Receiving a breast cancer diagnosis can be a truly devastating experience. One minute your biggest issue is dealing with a difficult co-worker or making it to your kid’s soccer game on time, and the next you find out you’ve got a life-threatening illness. As a result, it’s not uncommon for a breast cancer patient to experience a significant increase in anxiety levels, depression and fear. And treatment can radically change the way your body looks and feels, causing a shift in body image that can have a lasting impact for some patients.
Such was the case for Kirsten Krieger of Wake Forest, North Carolina, a 44-year old divorced mom of two teenaged boys. Krieger had been having regular screening from her doctor because of a history of fibrous cysts in her breasts, and during an exam at age 40, her doctor decided a dense area of tissue just didn’t look right. She underwent a surgical biopsy, “but it turned out to be nothing” she says. Nevertheless, her doctor wanted to keep a close eye on her and continued her biannual screenings. During one of her routine screenings 18 months later, two lumps turned up and subsequent testing revealed that she had stage 1 invasive ductal carcinoma
In Krieger’s case, and for many other women who go from a routine screening mammogram to cancer patient practically overnight, the amount of information you’ll receive and the sheer number of decisions you’ll need to make about your care – from picking your surgeon to deciding whether to have a lumpectomy or mastectomy – can be overwhelming. This is where a social worker or psychologist can help you wade through all the material and make smart decisions during an emotionally difficult time.
Dr. Heather McGinty, a clinical psychologist and assistant professor in the department of behavior at The Ohio State University, says she tries to help patients prepare for what’s ahead by providing them “with information about the most common things they could experience.”
McGinty says information is a powerful antidote to fear and anxiety, and she encourages open communication between patient and caregivers during each phase of treatment. McGinty says that if side effects are bothersome, the care team may be able to alter their approach or change tack. This is just one instance where open communication with your care team can impact how you feel during treatment – but only if you tell them. “Speak up and let the team know. If any side effects get in the way, there are ways to intervene, and we can find different medications or strategies to make those symptoms less,” she says.
For example, tamoxifen, a common breast cancer treatment, can cut a woman’s rate of breast cancer recurrence by up to 50 percent. But it can also have undesirable side effects that must be considered, including fatigue, weight gain, reduced libido and depression. Additionally, certain antidepressant medications can interfere with tamoxifen.
Krieger wasn’t sure she wanted to take the tamoxifen her oncologist prescribed, but she reluctantly did so for about five months and said she had “horrendous side effects. I had brain fog that was unreal.” In addition, she says her period “became unbearably heavy. It was like I was 12 again, bleeding through clothes in two hours.” The extreme exhaustion she felt was also intolerable, so after a lengthy discussion with her oncologist and a careful analysis of her risks, she decided to stop the tamoxifen treatment.
“There’s a lot to think about, and if it comes back, will I wonder if I should have tried harder?” she asks, but says she doesn’t regret her decision. “My tumor was so small, and my risk of recurrence was so small” that it just didn’t make sense to suffer for the next five or 10 years on the drug. For her, the potential benefits didn’t outweigh the harms of the side effects. “Anything could happen tomorrow, and I don’t want to waste the time being sick,” she says.
Another decision that Krieger made was to have a double mastectomy and not have her breasts reconstructed. After her painful experience with the needle biopsy, she opted to have both breasts removed, because “I didn’t want to go through a ton of surgery. I just wanted to go back to normal. I wasn’t going to let it take another minute of my time,” she says.
Although Krieger says she had relatively small breasts and never identified herself or her sexuality by them, the drastic change in her body is proving to be harder to get used to than she anticipated. “Until you’ve been through it, you don’t know what it’s like to live flat. They’re just boobs, but it’s different than I thought it would be. I do like not having to wear a bra. I do like not having pain in my breasts when I have my period. I didn’t think I would miss them. But I do.”
In addition to adjusting to her new body, Krieger is also still quite fearful that her cancer could return, a wholly understandable and common aspect of breast cancer survivorship. “It’s just a waiting game. Every little ache and pain, you think, ‘is it my cancer coming back?’”
Some breast cancer survivors find that exercise can help them cope with this anxiety as well as some of the changes their bodies are going through, and this is supported by research. A 2016 study published in the journal OncoTargets and Therapy reviewed the results of 33 different exercise intervention studies and found that exercise was associated with reductions in depression and anxiety.
Although there doesn’t seem to be a clear recommendation yet for the best type, duration and frequency of exercise to combat the negative emotional aspects of a breast cancer diagnosis, breast cancer survivorship guidelines published by the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Medicine in Baltimore recommend that breast cancer patients and survivors exercise regularly. “Exercising regularly improves fatigue symptoms, reduces stress and impacts long-term overall health. The 10-year survival rate is higher in patients who exercise regularly than in patients who do not. We recommend that you engage in moderate exercise at least 3 to 5 hours per week.”
Talking with a therapist, a family member or other breast cancer patients or survivors can also help alleviate stress and depression, and many people find solace in support groups. These days, online support groups are many and varied in their approach. Krieger has connected with a global breast cancer support group called Beyond the Pink Moon and has a supportive family network that has helped her make decisions about her care.
A family and community-based support network can be very helpful in coping with a breast cancer diagnosis, says Annie Trance, a licensed independent clinical social worker and program manager of the psychosocial oncology department at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James).
Trance says cancer is a disease that affects the whole family, not just the patient. “The more we support the family as a unit or the people who support the patient, the better we are at helping the patient throughout the whole process.”
Trance says the James offers support groups for patients, even though “there’s not a whole ton of research out there about the efficacy of how they’re reducing anxiety and depression. But there’s lots of evidence that increased support reduces overall stress, and that puts patients in a position to respond better to treatment,” she says. Therefore, if a support group seems a little overwhelming to you, consider confiding in a friend or family member or visit with someone in your faith community instead.