Cancer affects everyone differently, including weighing on the physical, mental, and emotional levels- no matter where you stand in the journey. This is true for the cancer patient, their friends, their families, their medical care teams- and most importantly, those “previvors” who will now face a heightened risk for cancer due to the possible inherited gene mutation that has been linked to cancer. A previvor is “someone who has an elevated predisposition to being diagnosed with cancer due to a risk running through their family” (Webster).
In many families, there is a genetic predisposition for cancer. For those who do have this predisposition, this does not mean that they will one hundred percent get cancer of any kind- but that in itself does not negate the feelings of worry and wonder for their future. Many previvors are not even aware about their heightened risk factors for cancer because this link still has not yet been found in their bloodline. Others tend to suspect there is a predisposition to cancer when multiple blood-related family members or their family history shows many diagnoses.
Genetic Testing for Previvors
Many people are curious about genetic testing when it comes to a family history of cancer, although many people do not need this testing. You doctor can advise you if genetic testing is necessary for your situation.
The American Cancer Society lists some of the reasons that someone may need to consider genetic testing. These include:
- A close relative with cancer (mother, father, sister, brother, son or daughter)
- Several members on one side of your family (father or mother’s side) with the same type of cancer, or with cancers that may be linked to a single gene mutation
- A family member with more than one type of cancer, with a rare cancer, or who developed cancer at a younger age than typical for that particular type
- An ethnic background (such as Ashkenazi Jewish ancestry) with a known hereditary link to a cancer syndrome, or a close relative with a cancer that’s connected to a hereditary cancer syndrome
- A physical condition linked to an inherited gene mutation
If there is a reason to suspect a cancer syndrome runs in your family, the best person to be tested first may be the relative who has or has had the cancer, which will help to determine whether he or she has an inherited variant for that type of cancer.
Types of Inherited Cancer Syndromes
Throughout the past few decades and with more research being done on cancer and it’s many syndromes and side effects, the list of confirmed cancer syndromes is as follows:
- BRCA1 and BRCA 2 hereditary breast and ovarian cancer syndrome (HBOC)
- Diaphyseal medullary stenosis with malignant fibrous histiocytoma
- Duodenal carcinoid syndrome
- Endolymphatic sac tumor
- Familial adenomatous polyposis (FAP)
- Familial isolated pituitary adenoma
- Gardner syndrome
- Hereditary diffuse gastric cancer
- Hirschsprung disease ganglioneuroblastoma
- Langerhans cell histiocytosis
- Li-Fraumeni syndrome
- Lynch syndrome
- Multiple endocrine neoplasia (type 1, type 2A and type 2B)
- MYH-associated polyposis
- Oslam syndrome
- Paraneoplastic neurologic disorders
- Perlman syndrome
- Stewart Treves syndrome
- Von Hippel-Lindau disease
- WAGR syndrome
These are all linked to inherited mutations in the DNA, thusly leading to some type of cancer. These listed syndromes can happen with or without cancer, although many of these syndromes trigger various types of cancer growth.
Previvor Questions for Your Medical Care Team
If you are a cancer previvor, consider taking this list of questions with you to your next appointment as you learn the best way to be proactive about your health care.
- When is the right time to begin cancer screenings, such as colonoscopies for colorectal cancer previvors or mammograms for breast cancer previvors? How frequently should they be performed compared with standard screening recommendations for people without a hereditary mutation?
- How should a newly diagnosed previvor handle telling family members of their possible risk, especially if it involves a person who may prefer not knowing or if it may produce fears of having passed the gene onto a child?
- How expensive are the genetic tests, and does my insurance company cover such predictive testing?
- Are many additional tests needed after a faulty gene is detected?
- If the hereditary mutation is connected to a gynecologic cancer, how may that affect a woman’s fertility?
- Are there support groups available if I decide to undergo a double mastectomy and have breast reconstruction surgery?
As a previvor, it is important to maintain your health and health care needs. Be sure to let your doctors know when an immediate family member has had a cancer diagnosis, giving them the details they will need to add it to your own medical records. By embracing your previvorship, you acknowledge your heightened risk factors for cancer, and can move forward with your life knowing you are prepared for the “if” and the “when.”
Cancer Treatment Centers of America