Creating More Previvors
I recently came across an article where the author was telling the story of his wife and his daughter. The gentleman stated in his article that his daughter was a previvor and his wife should have been. This is because his wife found out that she had a genetic mutation AFTER she was diagnosed with cancer, a cancer that took her life. Because they found out about his wife’s genetic mutation, his daughter underwent genetic testing. This testing found her mutation BEFORE she was forced to face a cancer diagnosis. This is now a diagnosis she may never face because of the steps she has taken.
What is a PREVIVOR? It is someone who finds out that they have a genetic mutation, which makes them have a predisposition to a certain cancer(s). This person then takes action to reduce or eliminate the chance of that cancer occurring before it develops. Sometimes the risk can be eliminated by prophylactic surgeries. At other times, early screenings can help detect a cancer when it is in a very early stage and easily treated and not life-threatening. It has been known for a long time, that early detection saves lives, but for some these early screenings must start at a younger age than the age recommended for the general public.
Cancer care has generally only been thought of as a patient being in treatment or being a survivor. However, as knowledge is power, preventing cancer should be a huge part of cancer care. Creating more previvors adds a new dimension to cancer care that we do not tend to think about. The phrase “previvor” was coined in 2000 and here we are, over two decades later, and still there are so many that do not have a clue what this phrase even means.
At The Breast Center, we assess every patient’s need for genetic testing. A family history of certain cancers and the age of diagnosis of these cancers can indicate a higher likelihood of a genetic mutation being involved. We use the National Comprehensive Cancer Network, United States Preventative Services Task Force and American Society of Breast Surgeons guidelines to evaluate whether the patient meets criteria. If they are deemed to be appropriate for genetic testing, pre-genetic testing education is provided, then the patient’s blood is drawn and sent to the genetic testing lab. We have qualified staff at The Breast Center to provide post-genetic test counseling to those found to have a genetic mutation.
To meet the guidelines for genetic testing, a patient would have a personal history of:
- Breast cancer at any age
- Ovarian cancer at any age
- Metastatic pancreatic cancer at any age
- Colorectal or endometrial cancer under age 65
Or a family history of:
- Breast Cancer under age 50
- Two breast cancers in one relative at any age
- Ovarian, metastatic prostate, pancreatic or male breast cancer at any age
- Colon, rectal or endometrial/uterine cancer diagnosed under age 50
- A first or second degree relative with a known pathogenic mutation
- Three breast cancers on one side of the family
At The Breast Center, we have identified patients with a genetic mutation as young as age 19. This allowed these patients to start cancer screenings that would not be recommended for decades under standard screening recommendations. Unfortunately, without these early screenings and prophylactic measures these patients might be diagnosed with a cancer when it was too late for effective treatment.
Now, I know some may be thinking, doesn’t a person knowing that they have a genetic mutation create undue stress? Individuals who have a strong family history of cancer and particularly certain kinds of cancers are already worried. Uncertainty does not empower them to do anything. Being equipped with the knowledge of their risk, and the options of treatments and screenings, empowers them to take control of their previvor care. In the words of the American Geneticist Mary-Claire King, PHD, “To identify a woman who is a carrier only after she develops cancer is a failure in cancer prevention”.
Let’s create more previvors!!!!