Mr. G* was diagnosed with advanced prostate cancer two years ago and has been on a succession of medications to control a progressive cancer. His PSA never nadired after surgery, and adjuvant radiation only increased his urinary problems. Androgen deprivation therapy added to his symptoms, and he is now considering taking a second-generation androgen-receptor antagonist. Fortunately, his cancer has not yet metastasized, and despite the side effects he endures, he makes the most of every day.
He is now 69 years old. The last two years have been busy with medical appointments, scans, blood tests, and visits with me and other oncology care providers to discuss his treatment options. Over the years, Mr. G and I have talked about his life goals. From the beginning, he has always been clear about his goals of care: to live long enough to see his grandchildren grow into adulthood, and to spend quality time with his wife of 45 years, Sheila*, at their lake cottage.
He retired sooner than he had planned after his diagnosis, when he realized that his life was likely going to be shorter than he had hoped, and he doesn’t regret that decision for a moment. He has spent a lot of time with his grandchildren, something he cherishes. He has also spent more time at the cottage with Sheila and has become quite adept at fixing the inevitable breakdowns that occur there.
The last time I saw him, Mr. G was not his usual affable self. He was agitated and had difficulty controlling his voice as he told me about an appointment he had with a new-to-him health care provider at an urgent care facility. He and his spouse were at the cottage when he experienced sudden onset hip pain. His wife panicked and insisted that he see someone. He was pretty sure that the pain was muscular, a result of some work he had done clearing the brush at the end of the yard, but he didn’t want to upset his wife so he agreed to go to the nearest town to seek medical attention. The town was just 20 minutes away, and this seemed a better proposition than the 2-plus hours to get back to the city. In addition, he knew that on a Sunday, he would have to go to the emergency department in the city, and the wait to be seen would be very long.
He was seen quite quickly at the urgent care center; the physician in attendance seemed to take his complaint seriously and wanted him to have an X-ray of the offending hip. He was not convinced this was necessary and suggested to the physician that he was only there to placate his wife and that he would talk to his oncologist the following week when he went back to the city for his usual follow-up.
The response of the physician was unexpected and not appreciated.
“He told me that I have a very serious condition and that I should not take something like pain lightly!” Mr. G recounted. “He also said a bunch of things that got my wife all upset, and that was just not right!”
I asked him if he could recall exactly what the physician had said.
“Well, like I just told you, he told me that my cancer was very bad. As if I didn’t know that! And he said that I probably have cancer that’s spread to my bones … I know that was what my wife was worried about, but now she’s sure that’s what’s happening. He told me that there was pretty much nothing they could do about things if the cancer had spread. He was mad at me because I didn’t want to get the X-ray there, I think.”
I nodded at him and asked him to continue.
“What does he know about my condition? He’s not a cancer doctor! He got my wife all upset, and she got even madder when I walked out of there. She’s been on my case to get the damn X-ray, and so we came into the city early, and I had to go see my usual doctor get the form to get the X-ray and I waited there for almost 45 minutes to get it done. Now I’m waiting to see my doctor, and it’s a whole darn day wasted when I could be at the cottage.”
I asked him about the hip pain.
“Oh, it’s gone, just like I thought. I knew it was from cutting the brush. But you know Sheila—she’s all in a tizzy about this and won’t let me do a thing in the yard out there, and the summer’s so short, and I have things to do before the winter comes …”
By now, he was out of breath.
“And you know what the worst thing is?” he asked. “He scared me. And he sure as heck scared Sheila. He said that if the cancer had spread, there was nothing that could be done! That’s not what my oncology doctor told me the last time I saw him. We had this whole long talk about this other medication that could help. I have been so positive all this time, and he just took all that away. Not just from Sheila but from me also! He took away my—our—hope!”
And there it was: the thing that had him so upset. One sentence from a stranger had taken away the hope that this man and his wife had for the rest of his life. The doctor’s assessment was not accurate; there are a number of new medications available for both non-metastatic and metastatic castration-resistant prostate cancer and the prediction that “nothing could be done” for this man was wrong. But worst of all, it had taken away the essence of the cancer experience for many—hope.
Hope comes in many forms. Hope can be positive when it buoys the spirit. Hope can be lost when reality reflects a poor outcome. False hope may reflect a distorted or inaccurate vision. Hope can take a long time to build and can be destroyed in an instant. Hope is something that we all hold onto as we strive to overcome barriers that prevent us from achieving our goals.
I did not try to excuse the physician’s inaccurate prognosis, and I repeated to Mr. G that we have medications that can prolong his life. I told Mr. G that I do not know what motivated the physician to say what he said, but I did know what the end result was, and I promised him that I would work very hard to help him regain the hope that had been taken from him. That work started by giving him the results of the hip X-ray: completely normal with no evidence of metastasis.
*Name and identifying details changed to protect patient privacy.
Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.
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