Don’t forget those where cancer screening didn’t make a difference

Dont forget those where cancer screening didnt make a differenceI had the opportunity recently to participate in a Twitter chat on the topic of colorectal cancer awareness. The chat was intended to bring attention to a nationwide campaign called “80 by 2018” designed to increase colorectal cancer screening rates to 80% of the population over the next 4 years. If it is successful, we should see a decline in both incidence and deaths from this disease.

But I am haunted by two of the comments I tweeted during the session chat that won’t leave my conscience:

“As a doc, you don’t forget the patients you couldn’t help. And you celebrate those you did.#CRCawareness is key #80by2018

“Let’s remember that screening doesn’t help everyone, so don’t forget the need for more research in understanding #CRC #80by2018

While we celebrate the opportunity to save more lives with screening, we cannot ignore or forget those for whom screening for colorectal cancer (or other cancers, for that matter) couldn’t or didn’t make a difference.

Let me share a couple of stories with you. These are obviously people I have remembered over the years and who have had a continued impact for me personally.

The first person was a woman in her 70s. She was a pleasant lady who had had a prior stroke but was still very functional and otherwise in good health. I would see her in my office periodically during the year for routine medical care. During that time — well before electronic health records were available — I would keep a piece of paper in the front of my chart to record when certain periodic tests like cholesterol and mammograms were done. I would enter the date, and indicate if the test was completed. Colon cancer screening was one of those tests on the list.

Every year, we had the same discussion: Please get screened. And every year, the answer was no. I would explain why I thought it was important, and she would nod her head and say, “No.”

She wouldn’t use the stool cards to test for blood, and I was not permitted to do any form of internal exam. And every year, over about 7 or 8 years as best I recall, I would make a little note in my file that we had that discussion. Until …

The call came from her son, who had been incredibly supportive of his mother through the years. She had some blood in her stool. I had her come in immediately, and a rectal exam confirmed their observation. She refused a sigmoidoscopy or colonoscopy, but said she would have a barium enema. My heart sank when I saw the report: There was an extensive cancer in the sigmoid colon, just above the rectum. And further testing showed it had spread.

You can imagine the tragic end to this story. She had surgery, but the cancer was advanced. She declined any further treatment and subsequently died at home.

One moment that I have never forgotten is bringing her son from the waiting room to my office to tell him about the x-ray results. I was terribly saddened. Something I could have found had not been found. She never gave me the opportunity. I told him about the results, and then showed him my chart. At that moment, he was more a force of care for me than I could be for him.

“Doctor, I know you talked to her every year. You don’t have to show me the chart. She told me every time she came for a visit. She just wouldn’t listen.”

There are other stories, different stories, that show us another side of this terrible disease.

My patient was a young man, in his late 30s. Hardworking, family, responsible. All the “right” things. During a routine examination I found that he had an iron deficiency anemia. Men at that age don’t have iron deficiency anemia. It is a signal that something may be terribly wrong, and it was: Colonoscopy showed a cancer in the right side of the colon (those cancers tend to bleed slowly over time). The good news was that the cancer was reasonably small and could be resected. We did an evaluation which at the time included a CT scan of the abdomen. It was completely negative. No spread was evident.

About 10 days later, after he got his work squared away, he was admitted for removal of the cancer. I got a phone call from his surgeon asking me to come to the operating room immediately. The CT scan was hanging on the wall, and it was absolutely clean. But the abdomen was not. There were large lesions in the liver that were cancerous. These would not have been missed on the CT scan. His disease was rampant throughout his body. Treatment options in those days were limited, and there was nothing we could do.

And then there is the conversation I had with someone that saddened me to my core. A person at high risk, who had polyps resulting in multiple follow-ups with colonoscopies. She was religious in keeping her appointments, and her doctor screened her in accordance with well-accepted guidelines. And now she had a cancer that was large, had penetrated through the bowel and leaked into the abdomen. The cancer had a particular genetic marker that was consistent with its aggressive behavior. Screening did not prevent this tragedy.

Why do I tell you these stories? Why was I haunted by my comment that we celebrate those we help, and shed tears in our memory for those we could not?

There is much we can do in this country to reduce the incidence and death of colorectal cancer if we did what we already know. We have already made considerable progress, but we can do more. And screening is a large part of how we can get there. For many patients, screening may catch a polyp early before it becomes cancer or detect a cancer when it is in its earlier stages. If we could get more people screened for colorectal cancer, there is no question we could save many more lives.

But then there are those who don’t fit the usual picture. They may develop the disease at a young age, they may have a family history, they may have a genetic mutation in their cancer. Whatever the reason, their cancer is the type that screening may not help.

So, as I said, we celebrate our successes. We celebrate those where we can prevent the disease or catch it early or provide treatment that significantly improves the chances of survival. But we also mourn those where screening could not make a difference, where we need to better understand the reasons why the cancer was so malicious and so devastating that there was never a chance.

