As a patient advocate who provides resources for breast reconstruction, I am paying close attention to the new updated genetic testing guidelines issued by the American Society of Breast Surgeons. The information needed to make an informed decision is multi-faceted. Without providing updated information to the community I serve, those affected by breast cancer, some will remain uninformed.
Being uninformed translates into not being able to have a shared decision-making conversation with any health care provider about genetic testing if you are affected by breast cancer. Being aware of these new updated guidelines can be a pivotal point in your decision to move forward with breast reconstruction or not. Surveillance, surgery, treatment, or future testing are decisions often made based on genetic test results. Therefore, writing about this topic is important to me.
Understanding the Information on Updated Genetic Testing Guidelines
There have been several articles written this week on the topic. One I found to be straightforward and evidence-based is from Dr. Deanna Attai, a breast surgeon and past president of The American Society of Breast Surgeons. You can read her article here.
This becomes personal for me in two aspects. First, I want to provide the clearest evidence-based information to others in my community. Secondly and on a very emotional level, I have been through genetic testing myself. I cannot ignore the statement in my own report from 2016 stating:
It should be noted that the field of genetic testing is constantly evolving. Therefore, additional genetic testing may become available in the future or our genetic testing recommendations may change.
This was from a certified genetic counselor at a leading university medical center I went to for my mastectomy and genetic testing after a second breast cancer diagnosis. It was a difficult decision to move forward with genetic testing. However, I sought counsel from a trusted health care provider, the plastic surgeon who performed my DIEP flap breast reconstruction. We had a shared decision-making conversation about my hesitation to even go through genetic testing. He gave me all the information I needed to move forward and speak with my genetic counselor. You can read more about it here.
These are the most important pieces of information I want to share with the reader regarding the new genetic guidelines.
- Talk to a trusted healthcare provider before moving forward with genetic testing. This could be your primary care, oncologist, breast surgeon, or plastic surgeon to name a few. I would begin the conversation by saying something like, “I know genetic testing guidelines have recently been updated. I want to find out from you what you think next steps should be for me.”
- If your healthcare provider dismisses your concern, hasn’t heard of the new guidelines, or gives you the “eye roll”, move on to someone else who is knowledgeable and can have a shared decision-making conversation with you. You don’t want your concerns to be dismissed. You don’t want to be told what to do but guided what to do based on their expertise and what your personal preferences are. That is what shared decision-making is.
- If you were tested before 2014, ask to see if you need to be re-evaluated after speaking with a genetic counselor. Remember, a genetic counselor should be able to determine, based on your diagnosis and prior genetic testing, whether or not you should have further or more extensive genetic testing.
- Know what the risk factors are for various gene mutations and ask the question when you are with your health care provider. It can affect how you move forward in the future with surgery, treatment, and how it will affect your family members. I had direct conversations with my sons, sisters, and nieces before I had my own genetic testing knowing it could potentially affect them. They were not easy conversations, but we all learned something and felt closer being transparent and honest with each other.
- Know your genetic testing company. I spoke directly to my genetic counselor about two companies they used to send my results to. Based on my personal preferences, I chose which company I wanted to use. She would be reviewing the results with me no matter what company I chose. However, check coverage for insurance costs and what is specific to your diagnostic circumstances, and personal and family history.
We are living in an age of unprecedented growth in genetic testing. As a patient and patient advocate this makes me feel both excited and cautionary. Excited because we can determine what action we want to take for our health and treatment options when affected by breast cancer. Cautionary because the information is changing rapidly in the field of genetic testing. Most importantly, we need to continue to make others aware of these updates and changes in genetic guidelines. These conversations are important.
I hope this offers some insight into the headlines this week on the new genetic testing guidelines from a patient advocate’s perspective.
This is what is so very important for each patient to find, a trusted source to empower you to make your own best decision. ~ Terri Coutee
Thank you so much Terri for this important information and for keeping us informed. 🙏❤️