Over- and Under-Diagnosis and Treatment of Breast Cancer

I found this interesting discussion on over and under diagnosis of breast cancer and how to avoid it. Its definitely worth the read.

The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.

Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.

But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.

I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.

That's a lot of money

There is a lot of talk about breast cancer over diagnosis and false positive mammograms. A new report looked at the costs involved. They are big numbers:

How much does each false positive  mammogram, or IDC or DCIS over diagnosis cost?

• Mammogram - $852
• IDC - $51,837
• DCIS - $12,369

The total is around $4 billion (with a b) each year. That is a lot of money! The breakdown is $2.8 billion resulting from false-positive mammograms and another $1.2 billion attributed to breast cancer overdiagnosis. But its not just the financial cost but the emotional toll on the patient.

"Apart from the financial cost of screening tests and treatment, false positives and overdiagnosis expose women to risks from additional medical procedures, not to mention psychological distress. It's not uncommon for mammograms to turn up some apparent abnormality that has to be resolved with more imaging tests or a biopsy.

"We're hoping that the financial cost of this problem will help cast into greater relief the human cost," said co-author Mandl. "The two messages together are powerful. The fact that this is not only a problem, but a very costly problem, we hope will accelerate the attempts to try to fix the screening practices."

But another expert defended those practices, and called the study one-sided.

"There was no attempt to balance the costs with the benefits," said Richard Wender, who heads prevention, detection and patient-support efforts at the American Cancer Society. "I strongly feel that every study that looks at the downsides of any screening test has to be balanced with the benefits.""

But the benefits? Are those lives saved by screenings? I would hope so. But that is so much money. Maybe we need better diagnostics as well as a cure.  And yesterday's post on mortality vs survivorship numbers - think of how skewed they could be as a result of these errors.

Cancer mortality vs survival rates

Overdiagnosis of cancer greatly impacts the survival rates. Overdiagnosis occurs when people are told they need treatment for a cancer which will never progress or isn't even cancer (but we really hope that it really is cancer). If your cancer is never going to kill you, you don't need the treatment. And the treatment can cause you harm.

"Overdiagnosis can have a powerful effect on survival rates, even if no one has their life prolonged.
To understand why, imagine a country in which 1,000 people are found to have Cancer X because of symptoms (they all have progressive cancer). Five years after diagnosis, 500 are alive — producing a five-year survival rate of 500/1000 or 50 percent — and 500 have died.

Now imagine the same country with lots of cancer screening and/or incidental cancer detection.  Perhaps 2,000 would be given a diagnosis of Cancer X, although 1,000 would actually have indolent forms and not be destined to die from their cancer.  Five-year survival will increase dramatically, to 75 percent, because the 1,000 people with indolent cancer appear in both parts of the fraction: 1,500/2,000.  But what has changed?  Some people have been unnecessarily told they have cancer (and may have experienced the harms of therapy), and the same number of people (500) still died from Cancer X."

Got it? Good. And this over diagnosis costs billions. And the stress is horrible on the people. And unnecessary cancer treatment, which is pretty harsh, can cause people long term health concerns.

So when people run around saying "all these advances from research your donations helped fund have helped reduce the survival rates from this cancer", don't accept them at face value. Real research is needed to help prevent overdiagnosis and mortality rates are what need the real review.

Overdiagnosed and overtested

You are diagnosed with cancer after some tests. Then you are sent for more tests to figure out the best course of treatment. You feel tested to death - too many injections, IVs, scans, and time in waiting rooms. Finally you get a course of treatment. Did you really need all those tests?

New diagnostic tests keep being developed to help determine the best course of treatment for a patient. But how much of their results are really helping doctors and patients? A recent study confirmed that the doctors see the tests as confirmation of their recommendations. And that patients do not really understand the results.

I have been on numerous breast cancer boards where women question the significance of the results of their Oncotype DX and other tests. "My results were this and my doctor said this, what should I do?"

"Fourteen oncologists were surveyed at teaching and community hospitals in Toronto. Most said the tests enhanced their confidence in deciding whether to recommend chemotherapy in cases where the best course of action was unclear to both the physician and the patient - especially when they were truly undecided. While most said the test supported their assessment rather than altering their practice, one oncologist described the test as a "tie-breaker."

But they raised concerns about overuse and inappropriate use of the test; over-reliance on the test relative to other, more established pathological indicators; the fact that testing takes places in only one lab in California; aggressive marketing of the test and its high cost, about $4,000.

