Originally published in "Discussions with Don S. Dizon" on The Oncologist.
Part of the challenge in oncology is the balance between hope and reality, and that is probably the most important thing to strive for for patients living with metastatic disease. Often times, the important conversations relate to treatment options, goals of care, and patient preferences (i.e., how frequent the visits to the doctor and for infusions, side effect profiles, and the important events in their lives which they do not want to miss). Yet, some of the most important are also the ones I struggle with the most.
This was the case with Laynie*. She and I met when she was diagnosed with ovarian cancer. I had hoped to cure her of her advanced disease, and given that she had no evidence of disease at the completion of her primary surgery, I had every reason to offer that. Unfortunately, she had relapsed only six months after treatment ended. We had talked then about the incurable nature of recurrent ovarian cancer and that our goals would need to change to more realistic ones – control of cancer and prevention of symptoms. I hoped that with the current options of treatment, she could continue to live and thrive, despite recurrent disease.
Sure enough, a year later she was still okay – on treatment with stable disease and no evidence of progression. She was still working and still enjoying her grandchildren. At the look of her, one would not have guessed she had recurrent ovarian cancer, except that her treatment had taken her once flowing blonde hair.
“You look really good,” I told her.
“Thanks so much,” she said. “I wasn’t sure I’d be here now, let alone feeling well enough to work. I just wish I didn’t have to sacrifice my hair.”
We had talked about discontinuing treatment given her stable disease, but we had opted to continue treatment, as maintenance. “If it ain’t broke, don’t fix it,” she said.
“I got this letter in the mail, though. I am due for my mammogram and I am wondering if I should do it. What do you think?” she asked.
For a moment I did not know what to say. Although she was doing well, it was very likely she would someday die of her ovarian cancer. The thing is, I had no way of knowing when that day might come. I have found my predictive abilities to the question, “How long do I have?”, are terrible, especially in the situation that Laynie was now in.
Still, I wasn’t sure what to do about breast cancer screening. Would she benefit from this? Would finding early stage breast cancer help? That is, in the face of her high risk of dying of ovarian cancer, what could be gained by finding and treating mammographically detected early breast cancer? Yet, at the same time, I had no way of knowing if she might die of a breast cancer not detected by screening – especially since her ovarian cancer was under control.
What constitutes appropriate primary prevention measures for patients with recurrent or metastatic disease represents a major dilemma. A growing number of these patients are now living with cancer as a chronic disease thanks to targeted treatments and immunotherapy, whether it be the utilization of mammography or colonoscopy, or the use of medications to prevent heart disease. In the most extreme example of this, Dr. Russell looked at the records of 203 patients referred to palliative care for a life-limiting illness (almost 70% with cancer).1 Among this group, almost one in four were taking a lipid-lowering drug, and for 40%, it was being taken as primary prevention.
Although I could not be guided by data, there was still a patient in this room, waiting for my opinion.
“Well, I don’t know if it makes sense to do it,” I told her. “Your ovarian cancer is quite serious, even if it is under control right now, and more likely than not, it will be the thing that kills you eventually. Still, ‘eventually’ could mean months or years, and I have no way to tell which it is. So, let me ask you – if we found something on the mammogram, would you want to pursue it?”
She looked at me at first, obviously giving it some thought. “Yes,” she said. “I would want something done. But more than that, mammograms are something I’ve done for decades. It’s part of my annual routine, and not doing it to me would mean giving up on any hope I might live for a long time. And I’m not about to give up.”
It was my turn to contemplate her response. A part of me understood what she was saying and wanted to support her. Yet, there was another part of me who felt that mammography would be a waste of her time. I was tempted to tell her so, to tell her to seize this and every day to its fullest, and to live. Screening in the face of her diagnosis made no sense. But I didn’t say that. Instead, I told her I understood, and then gave her permission to proceed with her mammogram (though, quite frankly, she neither needed or asked for it!).
Ultimately, I had to remember that I was not her counselor, priest, or parent. I was her doctor, and my job was to give my opinion, even if it could not be backed by any data, and then to respect hers. After all, there was only one person walking this road of cancer, and it was my job to make that road easier.
Mark R. Hutchins, MD
Mar, 10 2018 9:13 AM
I hear you. My take on this over my time in
Oncology is that there is too much
emphasis on things like mammos and statins in general let alone within the segment of the population with terminal disease.
Given that neither you or she could find anything on clinical exam what are you going to find on a mammo, the eradication of which, that will enhance the quality of her life. That we have not the means to cure her is a given, but we need not go out of our way to add additional burdens to her existence. Encourage activity, rejoice in her engaging attitude in the face of terminal disease but steer her away from pointless and expensive screening.
Mar, 10 2018 12:53 PM
Great column, Dr. Dizon. I agree that you did what you could & should have done. You gave her information, knowing that it was up to her to decide. Maybe the mammogram would also give her reassurance that there was no cancer in her breasts. Maybe there will be some great treatment for advanced ovarian cancer next year, while she suffered from an aggressive form of breast cancer left untreated.