September 2012 Ask the Expert: Navigating Your New Normal
The end of treatment can bring unexpected challenges as you return to “everyday” life. During the month of September 2012, Living Beyond Breast Cancer expert Julia H. Rowland, PhD, answered your questions about navigating your “new normal” after treatment ends.
Dr. Rowland: Just because a physician tells you that you are now disease-free, that there is no sign of cancer, does not mean that the illness experience is over. Many women find that they feel worse at the end of treatment than when they started their breast cancer journey.
The first step in finding your new normal is to realize that recovery takes time. Some of the side effects that develop during treatment, such as fatigue, pain, problems with sexual function and trouble with memory and concentration, may linger for weeks or even months after chemotherapy is completed. So finding your new normal will take a while.
Giving yourself time to heal is very important. It is often helpful to talk with your physician or medical team about what to expect in the first few months after treatment ends. The National Cancer Institute has an informative booklet called Life After Cancer which addresses this topic. It is part of our Facing Forward series, designed specifically for people ending their cancer treatments, and provides practical advice about how to manage the medical, psychological, social and practical concerns associated with “re-entry” into your new post-cancer life.
Dr. Rowland: There is no “statistical” timeframe for recovery. Each woman is unique in her trajectory of return to wellness after cancer.
How long this takes may depend on a number of factors: your age and health before you had cancer, the stage of disease and treatments received, complications that may have occurred, the demands upon you from work, family, and community, and resources you may have had and continue to have to manage your well-being.
A helpful rule of thumb is to recognize that it may take as much time to recover as it did to be treated. With this in mind, to estimate your personal recovery time, you would add up the time spent from the moment of the first symptom or actual diagnosis through the end of the last treatment and apply this to figure out how long it may take you to recover. So if this period is three months, then by three months after treatment it would be reasonable to be feeling better again, or settling into your new normal. If it was 10 months, then your recovery may take longer.
Many women and their family members expect to feel better right away after treatment stops. This rarely happens. Healing takes time. Another consideration is that family and friends want this experience, both for themselves and for you, to be finished. They want life back to “normal.” While this desire also is normal, it can create tensions if it results in unreasonable expectations for a speedy recovery.
Dr. Rowland: Finishing cancer treatment, while an event to be celebrated, can also be frightening. Many women find themselves unprepared for the anxiety that may set in upon anticipation of leaving the caring safety net of their oncology clinic and staff.
Worries that the cancer may come back now that the treatment has stopped are common. Indeed, fear of recurrence is the most universal long-term effect of being a woman diagnosed with breast cancer. A number of tips can be helpful in managing your fears.
First, it’s important to establish with your team what the plan is for follow-up and whom to call if an issue arises. Currently there is a national movement to encourage use of Survivorship Care Plans, which provide women with important disease and treatment information for managing their future health. They also contain information on what follow-up tests are recommended and how often these tests should be done, what symptoms may persist and how to manage these, what health behaviors may help reduce risk of recurrence and who will be providing care going forward.
Second, knowing your actual risk of a recurrence can also be helpful. Many women overestimate this risk.
Third, if you are already following advice for a healthy lifestyle and recommended follow-up care, you are doing everything you can to prevent a recurrence. You can give yourself permission to let some of the worry go about things you simply cannot control. (Easier said than done, it is true, but a helpful way to think about worry.)
Finally, fear of recurrence usually gets less over time and as you continue to feel well. However, you need to know that even if you do all of the above, fear of recurrence may pop its head up from time to time.
The most common trigger to these feelings is around follow-up visits and mammograms. Worry can also be triggered by other experiences, such as knowledge or news accounts of others who have cancer, illness in yourself or a family member and in times of general stress. Knowing that this happens can help these times be less anxiety-filled.
If you find that you simply cannot stop thinking about the cancer coming back, you may benefit from a referral to someone who can talk to you about what is causing this worry.
Question: How do you deal with reducing stress for survivors for whom life before cancer was already very stressful (such as limited resources, lack of insurance and other socioeconomic factors)? The new normal will now add another layer of stress.
Dr. Rowland: Many women diagnosed with breast cancer worry that stress, that sense of not being able to cope with the physical, socioeconomic or emotional demands being placed on them, may have caused them to become ill in the first place and/or will result in their cancer coming back. Research on stress among humans suggests that feeling stressed is not good for all health conditions, not just cancer.
Cancer is not an illness that is easy to manage alone. We treat cancer in teams and realize that those diagnosed with cancer also need their own support team to negotiate this experience. When this is lacking, it is important to find other sources of support.
Asking your medical team for help identifying support resources is an excellent place to start. They may have an affiliated social worker who can provide details on local support opportunities.
Fortunately, a number of national organizations also exist to help. These include LBBC for starters, but also the American Cancer Society (800-227-2345), CancerCare (800‑813‑4673) and the Cancer Support Community (888-793-9355).
On the personal side, acquiring relaxation skills and techniques for managing worry are also powerful ways to reduce feelings of stress. Perhaps your “new normal” will be as someone who recognizes the sources of stress in her life and actively uses her newfound resources and skills to manage these!
Question: How can I figure out whom to contact for lingering issues? I am not sure who to go to—my primary care provider (PCP)? Radiation oncologist? Medical oncologist? It is very confusing, and I really am not sure that anyone is communicating to anyone else. I have had to specifically followup and ask for treatment information to be sent on to my PCP. It can be overwhelming.