Dr. Bombard said these reservations were consistent with general concerns about overuse of laboratory testing, which has increased rapidly, contributing to the financial strain on health care systems. Estimates suggest that 10 to 50 per cent of lab tests in Canada might be unnecessary and one-third of U.S. health-care spending results from overuse or misuse of tests, procedures and therapies."

This last sentence sums it up for me. Do we need all these damn tests? Just because we can test for something do we really need to?

Diagnosis and overdiagnosis

What is over-diagnosis? My non-medical opinion is that over-diagnosis happens when a thingy is found that isn't a significant thingy and could have been left alone. A more medical definition and discussion can be found in this study which looked at a bunch of other studies for signs of bias and overdiagnosis. (Yes a study about studies.)

"Overdiagnosis, the detection and diagnosis of a condition that would not go on to cause symptoms or death in the patient’s lifetime, is an inevitable harm of screening. Overdiagnosis in cancer screening can result from non-progression of the tumor or from competing mortality due to other patient conditions (that is, other conditions that would lead to the patient’s death before the cancer would have caused symptoms). The consequences of overdiagnosis include unnecessary labeling of people with a lifelong diagnosis as well as unneeded treatments and surveillance that cause physical and psychosocial harm. A patient who is overdiagnosed cannot benefit from the diagnosis or treatment but can only be harmed."

Re-read that last line. 'A patient who is overdiagnosed cannot benefit from the diagnosis or treatment but can only be harmed.' Isn't there a line in the Hippocratic oath saying 'do no harm'? This is the root of the problem.

Medical technology has advanced to the point where it detects small anomalies which are often too quickly diagnosed as 'bad things' when they could just be weird thingies that can be left alone. All these screenings we have contribute to overdiagnosis. How many people have had polyps found in colonoscopies which are nothing but force the patient into more frequent tests? Or a woman who is diagnosed with DCIS - will it ever become symptomatic? We don't know. Or do you know anyone who, after going through a cancer diagnosis and treatment, was later determined to be at a lower stage and didn't need as much treatment as they had had?

To me, this is the crux of the problem. We see too quick to say 'its cancer, get rid of it' when we don't always know. We have lots of tests to find cancer but do we have enough tests to determine if a cancer will be symptomatic? Is enough done before treatment starts to learn as much about the cancer to make sure the treatment matches the correct diagnosis?

I strongly feel this should be an area of significant research. We know so much about cancer now and spend a billions each year to treat cancer and find a cure. Shouldn't we back up and do more research on trying to distinguish which cancers are going to progress and which are not?

Diagnosis and Being A Patient

I am going to write a series of posts on diagnosis, over diagnosis, and then over treatment. This is the first one. I plan to write the others soon but make no promises on how soon.

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When you go to the doctor with a symptom, to my non-medical school educated brain, they start by asking a few questions and then proceeding with weeding out the most frequent and most possible and eventually get to a diagnosis.

A sore throat - is it from coughing, allergies, strep, acid reflux, several other options, and finally possible cancer? Probably not cancer so we shouldn't think it is at first even with a history of cancer. Cancer people get the same ailments as other people.  It takes a bit to get through the process of elimination to get from the first to last. And a medical professional will give advice on what to do to get better.And we need to do our part in cooperating and not demanding extra tests and treatments.

Right now, for example, we have problems with antibiotic resistant germs because antibiotics were over-prescribed. As patients we need to do our part and not demand medications and tests we do not need. A sore throat may not be strep and can be determined as that through a visual exam. Antibiotics do not help viruses so don't request them. We need to believe our medical professionals when they tell us what is wrong with us and follow their instructions if we hope to get better quickly.

If we don't follow their instructions, we won't get better. Here's an example: Someone I know had a sore upper arm that wouldn't go away for months. He went to the doctor for his annual physical and the doctor said some kind of strain, go to PT. The next year he went back to the doctor for his next physical and the doctor asked about his arm, which still hurt. Then he finally did agree to go to PT and his arm stopped hurting.

But if we do follow their instructions and do not get better that becomes another story. This is when the diagnosis process can take more investigation and lead to a more serious diagnosis.

In addition, we need to be mindful of medical expenses and costs - just because we do not pay for something because it is covered by our insurance, the cost is still felt - maybe by higher premiums later on. If a doctor tells us what is wrong, we usually do not need to question them. There is no need to doubt them, unless we have a reason.

As patients, we need to work with, not against, our medical team. Take their advice and work with it. Accept their diagnosis and go with their treatment. Unless there has been a problem in the past, in which case that's another story.

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So to my non-medical school brain, this is the basics of diagnosis. I will write more on over-diagnosis soon.