the person. And, boy are we listening.