At the 2016 Cancer Survivorship Symposium, Dr Ganz spoke with Value-Based Cancer Care (VBCC) about the importance of cancer rehabilitation, the politics of surveillance, and the greatest unmet needs facing survivors.
VBCC: Given that this is the inaugural survivorship conference, can you discuss the evolution of survivorship?
Dr Ganz: Like anything in medicine, it takes a long time to change things. If you look at the Institute of Medicine reports from 10 to 12 years ago, critical numbers of survivors have made a difference, but the transformation of the healthcare system has been very challenging. Even though this issue is going back 30 years, it is still a work in progress.
VBCC: What was your role in this evolution? How did your program at UCLA come about?
Dr Ganz: I have been a researcher for a long time, which has been my primary activity, but I always saw patients who were referred to me. Whether I was studying the management of menopausal symptoms in women, chemo brain, or sexuality, physicians in the community would send patients to me, because they knew I had expertise. They would send me their difficult patients, and some patients gravitated toward me because they were not happy with the kind of care they were receiving. So, I had a large number of cancer survivors in my practice while doing research.
We were funded by the LIVESTRONG Foundation approximately 10 years ago, which gave me the opportunity to do a more formal, but very minimalist, program. My practice is still very much boutique and consultative.
Even in a place where I am an expert and an authority, getting an institution to pay for survivorship care is very difficult. An institution may pay for high-ticket items, such as a new machine or a new sequencer, but getting personnel can be a challenge. After 10 years, UCLA is now paying a salary to nurse practitioners.
VBCC: Is it because it is difficult to quantify the value of survivorship care?
Dr Ganz: No, I do not think so. Because when anybody is close to someone with a life-threatening condition, they want survivorship care for their family. I think there is a lack of awareness. But if you cannot heal the mind, you cannot heal the body; the physical rehabilitation and the functional decline that occur with a lot of cancer treatments are very substantial. We do not put a value on that in the sense that we look at whether the tumor shrinks, but we do not see if the patient can walk out of the hospital.
VBCC: Can you elaborate about the notion of cancer rehabilitation?
Dr Ganz: Cancer rehabilitation basically includes a needs assessment, which is what a treatment summary and survivorship care plan do, and it goes through the needs of the patient. You can then do referrals and interventions for whatever those needs are.
In the 1970s, there were cancer rehabilitation programs across the country that were in-house and in institutions. At that time, we did very disfiguring surgical procedures, and those patients needed a lot of physical rehabilitation. As we began to do less surgery and more multimodal therapies (ie, breast-sparing and limb-sparing), people began to question the need for rehabilitation and staying in the hospital.
Women used to stay at the hospital for a week to 10 days after having a mastectomy. When I started doing my research on breast cancer in the early 1980s, the number of days dropped to between 3 and 5; now, outpatient mastectomies are performed. So, the opportunity to engage with patients and to do hospital-based rehabilitation disappeared. Also, Medicare changed its reimbursement so that cancer was no longer a reimbursable condition.
People are now realizing that we need rehabilitation, and there is a movement in the physical medicine community to put cancer survivorship on there. We need to do these things from the time of diagnosis, because if you let people debilitate and decline with their treatment instead of maintain their health, then you are going to have a worse time. You cannot suddenly start rehabilitation 6 months later.
VBCC: What are some of the greatest unmet needs facing survivors?
Dr Ganz: One is the idea of planning the treatment so you minimize morbidity. Upfront, you are thinking about the comorbidities that the person has. You want to tailor the patient’s treatment to his or her personal risk factors and then find a way to intervene early. You need to personalize medicine for the patient, as well as the tumor. You need to identify who is going to be at high risk for fatigue, psychosocial distress, and depression. Assess upfront, and then monitor and intervene early, if possible, for any side effects; and make sure that you do not abandon patients after their treatment ends.
VBCC: The issue of oversurveillance in survivors has struck a nerve in patients and providers alike. Why is adopting a less-is-more philosophy of care so controversial?
Dr Ganz: Because people do not understand the evidence. We have a culture that believes that more is better, even if there is no benefit, but more may be harmful. Being poked with an intravenous line, having tests done, and the patient being anxious because he or she does not know what the tests are going to show are costs that the patient bears, and there may be zero benefit, not to mention the time away from doing things that are more pleasurable.
If there is reassurance, it may be false reassurance. Just because your scan is negative, it does not mean you are cured. Very often patients will say, “I was doing all of these tests. Why didn’t you detect my cancer?” In the meantime, they have cumulatively received large amounts of radiation.
We need to move the patient back to primary care, because oncologists check for recurrence, but they may not have given the patient a flu vaccine, counseled the patient about weight gain or tobacco use, or made sure the patient was getting other screening that is important. If a primary care physician is sharing care with a patient, then the patient does not see cancer as his or her only illness, but also realizes the need for other preventive services.
VBCC: Are you trying to expand your program at UCLA?
Dr Ganz: I would like to see the program institutionalized to integrate it into oncology care. UCLA has really good primary care physicians. My goal is to have that be integrated into team care.
