Psychosocial Issues of Breast Cancer Survivorship

I thought this article was quite informative and would help others who are wondering what is normal.

From Medscape Hematology-Oncology
Talking With Your Patients About Cancer
Psychosocial Issues of Breast Cancer Survivorship
Posted 01/16/2009

James L. Khatcheressian, MD; Susan E. Brown, MS, RN

Author Information

Editor's Note:
Patients with breast cancer face both medical and psychosocial challenges before, during, and after cancer treatment. Psychosocial issues are often related to daily family life, finances, relationships, self-esteem, and sexual identity. Dr. James Khatcheressian, of the VCU Massey Cancer Center and the Virginia Cancer Institute, both in Richmond, Virginia, discusses psychosocial issues of breast cancer survivorship in an interview with Susan E. Brown, MS, RN, Director, Health Education, Susan G. Komen for the Cure. In this interview, Dr. Khatcheressian explains how to identify depression, when to refer for psychiatric consultation, and how to provide comprehensive follow-up for breast cancer survivors.

Susan Brown: Dr. Khatcheressian, how would you define psychosocial issues that patients with breast cancer face?

Dr. Khatcheressian: Generally, psychosocial issues tend to be those issues that are outside of the patient's immediate medical concerns. Examples of psychosocial issues could be ongoing financial issues or other types of stressors within the patient's social or family environment that also may increase anxiety. These could be concurrent medical issues with other family members or logistic issues with treatment. They could be concerns about health insurance or concerns about missing too much work because of the needs of some type of adjuvant or palliative treatment.

Susan Brown: What are the most common psychosocial issues that you see in your patients relative to treatment?

Dr. Khatcheressian: There are 2 common psychosocial issues that breast cancer patients face. One is how the cancer diagnosis and treatment are going to affect the patient's immediate family, such as spouse and children. In most families, women tend to be the primary caregivers, so, of course, all of those responsibilities rest on their shoulders. And number 2 would be how the diagnosis and treatment affect that woman's own identity as a woman. That's one of the things that makes breast cancer a little unique, in that it involves surgery and chemotherapy and radiation therapy. A lot of that can affect a woman's sexual identity and affect her view of herself even within the marital relationship. In particular, young married patients will often run into marital problems, sometimes as a result of the diagnosis, and, of course, this can have long-lasting implications as well.

Susan Brown: Are there certain tools, assessment methods, or screening tests that you use to try to identify those patients who may be struggling with esteem issues?

Dr. Khatcheressian: Well, some of the most straightforward and commonsense approaches include asking a patient such questions as, "Are there any problems within your life that I need to know about as we go ahead with our treatment?" "How are your kids dealing with your diagnosis?" "How is your relationship with your spouse?" "Does your family have questions?" One of the main things I try to do throughout the course of treatment, whether it be adjuvant or palliative, is some general screening for anxiety and depression. I find that the simpler the tool, the easier it is to administer. Specifically with depression, I ask 2 questions. One is directly asking a woman, "Are you depressed or do you feel depressed most of the time?" And if she responds in the affirmative to that, then I follow up with "Are you finding it difficult to find joy in the things that you used to find joy in?" And that could include anything from the very simple pleasures in life to interest in their hobbies and their other interests. Those 2 screening questions tend to help most with regard to identifying depression. And, of course, if the answers are in the affirmative I try to deal with that immediately and then make a deeper assessment about whether to involve a psychiatry colleague. With respect to the severity of depression, if someone really does have any kind of suicidal ideation, that clearly requires much more urgent intervention. But, if a woman says that she feels depressed and is not getting out of the house as much as she used to, then we talk about that a little further and try to start some type of antidepressant medication.

Anxiety is the other issue, and some of that is appropriate. Many breast cancer patients say that, after their adjuvant treatment, any minor physical ailment (such as a cough or headache) will concern them as a first sign of recurrence. I think that is a natural reaction for many people, and that's okay because they're trying to be vigilant. But if their concerns about potential recurrence affect sleep, ability to work, or to interact with their loved ones, then clearly some type of intervention is needed to help them get back to a more normal level of functioning.

Susan Brown: Are there certain characteristics that place a patient at higher risk for these issues? Is there something special about the type of breast cancer they have, the stage, or certain treatments that put them at higher risk?

