Facing hereditary cancer with FORCE

For two days last week I was surrounded by attendees at the FORCE, Facing Our Risk of Cancer Empowered, conference in Orlando. The topic of discussion was hereditary cancer, primarily those living with the BRCA 1 and 2 mutations that cause breast and ovarian cancer. This year there are around 600 gathered from around the world (12 countries) to explore topics related to living with the hereditary cancer experience: risk, surgical options, surveillance, advocacy, and talking with family. It's only at this conference that you hear the term "previvor" for those women and men who carry the BRCA mutations but have not had cancer – primarily because of the preemptive strikes of hysterectomy and bilateral mastectomy.Family dynamics were everywhere at FORCE because someone in the family had to be the first one to learn of the mutation, and then he or she had to decide what to do with the information. While that may seem to be a fairly clear issue to most readers, it's one that can be extremely complicated by family dynamics, history, insurance, and fear.In some instances the mutations have drawn families together to learn more for themselves and their children. In other instances, the mutation becomes the family secret – a secret that can kill. More than once I heard someone ask what to do when a family member refused to admit to themselves or have a child tested when he or she was positive for a mutation. At the networking lunch I sat with two different groups. The first table was parents with BRCA mutations who were discussing how they told their children – or didn't. One mother, who carried both BRCA 1 and 2, broke my heart. She had known since her diagnosis of breast cancer at age 34 that she carried the mutations. At the time of her breast cancer, her daughters were 1 and 3. They are now 17 and 20 and she still has not told them. She sat and listened to the other mothers talk about the reactions from their children, and it was clear to see that she was terrified how her daughters would react to the news that they had a 50 percent chance of carrying the mutation, and that would mean choosing to lose their breasts and having a hysterectomy to ensure they would not get cancer. Imagine trying to tell your daughters this news when they are dating or falling in love and then they have to pass the news along to their potential husband. She had come to the FORCE conference to get help and was going to attend a workshop on telling children that afternoon. Janet, a breast cancer nurse at the time of her own breast cancer diagnosis, was tested for the mutation because of her relatively young age at diagnosis. When the results came back positive, her mother immediately said it was her father who was to blame since there was cancer in his family not hers. Janet was shocked, as was her younger sister, and both were angry with their father who knew there was "woman" cancer is the family but never thought it was anything to talk about. Her sister has still not forgiven him. Janet has told her daughter and son they will need to be tested at age 25, the age recommended. Before that she wants to be sure they have life insurance and a good job. Another mother commented on the pressure it puts on their children to get their lives started early so they can get life insurance, which, unlike health insurance, can be denied based on hereditary cancer risk. From that table I moved to another that was supposed to be for men with the mutation. I took the only open seat at the table and found myself surrounded by a whole family – four siblings and their spouses. The siblings – two brothers and two sisters – were all positive for the BRCA 1 mutation that was discovered when one sister decided to be tested. Their mother had died of ovarian cancer 16 years ago and one of her sisters had died of breast cancer. Her husband was completely in favor of the testing after watching what his mother in law had gone through. The other siblings were tested after their sister was found to be positive. One sister had already had bilateral mastectomy and hysterectomy, the other sister was planning her surgery. It was time to move to the next breakout session and the family was dividing up the breakouts to take notes as they moved away from the table. Their choices: reconstruction options, screening after mastectomy, sexuality and body image, communicating with family members, understanding risk, or ovarian cancer survivor networking.