Understand cancer staging and you’ll know why early cancer detection matters

I have stage 4 cancer.

Actually, it’s not entirely true that I have stage 4 cancer, based on the National Cancer Institute (NCI) explanation:

A cancer is always referred to by the stage it was given at diagnosis, even if it gets worse or spreads. New information about how a cancer has changed over time is added to the original stage. So the stage doesn’t change, even though the cancer might.

National Cancer Institute

My initial cancer diagnosis was stage 2 and my oncologist refers to my current condition as metastatic breast cancer. I named this website Stage 4 Living because it sounds better than Metastatic Living.

What is cancer staging?

Staging describes cancer severity based on the size of the original or primary tumor and the extent to which cancer has spread (or not) in the body. If you are confronting a cancer diagnosis, either for yourself or a loved one, it’s important to understand the stage of the cancer as it will be used to assess a prognosis (the likely course and potential outcome) for the disease and develop an appropriate treatment plan.

The “net net” of this article and the message I want you to take away and remember:

If cancer happens, it’s much better to know sooner rather than later, because in cancer and grading cancer, bigger is definitely not better.

Cate North

Cancers are staged and graded in increments from one to four. Not all cancers are staged. Typically blood cancers like leukemia have spread throughout the body by the time they are found; staging is generally used for tumors, like in breast cancer.

There is a Stage 0, but that applies to cells in a confined area that have the potential to develop into cancer, but they are not yet cancer. Otherwise, it’s all about numbers 1 through 4, and the smaller the better. Ones are localized, less threatening and more treatable than fours. Think of a forest fire: it’s much easier to extinguish if it’s small and contained. An infestation of household insects in one area is much easier to eradicate. A small flock of sheep is no problem for a good Border Collie, just as an early stage, low grade cancer is generally no problem for a good oncologist. I will stop here because I think by now you get the point: Early detection matters because that’s when cancer is small, weak, not yet staking a claim in other parts of the body.

Cancer staging explained

The following describes cancer staging in the most common terms. Note that you might see the numbers as Roman numerals I, II, III, and IV.
Stage 1, Stage 2, and Stage 3
Cancer is present. The higher the number, the larger the cancer tumor and the more it has spread into nearby tissues.
Stage 4
Cancer has spread to distant parts of the body.
About Stage 0
Stage 0 is when abnormal cells are present but have not spread to nearby tissue. It’s not yet cancer, but could become cancer. Stage 0 may also be called carcinoma in situ, or CIS.

Stage 0 would be the best case scenario in regard to cancer, but not for mental health or overall well-being. It could turn into cancer they say, which raises your personal risk factor in a significant way, but it also raises stress levels. And of course if they only “could” turn into cancer, then it’s also possible that they never will, and nobody wants to undergo invasive procedures to treat something that will never invade your body. It’s tricky. Let your comfort zone, a good oncologist, and your health insurance guide your decisions.

When is cancer staging done?

Clinical staging

Clinical staging is done prior to treatment, based on data from procedures like x-rays, scans and biopsy results from blood or tissue samples.

Pathological staging

Pathological staging is clinical staging data plus any new information gained during surgery, such as a mastectomy or lumpectomy for breast cancer.

Post-therapy staging

Post-therapy staging is used when surgery is not the first treatment, but other treatments like radiation therapy, chemotherapy or immunotherapy are given. It’s often done to assess the need and plan for further treatment.

TNM Cancer Staging System

The TNM system—also called the AJCC staging system in the US as it was created and gets updated by the American Joint Committee on Cancer (AJCC)—is used to describe the amount and spread of most types of cancer.

T = Tumor size and any spread into nearby tissue.
N = Number of nearby lymph nodes that have cancer.
M = Spread of cancer to other parts of the body or metastasis.

A person’s TNM staging will include numbers after each letter, like T1N0M0, that give more details about the cancer.

T details

TX: Tumor cannot be measured.

T0: Tumor cannot be found.

T1, T2, T3, T4: Refers to the size and/or extent of the tumor. The higher the number, the larger the tumor or the more it has spread to nearby tissues.

N details

NX: Cancer in nearby lymph nodes cannot be measured.

N0: There is no cancer in nearby lymph nodes.

N1, N2, N3: Refers to the number and location of lymph nodes that contain cancer. The higher the number, the more lymph nodes that contain cancer.

M details

MX: Metastasis cannot be measured.

M0: Cancer has not spread to other parts of the body.

M1: Cancer has spread to other parts of the body.

More staging terms defined

Earlier I explained carcinoma in situ or CIS under About Stage 0, which is the presence of abnormal cells that could become cancerous at some point. Here are some additional terms that may be used by your doctor or included in your diagnosis

Localized—Cancer is limited to the place where it started, with no sign of spreading.
Regional—Cancer has spread to nearby lymph nodes, tissues, or organs.
Distant—Cancer has spread to distant parts of the body.
Unknown—There is not enough information to figure out the stage.

For more details based on specific cancer types, from A (Acute leukemias) to V (Vaginal and Vulvar cancers), this page on the NCI website contains the details in what they call the PDQ® Cancer Information Summaries for Adult Treatment. You can sign up for email updates and also view a version for childhood cancers.)

How does cancer grade fit into the picture?

While stages are the most common way to describe cancer, cancer cells are also graded, also using the numbers one through four. A cancer’s grade describes how cancer cells look under a microscope when compared to healthy cells. Grade 1 looks the most like healthy cells and Grade 4 looks the most abnormal. Grade 4 is more aggressive and likely to spread faster than lower grades. If cancer grading followed standard academic grading, I’d give all cancers a great big red F for failing to behave like normal cells.

Cancer staging: Why little numbers matter

Here’s my advice to the two groups of people I am most focused on reaching and sharing my experience with.

For those of you who don’t have cancer: Understanding staging emphasizes the importance of something you hear all the time: early detection matters. In the event of a cancer diagnosis, I am certain you would prefer minimally invasive treatment and the ability to put it behind you as quickly and easily as possible. That is more likely to happen when cancer is detected early, and cancer is most likely to be detected early through screening and self-monitoring. If something hurts or is otherwise abnormal in your body, you can’t pinpoint a cause, and it doesn’t go away or resolve within a few weeks, see your doctor.

For those of you who are or were a cancer patient: Understanding staging will emphasize the importance of remaining vigilant so you know how serious your cancer is. Once you have completed treatment, before saying Sayonara! and sashaying out of the doctor’s office, I would have a frank discussion of your odds, based on your unique situation, of having a recurrence, which I’m quite certain is something you want to avoid. You can fight the devil you know better than the devil you don’t know, so don’t be afraid to ask. Take comfort in knowing that most properly treated cancers do not recur, yay!

Last word: Please take this seriously. And please, whatever you do, don’t obsess and don’t worry. Worrying is the biggest waste of precious time and energy. Instead of worrying, spend those minutes and hours in prayer, meditation, or taking action—which includes seeking knowledge.