Dr. Rowland: Figuring out whom to call about lingering issues after cancer can be confusing and stressful. For many women treated for breast cancer, it is unclear who is “in charge” once treatment ends. It is precisely for this reason that there is a national movement happening to ensure that you receive a survivorship care plan from your cancer doctor or team as you make the transition to recovery.
A survivorship care plan has two main parts. The first is a treatment summary.The treatment summary provides information about your cancer type and stage and relevant tumor characteristics along with details of all of the treatments you received and any major complications you might have had along the way.
The second part of the survivorship care plan is the plan for follow-up care. This part notes any persistent problems you may be experiencing (fatigue, pain syndromes or sexual difficulties, for example) and how these will be managed and by whom, along with providing information on potential resources to help you manage the side effects of therapy.
It also provides information about potential late effects of breast cancer or its treatment (such as risk for recurrence or second cancers and risk for heart problems, if this is relevant)and what will be done to test for these late effects going forward (for example, how often you should have a mammogram and physical exam). Recommendations for healthy lifestyle behaviors that may benefit your recovery and reduce your risk for other chronic health conditions should also be included.
Finally, the plan should include names and contact information for those individuals who will be following you for different aspects of your health care.
The survivorship care plan is meant to serve as an important communication tool for you, your cancer team and your primary care providers. It is not enough that you receive a copy of this document. Rather, it should be part of a conversation that you have with your cancer clinician. A copy of the plan should also be sent to your primary care provider.
If you do not already have a survivorship care plan, you may want to ask your medical oncologist or radiation oncologist to work with you to develop one and to sit down with you to discuss your plan’s suggestions for deciding who will coordinate your care in the future.
Question: How can one cope with "chemo brain" after returning to a high-functioning, demanding management position? (It is a small office where mistakes and changes are apparent.) Daily difficulties not present before treatment include lack of concentration, short and long term memory, "zoning out,” inability to multi-task, confusion, forgetting words, procrastination, disorganization, losing track of items and information, becoming easily sidetracked or distracted, etc.
Dr.Rowland: Problems with memory and concentration, often referred to by women treated for cancer as “chemo brain” or “chemo fog,” can persist months after treatment ends. Research suggests that the cause of these problems may not be restricted to exposure to adjuvant chemotherapy. They can also occur in association with hormonal therapies and, in younger women, as a consequence of undergoing acute or premature menopause secondary to treatment.
The good news is that for the majority of women, these symptoms appear to improve over time, and there are a number of tips to help manage them. Creating a work environment that minimizes distractions may reduce problems with concentration. This may mean finding a quiet place to work,keeping your door closed for set periods of time, blocking out time each day when you are not to be disturbed, or teleworking from home a couple of days a week, if this is feasible and not more distracting.
Working on one task at a time (versus multi-tasking) is also beneficial. Data suggest that this is a good policy in general. Even though many of us pride ourselves on our ability to do lots of things simultaneously, this turns out to be a less efficient approach to thorough and thoughtful completion of tasks.
As emails can be a source of distraction which sidetrack attention and disrupt concentration, you may wish to explore the idea of having set blocks of time each day when you will respond to emails.
Some women report that using sticky notes both at home and at work is helpful to remind themselves of important dates or tasks to be done.
Ensuring that you are getting enough sleep and exercise, both of which help with cognitive function, is also important.
Should problems persist even after you have tried one or more of these ideas, you may wish to consider seeking evaluation by a neuropsychologist to determine what aspects of your mental functioning are affected and whether there may be more specific interventions to help.
Question: What are the best ways to cope with "I'm lucky to be alive, but this isn't me OR my life" feelings? Physically, mentally and emotionally, I am different and have been unable to accept this stranger I've become.
Dr. Rowland: One of the biggest challenges of surviving cancer is coming to terms with the fact that you are no longer the same person. Simply hearing the words “you have cancer” changes a person. And then there is the experience of going through treatments and their often complex effects on your physical, mental, emotional, social and existential experience of self.
While some people appear to cruise through their cancer experience, for others it is profoundly life-altering. The change, however, does not have to be purely negative. Rather, it is what we do with the experience that matters.
Perhaps the best advice is to be deeply kind and compassionate to your new self. You have met and gotten through a frightening, arduous and toxic round of treatments and made it out the other side. Your courage and accomplishment are to be celebrated.
There is indeed grief for the lost, pre-cancer self; these are feelings that may need to be acknowledged and honored in order to move on and embrace full-throttled living. As you look to the future, you will come to know and love the new you,recognizing that you have deep reserves, passion and purpose that you may not have previously realized.
Dr. Rowland: As I wrote in response to a question posed last week, recovery takes time; often longer than expected. Depending on the nature of your cancer and treatment experience,return to pre-cancer levels of energy and function can take months, not days or weeks.
Family, friends and co-workers want you to be “back to normal” as quickly as possible. They are just as eager as you are to put the cancer experience behind you. For this reason, it is important to let those around you know that your return to health will take some time. Toward that end, it may be helpful to explain to your supervisor (and colleagues, if appropriate) that some of the effects of treatment may take a few weeks to resolve and to discuss in practical terms how your recovery pattern may need to be accommodated.
Setting a realistic time plan for return to expected levels of performance is important.This reduces the likelihood of those at your workplace setting unreasonable demands on your time and energy and becoming angry or frustrated by feeling that you are somehow not carrying your load. It also creates space for you to heal fully.
Depending on how you are feeling, there may be some activities that are easier to resume more quickly than others. You may decide to phase back in; coming in for shorter days and then lengthening them as your strength returns. Keeping channels of communication open is key in planning your re-entry.