I’m sure you’ve heard the old adage regarding a medical diagnosis: “Always get a second opinion.” When it comes to a diagnosis of cancer that old adage could be worth its weight in gold. Most doctors will advise you of your right to seek a second opinion and some insurance plans will cover some or all of the cost for obtaining it as long as you seek that second opinion within their system. Regardless of whether the doctor informs you of these rights, you must act as your own advocate when it comes to second opinions; in other words don’t just “go along to get along,” this is your life we’re talking about! You’re going to find that phrase repeated over and again in this chapter because it’s absolutely true, this is your life we’re talking about. Now, obviously there are situations where waiting for a second opinion before beginning treatment could or would negatively impact your long term health; in these cases you’ve got to move forward with treatment as quickly as possible. However, moving forward with a treatment doesn’t preclude seeking a second opinion.
What exactly is a second opinion? Simply stated, a second opinion is a re-examination of all test results that were used to make the initial diagnosis. Occasionally, the physician conducting the reexamination will ask that one or more of the tests be rerun, but many times he will utilize the existing reports, pictures, slides and biopsies to reach his conclusions.
Why do I think a second opinion is so important? In my mind there are two critical reasons to consider a second opinion: misdiagnosis and treatment options. Hidden within those rationales are additional options that make a compelling argument for the second opinion regardless of the type of cancer you have. Let’s take a closer look at the major reasons for seeking that second opinion.
The diagnosis of cancer typically involves a pathologist visually inspecting suspected cancer cells under a microscope. Most of these cells are harvested from a tissue biopsy taken from a suspected tumor or an abnormal cluster of cells, or in the case of a pap smear, a routine scraping of the cervix to determine if any cancerous cells are present. Although the exact rate of misdiagnosis is unknown, studies suggest that perhaps more than 15 percent of all cancers in the United States are incorrectly diagnosed. A study conducted at Johns Hopkins Hospital, one of the nation’s leading cancer hospitals, located in Maryland, discovered that 1.4% of their cancer patients were misdiagnosed. Those misdiagnosed included twenty who had benign tumors diagnosed as malignant.
Although the details of how the misdiagnoses were discovered are not specifically mentioned, it wouldn’t be a stretch to guess that, during the study, every pathologist’s report of findings was rechecked by another pathologist. For that reason, we can rest peacefully in the knowledge that, more than likely, not a single misdiagnosed patient underwent unnecessary treatment. But what about those patients who were misdiagnosed in the months and years prior to and perhaps even after, the study was completed? And what of the patients misdiagnosed at the more than five thousand hospitals across the United States and the tens of thousands of hospitals around the world each year? Can we assume that John Hopkins, being one of the great hospitals in the world, has a lower rate of misdiagnosis than that of the others? These are questions that are difficult to answer, however we can draw some conclusions that make a strong argument for a seeking a second opinion.
An article appearing in Health News Digest online, suggests the problem of cancer misdiagnosis is much more serious than the earlier John Hopkins study would indicate. The article reports that the American Journal of Medicine and the BMJ (British Medical Journal) Quality and Safety, estimates cancer misdiagnosis is somewhere between 15 and 28 percent. In the same article, posted on January 29, 2013, reports that in a survey of 400 leading cancer specialists, conducted jointly by the National Coalition on Health Care and Best Doctors Inc., put the percentage of misdiagnosis at somewhere near 10 percent.
According to information provided by the American Cancer Society, more than 1,665,000 new cases of cancer were diagnosed in 2013, in the United States alone. If the misdiagnosis estimates is reasonably accurate, we can calculate, based on the median between the two reports, that there were close to 205,000 misdiagnosis among the 1.6 million new cases of cancer in 2013. We can further surmise that more than 120 patients in every one thousand incorrectly diagnosed will undergo treatments that he or she doesn’t need, receive incorrect treatments, or receive no treatment when treatment is warranted, in large part because they failed to get a second opinion.
What a misdiagnosis may mean for you. If you choose not to seek a second opinion, it’s possible that in addition to being one of the 206,000 who is misdiagnosed, you may be treated for an illness that you don’t have or not treated for an illness you do.
