BRCA POSITIVE- Now What?
So you have just been identified as a previvor; you have tested positive for the BRCA gene and are at a high risk for breast cancer.
You feel overwhelmed and panicked and don’t know what to do with this information.
Here you will find:
*Helpful steps to take
*Questions to ask your doctor
*Tips on managing stress
Due to a significant history for breast cancer in my family, I underwent genetic testing when I was 24 years old which revealed that I have a BRCA1 gene mutation.
Individuals with a mutation to the BRCA1 and BRCA2 genes are at a greater risk for developing breast cancer and ovarian cancer compared with the general population. ⠀
The BRCA genes (BRCA1 and BRCA2) are responsible for suppressing tumor growth. Mutations in these genes can result in inherited breast cancer.
When I received a positive test result, I met with a genetic counsellor who explained that I had very high chance of developing breast cancer. I had just finished teacher’s college, was preparing to move to London, England to begin my career and was not ready to think about the serious implications of this test.
Although I was not ready to take action I knew I wanted to have a prophylactic (preventative) double mastectomy. My plan was to wait until I was secure in my career and had children so that I may breast feed.
Even though I decided almost instantly that I wanted surgery, I was terrified and stressed! I spent HOURS researching surgery and reading many breast cancer studies- it seemed that the more I researched the less I knew, and the more overwhelmed I became!
It seemed like no one understood how I felt; it was such a felt helpless feeling. I desperately wanted to connect with other BRCA carries which is why I have shared my journey in such detail.
What do to after Learning you have a BRCA Gene mutation
- Seek out the advice from at least two genetic oncologists and other medical professionals.
- Do your own research.
- Connect with other BRCA carriers and seek out programs for support.
- Have a doctor teach you how to conduct a proper self breast exam
- Advocate! Advocate! Advocate! DO not allow any concerns to be dismissed or ‘monitored’ over a long duration. You have been identified as high risk and should be monitored closely and be made a priority always
Looking back on my experience as a Previvor
I was not educated enough and relied too much on what medical professionals were telling me.
Also I focused too much on researching preventative measures and I wish I had educated myself about breast cancer itself (specifically long term effects of having cancer).
I say this because when you are identified as BRCA positive, panic sets in and your mind can go to the worst case. Personally my mind went to here, to the most extreme case- I could get cancer and die. This thought made the risk seem less likely in my mind, and in turn, sometimes allowed me to dismiss it.
I believe if had known more about what having breast cancer would mean for my future I would have acted sooner to have a preventative mastectomy.
To learn more about this see my article on the previvor, titled Dear Previvors.
10 Questions to Ask a Specialist about The BRCA Gene & Breast Cancer
Below are a list of questions to help you gain information about your risk as a BRCA carrier when meeting with genetic counsellors and/or oncologists:
- How is my risk for breast cancer being calculated?
- Do I have a predisposition for other cancers?
- What will high risk screening look like in my case?
- When will screening begin?
- How will concerns be monitored?
- Is a mastectomy my only option for prevention?
- What will be my risk post-surgery?
- If I go forward with a preventive surgery, when should I have this procedure?
- Can I prevent my children from inheriting this gene, what options are available?
- Are these options funded?
- If you were me, what actions would you take in terms of prevention?
- What supports are available to me as a BRCA carrier?
- Can you connect me with these supports
- Should I wait to have children? How does pregnancy impact my risk?
- What factors put me at a greater risk?
- Do you recommend anything for prevention?
- Is it safe to take birth control?
- How does dense breast tissue impact screening and early detection?
- What are the long term effects of being diagnosed with breast cancer?
- What are the long term effects of treatment on my quality of life?
- Will treatment put me at risk for other health concerns?
I know too well the stress that comes with being a previvor and that education isn’t enough to calm nerves. Below are strategies that helped me to managing the stress that came with a positive BRCA test and being of high risk for developing breast cancer.
Managing Anxiety & Prevention Planning as a Previvor
Things that eased my anxiety at the time were:
- Educating myself about prevention, BRCA gene and breast cancer
- Learning how to do a proper self breast exam
- Knowing that I did not have to pass on my gene mutation to my children through the process of IVF and embryo selection
- The fact that I would be having breast screening early
- Speaking openly about my concerns and plans with friends and familly.
My advice is to educate yourself, see what programs are available in your area and reach out to other BCRA carries and find yourself a breastie asap!
Feel free to contact me!