Dr. Khatcheressian: There are probably a few things that place a woman with breast cancer at higher risk for depression or anxiety. Because breast cancer gets so much press, that by itself probably heightens anxiety. There is just so much information out there about breast cancer. I recommend that patients stick to 1 or 2 Websites that I give them for patient-oriented information.

The type of social support system a woman has is very important. This includes whether she is in a happy, stable relationship, or whether her marriage is strong and whether she has a good amount of support from friends and family to help with any childcare needs, such as taking kids to school or all of those other daily issues in life. I think good social support can minimize or prevent those psychosocial stressors. Because, if you think about it, it's stressful enough to receive a diagnosis of breast cancer, worry about that cancer taking your life, and then worry about how that would affect your children. Then, there are concerns about having to actually go through the treatments and suffer the side effects of that therapy. On top of all that, the patient is just trying to keep everything straight in her life.

Susan Brown: Patients often tell us that social support diminishes after treatment ends, and that family and friends expect things to go back to normal. So often these survivors tell us that things don't really go back to normal, that they often achieve a "new normal," but that they are somehow changed. Is the time after treatment is completed when people are more vulnerable, or do you find that this vulnerability occurs earlier on, closer to the time of diagnosis?

Dr. Khatcheressian: I always tell my patients, especially the ones who have gotten through their treatment without any major stumbling blocks, that the hardest part of treatment, in my opinion, is at 1-6 months after the treatment has ended. I completely agree that that is a more stressful time for patients, for several reasons. One is that when a patient is preparing for chemotherapy, radiation therapy, and surgery, she tends to fortify herself and to build up her defenses. But once the treatment is finished, there's an emotional release of all the tension and anxiety held back during treatment. I find that patients often feel depressed, have a lot of crying spells, anxiety, and trouble with sleep, during those several months after treatment is completed. I try to prepare my patients for that, telling them that that is a very normal reaction. I offer antidepressant medication, but I try not to give them a lot of those long-term medications because it's such a normal response. There's nothing wrong with them. I do try to take care of some of the shorter-term problems, like insomnia. I can at least do something about that, and if they can get a good night's sleep, that helps with the coping and recovery processes. A lot of times patients do not ever feel like they'll go back to normal, and that is also, in my opinion, a very normal and healthy response. If a woman said that she went right back to normal and had no other concerns about her breast cancer recurring, then that would actually be a bit of a cause for concern on my part, because I would be afraid that she was in denial about her diagnosis. There certainly is a risk for recurrence and there is the need to be vigilant, so a woman who has been treated for breast cancer achieves a new type of normal. I think our job as physicians is to make that transition to that new normal as easy as possible and to help with that new stage in life where they become breast cancer survivors.

Various centers have survivorship clinics now. A lot of the community breast cancer specialists try to focus their breast cancer surveillance on that bigger notion of survivorship care, which is not just concerned about following the ASCO (American Society of Clinical Oncology) guidelines on breast cancer surveillance about symptoms, but, rather, to address all of those other areas, like bone health, depression, anxiety, lymphedema, and hot flashes. Many of those other side effects can be successfully treated. The endocrine therapies, for example, are associated with side effects such as hot flashes, vaginal dryness, or decreased libido that can certainly contribute to decreased quality of life. We really do try to address all of those things because survivorship care is not just about monitoring for breast cancer recurrence; it involves trying to treat the patient as a whole.

Susan Brown: You mentioned insomnia and depression. What about fatigue? It's my understanding that a fair number of patients report fatigue many years after the completion of treatment. What are your thoughts about that?

Dr. Khatcheressian: Yes, there are a number of causes for fatigue in breast cancer patients. The most common is, of course, side effects of therapy. For example, women can experience fatigue from antiestrogen agents such as tamoxifen or one of the aromatase inhibitors. I think a significant number of women who experience fatigue are in that group and, unfortunately, there isn't much you can do about that. There are various trials looking at agents such as methylphenidate, but they tend to be helpful in a minority of patients. I will prescribe it every now and then, but the success rate is 20% or less. The other concern with respect to chronic fatigue is that it may be a presenting symptom for an underlying depressive or anxiety disorder -- assuming there aren't other severe adverse effects of therapy, such as leukemia, myelodysplasia, or congestive heart failure. Many patients have long-term problems with chemotherapy. You've probably heard of "chemo brain." We don't have a definite etiology for what causes this condition, but that could also contribute to the fatigue complaints that we encounter.

