Many people do not appreciate what a critical issue getting the diagnosis right is in cancer. Some leading cancer authorities recognize that the reading of pathology reports is often the weak link in cancer treatment. The error rate in some hospitals is remarkably high. If you get the diagnosis wrong, you get the treatment wrong. So the value of getting a second reading—preferably from outside your medical center—can be significant. Some cancer centers do this routinely—especially if they are not certain of the reading. But it is certainly worth considering.
The second point I’d like to highlight, discussed below, is the potential value of chemosensitivity testing for your tumor. These tests are controversial. Many oncologists don’t believe they have value, but many patients and integrative practitioners do. These tests require fresh tumor material taken and handled carefully at the time of diagnosis or surgery. So this is an early decision to make.
Finally, the targeted therapies and molecular profiling section below is especially important—and another area for early attention, since these decisions can really affect treatment.
Most people just want to focus on treatment choices—conventional or integrative. The importance of diagnostic tests is widely overlooked. So these often complex decisions merit your careful attention.
Diagnostic Tests: General Information
In order to get the right cancer treatment for you, getting the diagnosis right is the most important first step. Conventional oncology care includes standard tests that will be performed to find out about the cancer itself:
- The type of cancer (breast, colon, and so on).
- The stage of the cancer (anywhere from pre-cancerous to metastasized to other parts of the body); for more information on staging, see the National Cancer Institute: Cancer Staging.
- The grade of the tumor (how aggressive the cancer is, how likely it is to grow and spread); for more information on grading see the National Cancer Institute: Tumor Grade.
Then, depending on the kind of cancer you have, additional tests may include these:
- Molecular and genomic testing to further characterize your cancer. For example, for breast cancer, your cancer will be assessed for estrogen and/or progesterone hormone receptors, as well as genetic mutations in the BRCA 1 and BRCA 2 genes.
- Lab tests on blood and other samples to assess other evidence of cancer activity. Tumor markers such as PSA in prostate cancer are an example. A baseline level of tumor markers is important to compare levels before and after treatment and in follow-up after treatment is complete.
- Testing to see if cancer has impaired organ and other bodily function
Most of these tests are done by analyzing the tumor tissue sample. However, scans are quite common in diagnosing many cancers to determine the cancer location and assess the surrounding tissue. This is important for two reasons:
- Scans can localize the tumor, sometimes incredibly precisely, to define the surgical/radiation field for a local treatment such as surgery or radiation therapy and to minimize the amount of tissue that needs to be removed or radiated.
- Whether the cancer has spread to other areas of the body will affect decisions about whether or not to perform surgery, as well as the extent of surgery. It may also mean using systemic therapy (such as chemotherapy) in addition to or instead of local treatment.
Knowing about your condition is also important for developing a treatment plan. In conventional medicine, the healthcare team will assess your performance status—how well you are functioning physically. Using the Karnofsky Performance Status Scale, they see whether or not and how well you can carry out normal activity and work. Usually, the lower the performance score, the worse the prognosis and the less likely a person will be able to tolerate a rigorous treatment regimen. Though age is factored into treatment decisions, older age should not be an automatic reason to rule out arduous treatment. A healthy 80-year-old may be able to do well with a rigorous treatment regimen compared to a debilitated younger person.
Non-standard Diagnostic Tests
All the tests listed above are fairly standard with a conventional cancer care diagnosis and workup. Integrative oncology clinicians will often assess other measures of health as well as recommend additional testing, such as chemosensitivity testing, in making an integrative treatment plan. For instance, during a cancer work-up, integrative oncologist Dr. Keith Block will look at these factors:
- The pathology of your cancer from conventional diagnostic tests results.
- What you eat and how you care for yourself (your biography).
- Biochemical disruptions that can promote cancer (your biology) such as insulin resistance and inflammation; he may run lab and other tests to measure some of these disruptions. The biography and biology of the person tell him about the environment (also known as the “soil” or “terrain”) hosting the cancer.
- Perhaps advice to bank live tumor tissue to be examined for chemosensitivity testing or perhaps for an autologous cancer vaccine.
- Perhaps targeted molecular testing not only to see if some targeted therapy may be useful, but also to see if there may be some specific nutraceuticals or nutritional supplements to prescribe.
Getting the Diagnosis Right
Many of your surgeon’s or oncologist’s treatment recommendations will be based on what the pathologist finds, so an accurate pathology report is vital. Unfortunately, some people diagnosed with cancer may discover later that the pathology report was wrong—they don’t have cancer. Or perhaps they may have a different cancer than what was diagnosed. One indicator that a diagnosis was wrong is that virtually all treatments that usually work fail to work.
Medical advocate Mark Renneker, MD, advises independent double-checking of all pathological diagnoses of your cancer(s). The second pathologist opinion should be in writing, and not just a verbal report. In general, the best pathologist to give a second opinion about your cancer diagnosis is one who specializes in your particular type of cancer, for he or she will have seen the most variations and false-positive cases. Realize that this pathologist may be in another part of the country or world.
If you’re being worked up for a rare cancer, chances are the pathologist in a community hospital will have less practice in examining this type of cancer. Pathology reports using words such as “borderline”, “inconclusive”, “atypia” or “atypical hyperplasia” are a clue that the pathologist is unsure of the diagnosis. In the case of a rare cancer or uncertainty about the diagnosis, ask (or have your oncologist or surgeon ask) the pathologist to send your slides to a pathologist nationally recognized for expertise in the cancer in question.
If you are not responding to treatment that is usually effective, Dr. Renneker advises to be aware if your doctor has become “anchored” in the diagnosis, which could prevent questioning the original diagnosis. Speak up and question the diagnosis and ask for a second opinion on the pathology report.
Also be aware that even such common, solid-seeming tests as hormone receptor assays can be erroneous, depending on what part of the tumor was sampled, what testing techniques were used and the cut-off values to determine if a result is positive or negative.
References and More Information
Targeted Therapies and Molecular and Genomic Testing in Conventional Cancer Treatment
- Credit: Beyond Conventional Care Therapies
- ZenOnco.io Integrative Oncology Cancer Care
- American Society of Clinical Oncology (ASCO): Assays and Predictive Markers. These guidelines are written for physicians, but they are accessible to anyone who wants to dig deeper to see what is being recommended for conventional oncology diagnostics.
- National Comprehensive Cancer Network: NCCN Guidelines for Patients, guidelines related to specific cancers including a discussion of the testing done to diagnose the specific cancer and determine treatment, including molecular and genomic testing.
- ASCO Cancer.Net: Understanding Targeted Therapy
- Moss Reports (purchase required), especially for testing specific to your type of cancer. Moss provides one of the most thorough discussions and resource list of testing and places to have specialized testing done.
- My Cancer Genome:
- National Cancer Institute: Targeted Cancer Therapies
- Block KI. Life Over Cancer: The Block Center Program for Integrative Cancer Care. New York: Bantam Dell. 2009.
- Lindeman NI, Cagle PT et al. Updated molecular testing guideline for the selection of lung cancer patients for treatment with targeted tyrosine kinase inhibitors: guideline from the College of American Pathologists, the International Association for the Study of Lung Cancer, and the Association for Molecular Pathology. Archives of Pathology & Laboratory Medicine. 2018 Jan 22.
- Roschewski M, Dunleavy K et al. Circulating tumour DNA and CT monitoring in patients with untreated diffuse large B-cell lymphoma: a correlative biomarker study. Lancet Oncology. 2015 May;16(5):541-9.