How long should a cancer diagnosis take?

Patients are frequently frustrated by the length of time it can take to get a clear cancer diagnosis. They are left in limbo and fear since they know something is wrong, but not exactly what and therefore can have no plan of action.

Often the first signs of an abnormality are non-specific and difficult to pin down or identify:

• Cancer may present with fatigue or weakness only, which everyone experiences at one time or another.
• There may be non localized pains, a nagging cough, a small lump or other signs and symptoms that aren't pursued initially or take some time to find. It is not uncommon for weeks to elapse from initial symptoms to the start of the diagnostic work up.
• Some cancers, for example early colon cancer, can have no symptoms at all, and only be discovered incidentally or by screening (colonoscopy).

Once an abnormality is found, further laboratory tests or diagnostic imaging are usually used to further evaluate it:

• These tests often take a day or two to run (clinical lab tests), or several days to schedule and perform.
• Then a biopsy (in the case of a solid tumor) or blood sample (in the case of leukemia or lymphoma) is usually taken. A biopsy of a solid tumor such as a breast biopsy is usually performed by a radiologist or surgeon and this can take days or weeks to schedule.
• Once the biopsy is performed it goes to the Pathology laboratory for analysis to determine if it is cancer, what type exactly and what prognostic features it has. This usually takes 1-3 days of work and may entail sending the biopsy specimen to other specialized labs to detect specific features that may determine which kinds of treatment are appropriate and this could take additional days or even weeks. Every tumor in every patient is unique and some are very difficult to diagnose based on current medical science and could require the review by a pathology specialist who studies only one kind of tumor. There may only be a few of these specialists in the country and this kind of review could take additional days or weeks. For more information visit, The Pathologist's role in cancer diagnosis and care >>
• Once the diagnosis is made, evaluation by oncologists is necessary to determine the exact type of treatment necessary. These appointments can take days to schedule and more than one opinion is often necessary to get the plan solidified. Sometimes a particular treatment (eg. neutron beam radiotherapy) is only available in a few places in the country and getting into these treatment facilities can take days or weeks. For more information visit, Cancer: What's in a diagnosis?

Thus it takes quite a while to get a diagnosis and get started with the best treatment. Fortunately most cancers are quite slow growing and have often been present in the patient for years prior to diagnosis and so a few weeks delay usually has no outcome consequence, but delays are clearly associated with emotional stress and turmoil.

Although it may not feel like it, your team is working very hard to get a timely and accurate diagnosis for you. However, as with all your health care decisions, if you ever feel as though you are falling through the cracks, speak up.

You might also like:

• Scientifically speaking, what is cancer?
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All cancer is genetic, but few cancers are inherited

Editors Note: We realize the content of this article is incredibly scientific. However, we strive to bring you the most factual information we can and in this case all the information provided helps to paint a complete picture of Dr. Whitten's article.

If you have questions please don't hesitate to comment.

All cancers have genetic abnormalities. This means the cancer cell’s DNA or genes (which reside in the chromosomes) show alterations. In some cancers it seems to take only a single change to cause the cancerous growth.

For example, one type of leukemia (chronic myelogenous leukemia, or CML), shows a characteristic break between two separate chromosomes with abnormal joining of part of one (chromosome 22) to part of the other (chromosome 9) creating a new abnormal fused chromosome (the famous Philadelphia chromosome).

This break and reconnection brings together, or fuses, two normally separate genes that now behave abnormally, creating uncontrolled cancerous cell growth.

What does this mean, exactly?
All cancers have genetic abnormalities in the cancer cells themselves, but the person who has the cancer does not show these abnormalities in any other cells of their body including their germ cells (eggs and sperm), so they are not passed on to future generations or inherited.

What about the “breast cancer gene”?
There are uncommon hereditary cancers, however. Abnormal genes that were present in the parent’s eggs or sperm can mean an individual inherits an increased risk to develop cancer.

An example is the famous BRCA-1 mutation that increases the risk of breast, ovarian and other cancers in those who inherit a mutated BRCA-1 gene. All cells have 2 copies of every gene and if one inherits mutations in both copies of an important gene like BRCA-1, then the embryo usually does not survive and is spontaneously aborted early in pregnancy, often before the mother knows she is pregnant.

If one inherits a mutation in only one of the copies of the gene then the embryo lives, but has an increased risk of problems such as developing breast cancer in the case of BRCA-1. Most breast cancers do not occur in patients with this hereditary risk, but if you do inherit a mutation in BRCA-1, then your risk is many times higher that you will develop breast or ovarian cancer in your lifetime. That is, most breast cancers arise in patients without a hereditary BRCA-1 mutation or other family history of early or frequent breast cancer.

