1. All deleterious gene mutations are difficult to reconcile: BRCA, Lynch syndrome, Cystic fibrosis, Li-Fraumeni’s, Cowden’s, FAP, etc. While the syndromes differ, there are many parallels between them emotionally and physically. Having any of these horrible gene mutations is a huge emotional, physical, and financial burden.
2. Some of the greatest souls I have met in the world are other cancer advocates. They are the one’s who give a voice to these unique communities and put their hearts and souls into their work for very little in return. They know what it’s like to lose someone to cancer, to have / or had cancer and have boundless empathy for others. They simply want to help lessen the misery in the world.
3. Not everybody with a genetic mutation is fortunate enough to have the emotional support of his or her family. Sometimes family members prefer to not to know whether or not they hold the mutation and bury their heads in the sand, even though they may be carriers themselves; or, some people many have no support because they have already lost many members to cancers. Those that do have supporting, caring, loving family and friends are more fortunate than they realize. Many people are living without much needed family support and it is tremendously sad.
4. Your genes do not have to determine your destiny; take care of yourself, get healthy, eat well, exercise, besiege yourself with positivity and people who are willing to lift you up — stop making excuses.
5. Prophylactic surgery in order to prevent malignancy to your organs may hold tremendous, life-altering consequences for you. Try to become your greatest advocate and educate yourself, talk to others, and ask your doctors many, many questions. Many doctors tend to hold a “one size fits all” approach to medicine and this can be a big problem. Every person is unique and so should be his or her treatment.
6. There are many patients advocates out there willing to help you. They can help find the resources you need to help you get genetically tested, find you doctors, psychologists, or even just provide great reading material for you. We are fonts of knowledge and are here to help you as much as possible. Reach out to us. Hint: if you’re on Twitter, “search” the syndrome of interest and you will most likely find the top advocates for your topic.
7. Advocacy must be tailored to fit various groups. Again, the “one size fits all” approach does not work. For example, some women with a family history of BRCA within the Jewish community are reluctant to get tested before marriage. Cultural issues play a huge role in how/when/why a group goes about being genetically tested.
8. You will come to terms with the diagnosis and learn a new normal. You will no longer take your days, family, or friends for granted.
9. The most challenging times of the year will be: holidays, birthdays, when milestones are reached, or when it’s close to annual testing and screening.
10. You must look inward for the strength you need; no one will be able to provide that for you but yourself.