Many patients will be treated incorrectly based on a misdiagnosis each year, simply because they didn’t feel a second opinion was necessary or felt that the doctor might be upset by the request for another opinion. Some of those patients will undergo unnecessary surgeries, while others will receive chemotherapy treatments and still others will have radiation therapy. Each of them runs the risk of complications during or after surgery or, they may suffer needless pain, nausea, and other maladies associated with the chemotherapies or radiation they receive. Beyond that, many treatments can have long lasting, debilitating effects on a person’s health, affecting their quality of life, even costing some their lives. It seems like a steep price to pay for simply “going along to get along,” with the initial diagnosis. What do you think?
Just as serious as an incorrect affirmative cancer diagnosis is the possibility of being diagnosed with a different type of cancer than the one you actually have. This can lead to therapies that are ineffective for the cancer you have and may weaken you to the point that you may be forced to postpone or forgo the proper treatments. Doesn’t a second opinion just make sense? After all, we’re talking about your life here.
Another part of misdiagnosis has to do with the incorrect staging of the cancer. Staging of a diagnosed cancer is vitally important in determining the extent or spread of the illness, and assists the oncologist in putting together a treatment plan. While biopsy analysis can be used with some success in staging of cancer, typically other tests, such as CT and PET scans are used to determine the spread of the cancer from its original location in the body. Stage 0 is cancer in its earliest stage and consists of perhaps a minute tumor, or as described on the cancer.gov website, “confined to the layer of cells in which it developed.” The cancer in Stages I, II, III, indicates a further growth of the single tumor or additional tumors in close proximity to the original tumor, or the cancerous cells having moved on to adjacent or nearby tissues or organs. Finally, a Stage IV cancer is one that has spread beyond nearby tissues to distant parts of the body, such as from the liver or kidney to the brain.
For obvious reasons a mistake in staging can have catastrophic consequences for the cancer patient. If a cancer is misdiagnosed as a Stage I, II and III, when in fact it has spread to distant organs, making it a Stage IV illness, then it may be treated less aggressively than it would be had it been correctly diagnosed, placing the patient’s long term health at risk. For this reason alone every second opinion should include a restaging of the cancer along with verification of the cancer itself.
Why you should seek a second opinion after getting an “all clear” following a biopsy. How many of us have a relative, friend, or know of someone who was given a clean bill of health one year only to be diagnosed with Stage 4 cancer the next? In my opinion, if you undergo a biopsy on what your doctor feels may be a cancerous mass, and are given the “all clear” following testing, it is always a good idea to request another opinion. I believe it is a wise man or woman who demands a second reading of the slides and reports. Let’s consider for a moment that the number of negative biopsy results that are actually positive could be consistent with the number of positive results that prove to be negative. So, if you’re at all concerned about the possibility of a misdiagnosis, and you should be, then a second opinion can provide peace of mind by reconfirming you’re “all clear.”
If your cancer is rare, it can be very advantageous to reach out to a recognized expert in your type of cancer for a second opinion. An expert in your cancer is going to be aware of all the latest developments in the treatment of your illness. In my case, because my cancer is so rare, I had to go all the way to the East Coast to find that expert. The consulting physician that I reached out to for a second opinion was conducting a study and clinical trial on MCL at the time of my diagnosis. To reduce any possible misdiagnosis to near zero, she wanted her pathology department at Columbia University Medical Center in New York to cut their own slides from biopsy material left from my colonoscopy and endoscopy.
Leading up to my Mantle Cell Lymphoma diagnosis in 2009, I went through a battery of tests. These included a colonoscopy and endoscopy, where biopsies were taken from my colon, small intestine, esophagus and stomach. Samples of the biopsies were sent to the mainland for a final diagnosis. In addition to the scopes, I had a CT scan, a PET scan, bone marrow biopsy and a spinal tap, all used to help stage my cancer. All of this information, along with pictures and reports from each and every test, plus the biopsy material, was examined by the consulting doctor, who confirmed the diagnosis of Stage IV, Mantle Cell Lymphoma.
(Be sure to stop by next week for Part II)