We must never forget that no matter how successful we are for so many — whether it be breast, lung, colorectal or any other cancer — there remain far too many where early interventions simply don’t work. And in the memory of those who never had a chance, we must move forward with every resource we have to find the answers, and offer hope to those who follow.

J. Leonard Lichtenfeld is deputy chief medical officer, American Cancer Society. He blogs at Dr. Len’s Cancer Blog.

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  • JPedersenB

    And then there are the people who are harmed by colonoscopy. I know 4, including my father….

  • meyati

    I had a funny zit looking thing above my lip, just below the nose for 25 years. I didn’t like it. I went to Air Force, I went to civilian. I thought that if I got a civilian PCP-and he kept seeing it, he would remove it. That didn’t work. Meanwhile I walked into dermatology, surgery, plastic surgery, the university student and professor health clinic, doctors in many different health plans, hoping they’d have a different brain process-think like a 3 year-old-curious. For 3 years, I volunteered twice a year to be examined by a bunch of dermatology students, and I asked them about the thing on my lip. One male student spoke up for me, and he was humiliated by the practising dermatology prof. -You won’t be a good doctor-you let the patients walk all over you-You aren’t going to make it as a doctor-Women worry about every blemish-a doctor decides what is important–on and on. I never went back. I just kept going to more doctors.

    I had 2 types of insurance where I could go to the doctor of my choosing. I would pay, and then maybe reimbursed. Money was not the issue. I was told that it was too little to be removed, if it turned out to be cancer that they would be in trouble-I still can’t figure that one out. I was told that they would not be told by a patient how to practice medicine; that I was beautiful and vain; that their practice required all biopsy results to be reviewed by their peers and they’d be laughed at for poor judgment. I was asked why I wanted a pit in my face. It was nothing, believe them. It wasn’t rooted, so don’t worry. Please quit nagging them and don’t come back.

    I’m into my second year of remission. I had part of my nose, lip and soft tissue in between removed in the second biopsy. Then I had high dosage radiation. I didn’t fancy having my menges exposed for a year or so, and living on an antibiotic stew. When they first took the mother ship out, they said “It’s larger than I thought. It can’t be a funny looking cyst like I thought.”

    I had radiation for incurable atypical BCC. I have been told by my ENT that it will eat through my bones, and tunnel through my brain like PacMan until it hits a vital gland. Side bar: This medical school, UNMH, is considered the very best in detecting skin cancers. New Mexico-a mile plus high desert. Right now I’m in the lowlands of almost 6,000 ft.

    If doctors can’t see something right in front of their face and diagnose it-get curious about it, then scans and colonoscopies can be understandably trickier.

    I don’t understand the disparity between the clean abdominal scan of the young man, while his liver was filled with tumors. What happened? Did he fast before the scan? Did something go wrong with the equipment? You certainly did your job of being a good doctor, unlike mine. I am getting excellent care now. They respect me, as you do for your patients. That means a lot.

  • Markus

    Very good article showing that no screening program can be 100% effective. Your first patient did not follow your recommendations. The second fell outside of screening guidelines because of youth; unless you knew that he was part of a Lynch syndrome cohort, and your final patient had adverse biology. These problems happen in any screening program.
    I my experience, the false negative CT happens because of mistiming of the contrast bolus. If the images are gotten too soon or too late, the neoplastic vascularity is not seen. I have seen scans go from neg to pos to neg when sequential studies are gotten. This can also be a problem when assessing response. If the patient is clinically better or worse but the scan contradicts, talk to your radiologist.

    • meyati

      Thanks for answering my question about what could have gone wrong in the scan of the young man. I hope that I don’t have that type of problem in any of my future scans with contrast. I wouldn’t mind a false negative-but I’d be uncooperative if I had a false positive or even a real positive. I don’t fancy having nose, bone and flesh removed. In spite of a quack telling me that I’d look exotic with an eye patch, I know that’s a lie. Only Johnny Depp looks exotic. I’d just ride it out the best that I can. I don’t know if my doctors and HMO will like that, and give me anything for pain relief. They wouldn’t even give me one 10 mg codeine when I jammed my arm into the rotator cuff. They wanted to give me Oxy-I’m allergic to acetaminophen. I told them to go to hell. I have surfer’s ear. I watched my father die from cancer when I was 13. I’m scared of the pain.

  • Lisa

    I feel the same way about mammograms as you do about prostate cancer screening – they are not that good of a screening tool and the evidence is that many women are treated for cancer or in situ cancers that would never harm them. And while the death cancer rate has gone down somewhat since screening mammograms have become more widespread, that decrease can be contributed to improvements in treatment. But I do think screening for colon cancer is worth it as it reduces the death rate from colon cancer.

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