How do you know your patients are cancer-free? Often hard to answer and often asked with a note of fear suggesting they don't really want to know the answer.
This is one of those questions I don’t really know how to answer. It usually occurs at the completion of adjuvant therapy but often is the last thought at the end of an otherwise routine follow-up visit. Often blurted out with a subtle note of fear suggesting the questioner doesn’t really want to know the answer.
Frequently it is part of a request to have CT imaging or a PET scan or “something to check me all over and make sure there’s nothing there.”
I am well aware of all the guidelines against imaging asymptomatic patients. When I order scans, even when they are medically necessary, I frequently get the dreaded “request” for a peer-to-peer review. We all love to spend time going through the insurance company phone tree to state our name and serial number to a screener who then thanks us for our time and puts us through to our peer who apparently works from home. The last one I spoke with was drowned out by his dog barking. You plead your case and hope for a confirmation number.
A recent review by Mark Clemons, MD, in the Canadian Medical Association Journal found that 86% of over 26,000 stage I or II breast cancer patients had imaging for staging and 90% of stage II patients had imaging within 3 months of diagnosis. Younger women and patients with multiple medical issues were most commonly tested.
We all know this is not best practice. There is an extremely low chance of finding metastatic disease and far greater risk of finding something that is benign but will lead to anxiety, further testing-some of it invasive-and no demonstrable benefit for the patient other than false security.
The same standard is true for follow-up. There is no measurable benefit to routinely testing asymptomatic patients who have a normal exam.
So why do I always feel like Dr. Meanie after explaining that to my patients? The pleading look and the plaintive “I would just feel so much better if I knew my scans were clear. My friends keep asking me when I’m going to have scans done.” I want them to feel confident and live their life without the black cloud of cancer looming directly overhead. Compare it to heart patients. They can suffer an ischemic event, be treated and sent on, but they can have another event at any time and there is not enough cath dye in the world to assure that they will never have another, possibly fatal, ischemic event.
It is too easy to order imaging when you don’t know what to do or say. Our radiologists see it all the time-they can tell you the doctors who order restaging for every single patient complaint. A goals-of-care conversation with the patient who has progressed through multiple lines of therapy is easily delayed by saying, “Let’s get another CT and I’ll see you in 2 weeks.” Doctor, do you really think that scan is going to impart some evidence you do not already have before you?
So I acknowledge the evidence for good practice. But I will tell you it is sobering-no, heartbreaking-when that best practice doesn’t work out so well.
I had a young patient with stage I low-risk breast cancer. She was doing great, had no symptoms. In for a routine exam, she asked about testing. I went through my spiel, went over the written guidelines with her. Questioned her closely about symptoms-none. Four months later I get a call from an orthopedist. She had walked into his office with bone pain and his plain film showed her joint to be completely destroyed from metastatic disease.
I was speechless. I felt wretched. Why didn’t I just get the scans she wanted? I know it wouldn’t have made a difference in her treatment. She still would have developed metastatic disease. A scan does not prevent metastases, nor does earlier diagnosis translate into prolonged survival.
She did tell me she was really mad at me at first, and I thought she would change doctors, but she has dealt with her recurrence with incredible courage and a positive attitude. She said she knows this didn’t happen because she didn’t have scans. I still feel burned by what happened, however. Now I second-guess myself every time a patient asks for tests. Is there anything that would qualify for evaluation? How do I know when they are cancer-free?