Once risky genes have been confirmed, earlier screening will be recommended to ensure any cancer that may develop is caught early. Your medical professional will also discuss preventative options to reduce your risk of cancer. Recommendations may vary slightly depending on where you live.
Cancer screening will not actually reduce your risk of cancer, but the goal is to find a cancer as early as possible, when treatment is likely to be most effective. This may include:
- practicing self-awareness
- breast screening
- abdominal exam
- ovarian screening
- prostate exam
- cervical exam
Ask your medical professionals for more specific information about the screening options available for your situation.
Cancer Risk Reduction
There is a large body of evidence to support that regular exercise and reducing input of toxins and increasing intake of healthy foods will reduce your risk of cancer, whether or not you have a hereditary predisposition.
In some cases, chemoprevention may be suggested in the form of a drug that can be taken to reduce your risk of getting cancer (e.g., tamoxifen). There are side effects from all drugs, so ensure you weigh the risks with your medical professionals.
Preventative (Prophylactic) Surgery
The most effective, and controversial, risk-reducing strategies are in the form of prophylactic (preventative) surgeries. For women this could mean removal of both breasts (double-mastectomy) and related reconstruction, and removal of the ovaries (and fallopian tubes). It may also mean a hysterectomy and removal of the top of the cervix, depending on your risk factors and your doctor’s recommendation.
Be Your Own Advocate
Having risky genes is complicated and far reaching, requiring visits to many different health professionals over a period of many years. Typically, someone with risky genes will see several or all of the following through their screening and prevention journey or in the event of a cancer diagnosis. This makes it important to have genetic testing early, so there is plenty of time to consider fertility issues, make important decisions regarding prevention and have the time to carry them through.
- General Practitioner – initial criteria assessment and referral for genetics testing
- Genetics Professional – assessment / testing / results
- Imaging Specialist – screening
- Fertility Specialist – fertility options and risks
- Oncologist – chemoprevention and/or chemotherapy
- General / Oncology Surgeon – biopsies / mastectomy / other cancer removal surgery
- Plastic Surgeon – reconstructive surgeries
- Gynaecological / Oncology Surgeon – ovary / fallopian tube / uterus / top of cervix removal
- Menopause Specialist – symptom relief
- Psychologist – family and/or partner issues and/or lack of support / body image / concern for children / other
Risky genes are not often well understood, even within our medical communities. Here are some tips to help you ensure you are receiving the best care possible:
Knowledge is power
Do your own research, making sure to stick to reputable websites and organizations. Keep up on the latest news and research findings.
Take someone with you to key appointments
Many of the appointments are difficult and overwhelming, so bring along a relative or friend. It is not always possible to absorb everything being said, so a second set of ears is extremely helpful and also provides emotional support.
Purchase a notebook small enough to carry to every appointment. Write down questions for the doctor beforehand and write down all answers. Again, if possible ensure a second person is taking notes as they will not be as emotionally overwhelmed, so will be less likely to misinterpret or miss something.
Ask for a copy of your medical records
Everyone has a right to their medical records. Periodically reviewing your history may help to connect the dots between different doctors and appointments. Having your notes and health records available when you visit a new doctor or when you need to provide your health history prior to surgery or for other reasons means you don’t have to rely on memory alone so will reduce omissions and errors.
If something doesn’t feel right question it. It is ok to say no, even to your doctor.
Get a second opinion if possible
Actress Rita Wilson was recently diagnosed with breast cancer on a second option. Had she listened to the first opinion it may have cost her her life.
We Get It
Research suggests that being told you have risky genes is as traumatic as hearing that you have cancer. For those of us that have risky genes and also have had cancer, we know that to be true. Part of what makes learning we carry risky genes so difficult is that it’s then not just about us. We worry for our family, especially our children. For those of us who don’t have a life partner or children yet, there is the added devastation of facing decisions around fertility and wondering how this will all affect our romantic relationships.
We are here! You aren’t alone! We’ve been in your shoes and are here to tell you there is life beyond what you are going through today. You can make a difference in your own life and for others! We want to meet you!