Psycho-oncology issues—fear of recurrence

Taking control of her health and life again

When a patient completes her breast cancer treatment, she feels more anxious than relieved. This has been studied. Nervous about separating from her treatment team. Lacking faith in her body since it has already betrayed her once. Not feeling confident that she is in fact “a survivor.” There are even debates among patients and health care professionals when someone can add that label to themselves and refer to themselves as a survivor… If she is still taking hormonal therapy she technically is still being “treated” yet we don’t think of her as a patient now in active treatment.

The biggest fear is that of fear of recurrence and it can cause depression, anxiety, cognitive thinking problems and inability to get on with her life. Each ache and pain is treated as possibly being the cancer returning.

She was accustomed to seeing her oncology team frequently and hearing the reassurance that she is doing well and looks fine. Now those visits are spaced many months apart and in some cases perhaps discontinued completely.

Some things she can do that are constructive ways to help her get control over her life again and move on breast cancer are the following:

assess her life style habits and see if any are contributors to developing breast cancer. Smoking, alcohol consumption, weight gain, inactivity can be considered contributors. By watching her weight, avoiding smoke including secondary smoke, limiting alcohol consumption, and exercising regularly, she can feel more in control and see that she is taking charge of her health with steps that reduce risk of breast cancer.

staying informed about the latest information regarding breast cancer and its treatment. Sounds simple but she needs to be guided to read information that is credible and not merely access the website and read anything that crosses her computer screen. There is as much misinformation on the internet as there is valid information. Help direct her to websites that she can depend on having accurate information and empowering with so that she is an informed survivor. www.breastcancer.org is a useful resource. The Hopkins site is as well at www.hopkinsbreastcenter.org .

some patients have difficulty returning to work, returning to their home routines and need a bridge to help them for a while. There is nothing wrong with recommending she see a psychotherapy to help during this time. Breast cancer is a life altering experience. Her family and coworkers may be weary of having held down the fort for months and now that her treatment is done, expect her to be back to her old self and resume doing everything as before. She is a different person though… probably in touch with her mortality. What she felt obligated to do before may seem trivial now. There are therapists as well as some programs like Survivor Retreats that can help women set new life goals, figure out how to communicate with their family members about what they have experienced and how this may have changed her. Most marriages grow stronger but some do not. There is a tendency sometimes to seek a quick fix and get a prescription for anti-anxiety medicines. This usually isn’t the solution. It just numbs her from dealing with the underlying cause that needs to be discussed and dealt with.

she experiences difficulty differentiating between long term side effects of treatment (such as bone pain from hormonal therapy) and possible metastatic disease. Today scans are not routinely done. Instead new onset of symptoms that are persistent trigger the need to investigate things further with diagnostic testing. (see chapter on chemotherapy)

she may be worrying about the risk of developing other cancers, like ovarian or colon cancer. Discussing with her what steps can be taken to proactively monitor her health is important now. Annual pelvic exams, possibly periodic transvaginal ultrasounds in some cases, colonoscopy in keeping with the standards of care recommended for other individuals will help her to feel more confident that she is doing well.

some women experience great anxiety and guilt fearing they may have passed this disease onto their children. For women who have factors that would imply she may carry a breast cancer gene, this is a time to discuss and possibly refer her for genetics evaluation (see chapter on high risk /genetics). If she does carry a breast cancer gene, encouraging her to discuss with a genetics counselor ways to further assess her children’s risk is needed. This is no one’s fault. It wasn’t planned. This sometimes needs to be reiterated.

anxiety about having “missed” the benefits of newer treatment options that are developed and available after her treatment is completed is an issue for some. Women read about new drugs, new treatments and feel deprived that they weren’t available for them when they have treatment. Some will even attempt to find a doctor that would be willing to give them the treatment now, even if they are several years out from their breast cancer diagnosis and treatment completion. Emphasizing that these treatments are available if they possibly may need them in the future is what needs to be stated as well as explaining that there are women who were diagnosed before they were who also wish they have the treatments that these women received more recently. The good news is that there are new treatments being developed on an ongoing basis that will benefit the next generation.

(discussion about choice of lumpectomy/mastectomy—fear post treatment—study.

Encourage participation in breast cancer events that celebrate survivorship and raise money for breast cancer research. Having survivors come together for a common cause is good for everyone. Seeing others who feel the way they do reassures them they are not alone in their thoughts. Raising money for research helps to feel more positive about what the next generation of their children will be facing—hopefully less treatment and perhaps even prevention and cure.

Support groups have good features and not so good features. Women who are going through active treatment can benefit from talking with others who are doing the same as well as those who have recently completed their treatment. They can feel camaraderie, a sense of belonging, and feel reassured that the thoughts and fears they have are normal. Women who attend support groups for years though may not be doing themselves a favor. For some it can promote fear of recurrence. How effective the facilitator is in running the support group is critical to its success in helping women with their emotional well being. If someone is 10 years out from treatment and still feels a need to be in a support group and talk about her fears then it may be a signal she needs one on one psychotherapy.

Making your patients aware when an educational seminar is available in your region to update them on breast cancer diagnosis and treatment is something that many survivors enjoy attending and appreciate their doctors and nurses letting them know about. It helps to reduce fear for most and keeps them informed about what is the latest news regarding diagnosis, treatment, and the future as it relates to finding a cure and prevention.