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When Can I Say I Am a Breast Cancer Survivor?

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Updated September 11, 2009

Question: When Can I Say I Am a Breast Cancer Survivor?

Surviving But Not Cured
It's hard to talk about being a breast cancer survivor, because there is still no cure. Your doctor may say that you are in remission. Others of us can say we are NED - No Evidence of Disease, or we're stable - for those of us that were diagnosed with metastatic disease and are progression-free. The National Cancer Institute defines a cancer survivor this way: "An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included."

Answer:

Survivor: one who remains alive, one who continues to live

A Survivor at Diagnosis
Breast cancer needs time to grow, so when something shows up on a mammogram, or you're doing your monthly BSE 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.

Surviving Treatment and Public Opinion
Debbie, who commented on my blog, told her story of looking for support while only three months out of treatment for breast cancer. She lives in a small rural town, and it has only one general-purpose support group. Eager for answers and advice, and full of ideas, Debbie was shocked when the group's members rejected her, saying, "You are not yet a survivor -- so you are not welcome." Debbie, who does consider herself a survivor, took the group's judgment as a challenge, and has decided to "work tirelessly to change ideas and make heath care and all supporting activities available to everyone."

Trauma and Survival
Barbara, a clinical psychologist, wrote me saying, "In the world of psychology, we generally use the word survivor when we are talking about a person who has undergone trauma. I can think of few things that 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 kinds of medical treatment. The diagnosis, the disease, and the treatment all bring trauma, but we can refuse to be defined by our cancer.

Victim, Patient, or Survivor?
As detection and treatments have improved, women and men who have been diagnosed with breast cancer are living longer. We are not powerless in the fight, and do not have to view ourselves - or be seen as - cancer victims. While we are in primary treatment, we can call ourselves cancer patients or cancer survivors. After treatment, you may feel comfortable saying that you are a survivor - or you may wish to put it all behind you, and move on. Helen, when adding her opinion to the fray, wrote, "You survive the blow to the stomach when you learn you have breast cancer. You survive the surgery, you survive the chemo, and then you survive the 3-month and 6-month checkups. The thing is: You Survive!" Cancer survival is indeed a process, marked by checkups, changes, and sometimes long-term therapies.

You Have The Final Word on Survival
I took a poll of my readers, asking them, "When Do You Become a Breast Cancer Survivor?" I offered them options: at diagnosis, after surgery, at the end of treatment, after your 5-year checkup, or whenever you say you are a survivor. More than half of all responses favored the idea that You are a survivor when you say you are - not based on the opinion of others, not measured by medical milestones, not codified by your culture - but based solely on your own declaration. You may feel comfortable with this - or it may be a stretch for you. I hope that anyone with breast cancer will call themselves a survivor, and that no-one is ever made to feel that they aren't welcome to the club! As Veda Cazzola, of my local Breast Cancer Resource Center told me when I made my first call for help, "You don't join our club because you want to, but when you do, we sure will treat you well!"

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