Another example is an inherited mutation in one of the copies of a DNA repair gene (one that fixes mistakes that invariably occur during copying of DNA to make a new cell) that is inherited and leads to an increased lifetime risk for colon cancer called the Lynch syndrome. Like the BRCA-1 situation, this inherited risk accounts for only a small fraction of all colon cancers (15%), but if you have this mutation, your lifetime risk is much higher than someone who did not inherit the mutation.

What do I do?
If several close family members have developed these cancers at unusually young ages (that is you have a family history of these cancers), then you may carry one of these mutations. Laboratory tests are available to look for the BRCA-1 and Lynch syndrome mutations and several others that are known to lead to an increased hereditary risk for cancers. Talk to your doctor about the appropriateness of genetic testing and counseling for your individual situation.

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The Pathologist’s role in cancer diagnosis and care

Pathologists are physicians who specialize in diagnosing and characterizing disease through scientific analysis of a patient’s organs, tissue, blood and body fluids.

A pathologist is responsible for a person’s initial cancer diagnosis including:

• Exactly what type it is
• What its particular features are (contained in the pathology report)
• What the prognosis is

Pathologists also manage hospitals and private laboratories. Occasionally we do autopsies but most pathologists are not forensic pathologists, like those portrayed on television shows such as CSI.

The life changing diagnosis of cancer usually starts with symptoms that a primary care provider suspects may be cancer, such as a lump or tumor, weight loss, severe fatigue, blood in the stool, changed blood test results, etc. A biopsy of the tumor is taken by a surgeon or radiologist and sent to the pathologist who analyzes it and decides (through a series of scientific tests) what it is.

Understanding your pathology report
The pathology report contains several things:

• The overall diagnosis (e.g., breast carcinoma, infiltrating ductal type)
• Descriptions of all features including:
    * Subtype
    * Degree of spread
    * Invasion of tumor into blood or lymphatic vessels
    * Growth rate
    * Grade or how much the tumor resembles its normal tissue of origin, stage, etc.

These detailed reports are written primarily for other doctors (which is why pathologists are sometimes called the Doctor’s Doctor). However, our group of CellNetix pathologists are happy to take calls from patients to help them understand the reports. In fact, I highly recommend patients ask their primary healthcare provider for a copy of their pathology report.

Every line item in that report is critical for your personalized treatment plan. In fact, more than 70 percent of the decisions made about your health care involve pathology and your lab report. Source. Knowing the details of the diagnosis helps when talking to other healthcare providers, family and friends and when searching the internet for information.

CellNetix office phone numbers:

• Aberdeen 360.537.0562
• Centralia 360.827.6800
• Olympia 360.493.7330
• Seattle 206.386.2676

Scientifically speaking, what is cancer?

A tumor (swelling) is caused by uncontrolled growth of cells starting in a particular organ in the body. Almost all tumors arise from a single cell that has lost growth control and makes a colony or clone of cells that are initially identical.

There are two main categories of tumors: Benign and malignant. Benign tumors are less aggressive, usually don’t invade into tissues that are not their normal residence and don’t metastasize or spread to distant tissues or organs through the vascular systems (lymphatic and blood vessels). Malignant tumors are defined by their ability to invade and metastasize causing significant illness and death. They usually need treatment to remove or destroy them.

Cancer is a general, sometimes imprecise term for a malignant tumor. There are hundreds of different kinds of cancers, and each is a distinctive disease. Malignant tumors are characterized and classified by the location in the body where they start:

• Carcinomas are tumors of epithelium (more below)
• Sarcomas are tumors of supporting tissues (bone, connective tissue, fat, blood vessels, etc.)
• Leukemias are tumors of blood cells
• Lymphomas are tumors of lymph node or blood cells
• Central nervous system tumors originate in the brain.

Carcinomas are the most common tumors in adults (e.g., breast, colon, prostate, lung cancers), and start in the organs that are mostly made up of epithelial cells. These are cells of specialized function that define the organ (for example carcinomas of the skin are malignant tumors arising in the epithelium of the skin, or the epidermis – the covering that is the main functional part of the skin).

Cancers usually arise spontaneously or sporadically (“out of the blue”), but rarely an increased cancer risk can be inherited. The cause of most cancers is unknown, but some are caused by viruses (cervical cancer, liver carcinoma, and a few others). It is thought that exposure to certain chemicals, or excessive radiation can cause cancer, but in only a few instances are the exact causes understood (e.g. smoking is clearly a major cause of lung cancer and increases the risk for many other cancers).

Editor's Note: If you receive a diagnosis of cancer continue to talk with your doctor until what you are hearing makes sense to you. Don't be afraid to ask as many questions as you need to, regardless of how long it takes. Understanding your personal diagnosis is a powerful tool in your survivorship journey.

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