When Can I Say I Am a Breast Cancer Survivor?

You Determine When You're a Survivor

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When are you called a breast cancer survivor?. Hero Images/Getty Images

You've likely heard many people talk about being a breast cancer survivor. If you've been diagnosed with cancer, when can you call yourself a survivor? If you are going to celebrate your survivorship anniversary (coined your "cancerversary") when do you have the party?

When Are You a Breast Cancer Survivor?

If you have been diagnosed with breast cancer, you are already a survivor. According to the National Cancer Institute, a person is considered a survivor on the day that they are diagnosed and throughout the rest of their life.

What is Your Cancerversary (Your Cancer Anniversary)?

You may see people post on Facebook that it is their three-year or five-year anniversary with breast cancer. How is this date determined? 

In actuality, this date can be arbitrary and depends on how a particular person or particular oncologist defines this. Some people celebrate the anniversary of the day they were diagnosed. Perhaps the most accurate date describing a cancerversary is the date at which definitive treatment for their cancer ended.

For example, if you have surgery alone for breast cancer, your surgery date may be your cancerversary. If you have positive nodes and have chemotherapy, the day you finish chemotherapy may be considered your cancerversary.

Defining a date can be difficult if you have metastatic breast cancer, for which treatment is ongoing. In a situation such as this, many people celebrate survivorship beginning with the day they were diagnosed.

Categorization of Cancer Survivors

Many cancer organizations find the current definition of cancer survivorship too broad. The definition of cancer survivor lumps those who have just been diagnosed and those who are 20-year survivors into the same group. Not all "cancer survivors" are alike.

To make where someone is at in their cancer journey a bit clear, we are now hearing different "functional" terms.

For example, those who are "acute" survivors (newly diagnosed) and those that are long-term survivors. There is also an area in the middle in which people have had their cancer for some time but are still in either active treatment, or receiving maintenance or preventive (prophylactic) treatment.

The following table lists some of these categories which attempt cancer survivors down into similar categories:

Categories of Cancer Survivors
Category of Survivors Description
AcuteIncludes people (survivors) at the time of diagnosis or when a cancer recurs (relapse.) These people are in need of active treatment of their disease.
ChronicIncludes people (survivors) with cancers which are slowly progressive or have cancers that go through periods of remission followed by relapse. Quality of life is usually fairly good.
Long-term survivorsIncludes people (survivors) who have been in clinical remission for a long period of time but who remain at risk for distant relapse or second tumors. This category includes people who may experience long-term treatment-related physical or emotional side effects
CuredA person may be called cured if the chance that they will die from cancer and their overall life expectancy is the same as someone of the same age and sex in the general population.
  

Why Do Oncologist's Rarely Use the Word Cured? 

Most people who are cancer survivors will fall into the first three categories, as oncologists will rarely use the word "cured" for people with solid tumors, even if a cancer was in the very early stages of the disease. (Learn about why doctors rarely use the word cured.) Your doctor may say you are in remission or that you are NED (no evidence of disease) but with breast cancer the term cured is usually reserved for those with DCIS.

We don't understand how breast cancer can hide and  come back years or even decades later. Yet we know it does—far too often.

Why are You a Survivor at Diagnosis?

Breast cancer needs time to grow, so when something shows up on a mammogram, or you're doing your monthly self-breast exam and notice something different, most likely your breast mass has been lurking there for longer than you'd like. Breast cancer doesn't suddenly blossom when you have your mammogram or breast biopsy—so when you're diagnosed, you've been living with it for a while. In that sense, you're a survivor right away.

Trauma and Survival and Posttraumatic Stress

In the world of psychology, a survivor generally refers to a person who has we undergone trauma. There's no question that few things are as traumatic as being diagnosed with breast cancer. Everyone who has been diagnosed with breast cancer has had to endure emotional upheaval as well as some kind of medical treatment. The diagnosis, the disease, and the treatment all bring trauma, but we can refuse to be defined by our cancer. Learn more about post-traumatic stress disorder and post-traumatic stress in people with cancer.)

Victim, Patient, or Survivor?

As detection and treatments have improved, women and men who have been diagnosed with breast cancer are living longer. While in primary treatment, people can refer to themselves as cancer patients or cancer survivors. After treatment, many feel comfortable saying they're survivors, while others may wish to put the experience behind them and move on. Cancer survival is indeed a process, marked by checkups, changes, and sometimes long-term therapies.

PostTraumatic Growth - How Cancer Changes People in Good Ways!

Cancer treatments can certainly lead to any number of side effects that cancer survivors need to face. Yet amidst the scars from surgery, the hair loss from chemo, and the hot flashes from tamoxifen or aromatase inhibitors, there can be silver linings. Research is now showing us that  cancer changes people in good ways as well as bad. There are silver linings in survivorship.

Your Friends and Family are Also Survivors

In talking about being a survivor, it would be amiss to exclude those people who have supported you in your journey. Family and friends are impacted tremendously by your diagnosis and are survivors themselves.

Being a caregiver for someone with breast cancer can be almost as difficult as facing the disease yourself. Some survivors have commented that it may be even worse. We can't forget the friends, family members, and spouses behind those pink ribbons.

Cancer Survivorship

For those who have been diagnosed with or are living with cancer, we are living at a good time. The concept of cancer survivorship—moving past a diagnosis of cancer with all that means and back into a life with your "new normal—is fairly new.

Even though treatment is finished, many survivors feel a letdown. It is frightening to finish treatment! While you are going through surgery, chemotherapy, or radiation therapy, you are likely supported and surrounded by loved ones not to speak of being in close touch with your medical providers. When that ends you can feel a lot of fear and even a sense of loss.

For most people, their bodies are not the same. Cancer fatigue may continue for years, and studies tell us that a significant number of people are left with chronic medical or emotional concerns following treatment.

Even with these advances, many people feel abandoned when active treatment is through. It's like there's an unspoken word which states, "You survived, be happy, now go and have a good life." Not only do many people have no idea what that is supposed to look like, but they are left wondering how they are going to cope with the residual effects of the treatment.

For this reason, cancer survivorship is the newest frontier in managing cancer following treatment. Cancer rehabilitation is now making a difference for many people. A breast cancer herself, Harvard physician Julie Silver has created the Star program for cancer survivors. There are now many programs available throughout the United States. If you have finished treatment - or will in the near future - talk to your doctor about the possibility of rehabilitation so that your "new normal" can be a better new normal.

Celebrating Your Survivorship

Whether you call yourself a cancer survivor or not, it can be helpful to set a date for your cancer anniversary. We mark many milestones in our lives, from the day you got your driver's license to your graduation from college. Setting aside a date doesn't mean you have to go back there or identify as someone with cancer. Instead, it can be a date in which you celebrate the strength you never knew you had and the endurance you only dreamed of prior to treatment.

You Have The Final Word

Returning to our initial question, "when are you a cancer survivor" what is the verdict? Whatever you call yourself, and whatever date you wish to set aside as your anniversary is all up to you. The final word is yours.

Sources:

Bell, K., and S. Risovski-Slijepcevic. Cancer Survivorship: Why Labels Matter. Journal of Clinical Oncology. 2013. 31(4):409-11.

Surbone, A., Annunziata, M., Santoro, A., Tirelli, U., and P. Tralongo. Cancer Patients and Survivors: Changing Words or Changing Culture?. Annals of Oncology. 24(10:2468-71.

Surbone, A., and P. Tralongo. Categorization of Cancer Survivors: Why We Need It. Journal of Clinical Oncology. 2016. 34(28):3372-4.

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