Radiation therapy: Don’t let me talk you into it

When I was young and foolish and just starting out in my career, I found it very hard to take “no” for an answer.  If a patient needed radiation therapy, and he or she didn’t want to have it, I did my very best to talk that patient into it.   I have always been a very persuasive person—if I didn’t get the go ahead on the first formal consultation, there would be another, and even another, all gratis, with a few phone calls thrown in between.

Every question that could be asked was answered, no stone was left unturned. My waking dream was that if I was good enough at explaining, finally the lights would go on and the patient would understand that really, truly, the recommended treatment would be at the very least beneficial and in the extreme life-saving.   The indications for radiation are usually fairly clear—sometimes we treat for a positive margin by pathology after surgical removal of a tumor; sometimes the tumor is curable with radiation alone, or the radiation option is less risky for a patient than a surgical option; sometimes radiation therapy is simply the best option for palliation of symptoms.  There have been very few, if any times in my professional life when I have seen a patient with cancer, and I say, “By the way, radiation therapy is optional—take it or leave it.”

Gradually, however, over the course of a long career I have been rethinking my strategy of talking patients into treatment.  Why?  Because it has become clear to me that the patients who I work the hardest to convince to get their therapy are the unhappiest patients I have.  These are the patients that, when having their breast treated, ask to see me on the second day and point to a rash on their leg, and say to me accusingly, “You told me THIS wouldn’t happen until the third week!”  When I explain that the rash on their calf has nothing whatsoever to do with the radiation aimed at their breast, they roll their eyes in disbelief.

I have come to realize that when reluctant participants are undergoing radiation therapy, everything that happens to them during the course of treatment (and for the rest of their lives in many cases) is the result of the evil X-rays.  Of course there are genuine complications of radiation, but losing one’s sex drive after having a skin cancer on the scalp treated, or developing a hemorrhoid after treatment of a lung cancer, or the breakup of a marriage after the life threatening illness of a spouse are not on the list.    It has to be the same body part that was treated—that’s how radiation works.  It’s all local.

Last week I saw a new patient, a genuinely lovely and intelligent woman of 70 years, who was diagnosed with breast cancer five years ago.  She had had a lumpectomy and a sentinel node dissection, and fortunately her cancer was found at Stage I.  But when it came to completing her breast cancer treatment, which included radiation to the breast followed by anti-estrogen hormonal therapy, she refused, despite the fact that her surgeon and medical oncologist argued strongly that she was depriving herself of standard-of-care management.  She stated back then, and again last week, “I will not do anything which will affect my quality of life.”  When she recurred, the tumor came back in the axillary lymph nodes, and the surgeon had a difficult time removing the nodes due to her previous axillary surgery, and microscopic disease was certainly left behind.

To have taken more tissue would have been to risk nerve damage and certain lymphedema.  So she was sent to me for radiation.  And, just like five years ago, despite the fact that we covered all side effects, risks and benefits during our 90 minute consultation, and she agreed to treatment, she now is once again questioning what the radiation may do to her quality of life.  Yesterday evening I called her on the phone at her request, to attempt to allay some of her fears.  I felt myself slipping into my old habits of persuasion, and I stopped.  I said to my patient, “You can have five weeks of fairly simple treatment now, or you can wait until you have another recurrence, and require additional surgery and a higher dose of radiation.  Which quality of life is worse?  Which will give you greater piece of mind?  You decide.  Don’t let me talk you into it.”

Really, don’t let me talk you into it.

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries

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  • Maggie Beaumont

    Interesting that the topic of ‘talking them into it’ shows up around radiation treatment. In our family, that was the one treatment that was far worse than advertised. We were given clear, accurate predictions of what to expect during the series, but the description of what to expect afterward was far from the truth. Eventually we realized that the folks delivering the treatments saw the effects during the series, and heard from their patients in detail each week; but the after effects they heard about only in the aggregate. Since after-effects didn’t make much of an impression on the professionals, they hadn’t given us as clear a picture. The treatment worked, and the patient made it through ok, but we would all have felt better about it if the predictions had been complete.

    • Miranda Fielding

      Maggie, thank you for sharing this. Sometimes we professionals DO forget to tell patients that some side effects can linger, or actually worsen in the first week or two after treatment. I hope that you told the radiation oncologist how you felt.

  • Christine P. Fisher

    My Mother was treated with radiation after lumpectomy. 7 years later she developed angiosarcoma, which killed her 2 years after that at age 79. Her dying wish was that her 4 daughters pledge to never have radiation therapy should we develop breast cancer. We all promised.

    • Miranda Fielding

      I am sorry for this terrible complication in your mother. Angiosarcoma is a rare complication of radiation therapy for breast cancer, with an incidence of 0.05 to 0.2 % and an average latency period of 12.5 years. Hopefully you will never be faced with the decision of whether or not to have radiation. Mastectomy is a perfectly acceptable alternative for breast cancer.

      • Christine P. Fisher

        The facility at which she had her radiation therapy was later found guilty of over-utilization of radiation therapy services and was fined several million dollars by CMS. I know that nothing can be done, but the lingering question remains in my mind – was she over-radiated??

        • Miranda Fielding

          Usually those cases of overutilization have to do with inappropriate use of more advanced technology without justification when simpler treatments are indicated. Since your mother’s secondary malignancy has been described in others, it was probably just really bad luck. Again, sorry this happened.

          • Christine P. Fisher

            Thank you.

  • Will

    I expected a story of learned contriteness. Instead, I got a cynical, sarcastic post from a frustrated doctor. “frustrated”–i accept. “cynical and sarcastic”–I hope you snap out of it. It’s bad for you. Most patients are doing the best that they can in an unknown world, and they need guidance. Most doctors are also doing they best that they can in an unknowable world, and they need perspective.

    • Miranda Fielding

      Why would I be contrite? After 31 years as a radiation oncologist, I’ve learned NOT to be frustrated when patients make the decision not to be treated after hearing a reasoned, detailed, referenced discussion of risks alternatives and benefits. I give that to, and owe that to all of my patients.

  • Molly_Rn

    We need a diagnosis of dying so we know when to let go and help our patients go quietly and peacefully into the night.

  • Miranda Fielding

    PS. The patient referenced above decided to have treatment. She finished two weeks ago and at the end stated, “I don’t know what I was so afraid of.” She had minimal skin reaction and fatigue, and no lymphedema. She is happy with her decision.