Friday morning here in San Antonio opened with a talk by Dr. Lesley Fallowfield (University of Sussex) on “Psychology/Survivorship Issues: Are we doing any better?”
Originally a nurse before pursuing degree in experimental psychology, Dr. Fallowfield’s talk was remarkable for her humor and humanity. Unlike so many people immersed in clinical trial data, rather than downplaying effects of treatment and diagnosis, she understands the “really horrible” nature of many side effects and takes seriously the question of whether we are making progress.
Dr. Fallowfield’s talk addressed two issues of survivorship: both women who will go on to be cancer free and, too often overlooked in survivorship discussions, women with metastatic disease who have equally important psychosocial needs. As more women are surviving their diagnosis for longer, there is a growing community of women living with breast cancer.
But “nothing comes without a cost” notes Dr. Fallowfield—and the cost of both diagnosis and treatment is substantial. Even advancements in better radiation, more chemo options, a range of hormone treatments, new targeted therapies all take a significant toll. And these physical effects of treatment are accompanied by important psychological, social and sexual effects. All of which can be acute and long-term. While many of these effects are documented, they are themselves not adequately managed. Furthermore, “few patients inhabit social vacuums and diagnosis and treatment affect everyone else in her social milieu.”
Anxiety and depression are common among women diagnosed with breast cancer. Approximately one-third of women are likely to have experienced one or both over the disease period. But, importantly notes Dr. Fallowfield, measures of anxiety and depression were developed for psychiatrically ill, rather than physically ill, patients.
And given the implications of a cancer diagnosis, anxiety is not inappropriate. Women do face a real risk of recurrence and metastasis, even years after the initial diagnosis. And for this reason, Dr. Fallowfield argues how anxiety is understood and managed ought to take account of the fact that women are in fact facing potentially life-threatening disease. To date, non-pharmacological interventions (like Yoga, art and music therapy, mindful-based stress reduction, cognitive behavior therapy, aromatherapy, massage, etc. ) have ebbed and waned in popularity, with mixed and modest results.
Given my personal and professional experiences supporting women through breast cancer diagnoses, I was not at all surprised that 80% of patients referred to a counselor for anxiety actually had unmet informational needs rather than psychological problems. As we know more about breast cancer (and more about what we don’t know), communication with patients has gotten more and more complex and the importance of patient information and decision aids is clear. Healthcare providers must ensure patients are truly educated and give informed consent—not an easy disease to explain with all the sub types and advances in treatment options.
With changes in systemic therapies over the years, fatigue has come to replace nausea and vomiting as the biggest post cancer treatment problem. Again, this is acute yet may last many years. To treat it, Dr. Fallowfield argues, we must understand it. And it turns out rest is not the best remedy for fatigue. As several papers have shown this year at SABCS, exercise improves mood state and fatigue, specifically aerobic exercise but not resistance training.
When it comes to the debilitating problem of lymphedema, prevention is the key. Without good treatments, it is up to surgeons to minimize harm by doing sentinel node biopsy that dramatically reduces the rate of lymphedema from 20% to 5.6%.
The side effects of hormone therapy, vasomotor problems, sexual problems that can occur from treatment are not just minor inconveniences—and they lead to women going off treatment. Each of these effects are often under recognized; and if under recognized, they are then under reported, and as a result under treated.
Almost three quarters of Australian women experienced sexual problems in the 2 years following diagnosis. Eighty-percent of those women claimed they had satisfying sex life prior to diagnosis. Moisturizers are better than lubricants for vaginal dryness. Seventy-seven percent of these Australian women reported hot flashes and night sweats. In terms of non-hormonal interventions, only relaxation decreased frequency and severity.
An effect of cancer diagnosis that is rarely addressed in forums like SABCS is the economic burden on women and their families. While there is some discussion of the high costs of treatments, the broader economic impact is rarely discussed. I was surprised to learn that many women don’t return to work and 10 months after surgery, that number is only 59%. With the caveat that I do not have access to her slides, I believe Dr. Fallowfield reported that the estimated economic loss for women and their families is $16,441 in the year of diagnosis and an additional $4,500/year thereafter.
I was so pleased that Dr. Fallowfield explicitly discussed what she called “survivorship” in metastatic breast cancer. Virtually all of survivorship focused on breast cancer neglects the issues in metastatic disease. Yet there are clear and unmet psychosocial needs. About half of women reported difficulty talking to others, denying severity of illness to close friends and relatives. Inability to work presents major challenges and has a huge impact on families. Frequent medical appointments produce additional strains.
One area that has been discussed is the physical and psychological impact of bone metastasis, which is often painful and not effectively treated. And my own focus on inequities brings me to add that African American women are at particular risk for inadequate pain control, as research has shown their doctors are more likely to suspect drug dependency.
Dr. Fallowfield concluded by addressing the discomforts of treatment and the impact of time spent traveling to and from endless medical appointments as well as the time waiting to be seen. She discussed ways of changing treatment protocols to minimize this time as well as the discomfort of IV treatments.
After all, time is precious for all of us, whether we are living with metastatic cancer or not.