For those with an inherited predisposition, cancer remains a serious and pervasive threat. But as scientists learn more about hereditary cancer, we have greater opportunities to apply research to live longer and better. As a community we must continue to press for more research to understand the long-term health consequences of hereditary cancer and risk-management choices. And as individuals, we need to advocate for our own care to assure that we take every possible action to stay as healthy as possible.
As scientists begin to study the impact of surgery on overall health; the role of BRCA genes in maintaining heart health; the effects of menopause on bone health, memory, and quality-of-life; and other issues, they are revealing new health concerns that require long-term monitoring.
So many people post on our message boards, call our helpline, and email us with questions about their overall health. What follow-up should I have? Which doctors should oversee my care? If I have prophylactic surgery, am I trading one health risk for several new risks? These are valid questions.
In 2010 the large, multi-institutional PROSE study reported conclusive data that prophylactic surgery lowers the risk for cancer and prophylactic salpingo-oophorectomy lowers the risk for mortality in women with mutations. This was important, long-awaited data that validated a lifesaving intervention.
But this advance in knowledge is tempered in part by research that suggests that early menopause can lead to increased risk for heart disease. Preliminary studies on laboratory animals propose that the BRCA genes may play a role in repairing heart damage. As more women seek prophylactic surgery at younger ages, risk for heart disease later in life becomes more relevant. But little is known about the magnitude and timing of this risk, or the best way to monitor or potentially offset this risk. Will exercise, medications, or hormones help, and by how much? Should we schedule regular visits to the cardiologist? Is the risk for cardiac disease even higher for those of us who have undergone chemotherapy with agents that are known to damage heart tissue? The answers to these important questions will only be elucidated through more population-specific research.
Similar concerns have been raised about bone health and memory. Just how important are hormones in maintaining our memory? Researchers have just recently begun to address the impact of chemotherapy on memory–so-called “chemo brain.” Are the effects of hereditary cancer treatment plus early menopause on memory cumulative? Are interventions like hormones, exercise, practicing problem-solving, helpful? Likewise, early menopause and medications used to treat some breast cancers are implicated in accelerating bone loss. How can we best protect ourselves from osteoporosis and fractures?
So many members of our community receive health care piecemeal. We see genetics experts to assess our cancer risk, a breast surgeon or oncologist for breast health, a gynecologic-oncologist for our ovarian cancer risk. But after our yearly screenings or surgery, what then? We are still at higher risk than the general population for other cancers and possibly for other diseases. Who follows us? Can we find a primary care provider who has expertise in hereditary cancer and associated health issues? Some of our members report that they are released from their surgeon's care after surgery and sent on their way with no long-term evaluations scheduled. I have spoken with women who are post-menopausal in their 30s who have never had a bone-density test and have never received guidance on when or how their bone health should be assessed. Are we missing opportunities for further disease prevention with this myopic approach to health? Coordinated care is a secondary but critical emerging topic. We cannot let these essential survivorship and previvorship issues go unaddressed or become so eclipsed by cancer risk that they are totally ignored.
FORCE will be watching closely—but not from the sidelines—as research on these topics unfolds. We will be addressing these subjects at our Joining FORCEs conference, with experts who will present on the link between BRCA and heart health, bone health, menopause management, hormones, screening after surgery, and other topics associated with long-term health. We will continue to press for studies to look at long-range health within our community, broadcast updates to our members, and promote resources that help our members address the big picture in their care. Until there are more definitive answers and established guidelines, we must each be proactive and responsible for our health care.