A very interesting study on monozygotic twins was published by Ferguson and colleagues[1] in the Journal of Clinical Oncology. One twin had a history of breast cancer treated with chemotherapy and self-reported cognitive dysfunction -- despite little objective difference in neuropsychological testing, compared with her sister. However, functional MRI brain imaging revealed significantly more white matter uptake in the sister who had received chemotherapy, suggesting that she had to activate more neural pathways to accomplish the same cognitive tasks as her twin. Unfortunately, we do not know how to treat "chemo brain," but a number of ongoing studies are investigating this distressing side effect.

Susan Brown: You mentioned lymphedema earlier. How often do you see that? And how do you manage it?

Dr. Khatcheressian: Thankfully we're seeing a lot less lymphedema now than we did 10 or 15 years ago because fewer women are receiving complete axillary node dissections. In the literature, the rate of lymphedema varies, and it varies by institution. Generally, we quote a rate of about 10% to about 20% of lymphedema for women who receive a complete axillary node dissection. But, many more women are simply undergoing sentinel node biopsy, obviating the need for a complete node dissection.

When patients develop lymphedema, it is not reversible. We do try to catch it as early as possible to make referrals for physical therapy and lymphedema management. We tell patients who have had an axillary node dissection about reducing their risk of developing lymphedema by not having any blood draws or use of a blood pressure cuff on the arm that was on the same side as the node dissection, being very vigilant about even minor skin infections.

Susan Brown: You mentioned survivorship clinics. What is their availability, and how are they typically staffed?

Dr. Khatcheressian: The only one I can speak of directly is the Massey Cancer Center Adult Cancer Survivorship Clinic, directed by Dr. Alton Hart. They tend to see patients who are at least 5 years out from their diagnosis. And my understanding is that they try to do all of the standard breast cancer surveillance care, as well as address the side effects of treatment. Their focus has more to do with the psychosocial issues affecting long-term survivors, such as what their anxiety levels are and how much their concern about recurrence affects their daily lives. It's a fairly new clinic, so they're trying to collect some data because there are obviously a lot of unanswered questions. Before I left Massey Cancer Center, I developed a portable USB thumb drive tool[2] for breast cancer survivors, which is probably completing its pilot phase at this point. We're gathering data on it. Rather than relying so much on the survivorship clinic, we were trying to put more of the information into the hands of breast cancer patients. The real impetus for the study were data from a 2006 ASCO workforce study[3] that estimated an almost 50% increase in the need for oncology services in the United States between 2005 and 2020. On the other hand, oncology services were only projected to increase by about 14%. To make up for this gap between need vs availability of medical services, cancer patients will have to be more actively involved in their own care.

Breast cancer patients seem uniquely suited to a portable electronic tool that helps them with their survivorship issues because, number 1, breast cancer recurrences can occur at 15 years and beyond. So, they certainly need long-term follow-up care. And, number 2, breast cancer patients tend to be a lot more involved in their own care. They're all over the Internet. They're always bringing in a report of a study that deals with either treatment or survivorship issues. They're very savvy about the relevant medical issues, so we figured that a tool like this would simply empower them to do what they're already doing.

I had a number of my breast cancer patients come to me from the Massey Cancer Center and many of them were in this study. I would ask them, "When did you see your surgeon last?" or "When did you see your radiation oncologist last?" And they would say, "I don't remember, but it's on my key [the USB tool]." So, they'd pull the key out and plug it into my computer. Then I could see every single note from her surgeon, her radiation oncologist, her mammogram reports, previous labs, her pathology -- just about everything. It's something we're just not really used to seeing in the community. Hopefully the technology will allow us to continue doing that in the future.

Susan Brown: So what do you see as the role of education and counseling, including support groups and individual and psychological counseling?

Dr. Khatcheressian: As far as education goes, support groups will always be there and they're fantastic. They need to be run locally because I think that generally breast cancer survivors still like face-to-face support groups instead of online support groups. Our local hospital runs those. Of course, Susan G. Komen for the Cure has a good network of support groups as well, through grants made to local organizations by local affiliates.

The area that can be improved the most is how to educate patients better when they are survivors. When you look at the quality of cancer care in this country, it is generally very good, but there is a lot of variability. The ability of physicians, including primary care practitioners, to diagnose a recurrence is very good. But the quality of supportive care for survivors is really all over the place. I am referring to how well physicians treat hot flashes, how vigilant they are about referring patients for lymphedema, how well they address bone health issues, and all of the other survivorship issues that survivors cope with. I don't think patients always know what resources are available to them or what they should expect can be done. A lot of my older patients accept hot flashes from their hormone therapy as a given and think they just need to grin and bear it, but, in fact, there is quite a bit physicians can do to alleviate them. I make it a point to ask about those issues that can be addressed, but other physicians may not be as vigilant. Patient education is key because breast cancer survivors need to be empowered to seek better care, especially for the next 10 years or so as we experience even greater stress on our healthcare infrastructure.

Susan Brown: It sounds like there are a lot of topics to be covered when following breast cancer patients. How do you meet that demand in your busy practice?

Dr. Khatcheressian: I go over a checklist with my patients. "Are you having hot flashes? Are you having problems with chronic fatigue? Any problems with anxiety or depression? When was your last bone scan? When was the last time we checked a vitamin D level?" We address lymphedema if she had an axillary node dissection and it is relevant. I address those topics, which represent about 75% of what most patients need, at every visit. Then there are other things, like lingering neuropathy issues, that we would address if relevant.

The typical breast cancer patient in this setting is usually postmenopausal and estrogen-receptor positive, so she may or may not have had chemotherapy. Hopefully, she has had a lumpectomy and radiation therapy, and then she's seeing me during her regular follow-up visit. So we always talk about symptoms of recurrence, whether there's anything physically that she's noticed that is abnormal for her. My threshold for being concerned about something is 2 weeks. If a woman has had a cough for longer than 2 weeks, for example, then I'm going to look into it and I'm not going to chalk it up to just a typical upper respiratory infection.

Susan Brown: What would you want other community physicians to know about your checklist and how to follow these patients?

Dr. Khatcheressian: Electronic medical records make the checklist a lot easier. Within our electronic medical record I have a standard breast cancer follow-up template where, in my impression and plan section, I simply list all of the things that I already enumerated. Since I do this all the time, it's just second nature for me to go through hot flashes and bone health and vitamin D levels and libido issues and anxiety and depression issues, but for providers who don't see quite as many breast cancer patients, I think some kind of standardized format is most helpful, as well as a general algorithm to follow. And in many cases, especially when nurse practitioners or RNs are available, having an algorithm for common symptoms (such as an SSRI [selective serotonin reuptake inhibitor] for hot flashes) can be very helpful.

Susan Brown: Do you have any concluding thoughts?

Dr. Khatcheressian: In my practice every woman with a new diagnosis for breast cancer gets a 1-page summary sheet of everything she needs to know about surgery, radiation, chemotherapy, and endocrine therapy. This is because quality and consistency of cancer care, especially breast cancer care in this country, is quite variable and because breast cancer is always managed in a very multidisciplinary fashion. There is always a surgeon, a radiation oncologist, and a medical oncologist involved, possibly a plastic surgeon, and obviously a radiologist, as well. Some communities, like ours, have a multidisciplinary breast cancer clinic. The problem is that patients still see a variety of doctors and every doctor addresses his or her own particular area -- but no one consolidates that information for patients. So my 1-page handout describes diagnosis, stage, the various treatment options available, what we're going to do, and why we're going to do it. For example, "do you need radiation?" Yes. Why are you getting radiation? "To prevent local recurrence," for example. "Why are you getting chemotherapy?" To prevent distant disease recurrence. "What is the chance that chemotherapy is going to benefit you?" There is, for example, an 8 out of 100 chance that it will benefit you in this setting, and this is the chemotherapy regimen we would use. "What are the side effects of treatment? What does treatment involve?" An IV, a portacath, lab work every few weeks, white blood cell growth factor support, etc. All of that goes onto 1 page and becomes the patient's guide through this journey of her treatment. I think that is definitely not done in the community, but I think patients do appreciate it and I think it is genuinely helpful to them.

The last issue I'd like to discuss is where patients should get information about cancer or survivorship issues. I always refer patients to 3 Websites: the American Society of Clinical Oncology (www.cancer.net), the American Cancer Society (www.cancer.org), and Susan G. Komen for the Cure (www.komen.org) because they're all easy to understand and navigate.

This activity is supported by an independent educational grant from Susan G. Komen for the Cure.