Carly O’Brien, MSW, OSW-C, LCSW
But just what kind of help is needed, and where can patients and their loved ones find it? Carly O’Brien, MSW, OSW-C, LCSW, shared insights in a recent interview with Oncology Nursing News. O’Brien is the caregiver program coordinator at CancerCare, a national nonprofit organization that provides an array of support services to people affected by cancer.
Most cases of head and neck cancer are sparked by tobacco or alcohol use or sexual activity. Is there a stigma associated with these cancers as a result, and how should patients handle that?
There is often a lot of shame, self-blame and guilt when somebody learns of a diagnosis of head and neck cancer, and sometimes it goes so far as to prevent them from seeking out support. They may isolate, withdraw, shut down or not get connected with others who can relate. Meanwhile, many patients who don’t have a history of alcohol or tobacco use or HPV feel compelled to clear the air on that subject.
On the issue of self-blame, my advice is for patients to be honest with their feelings and seek out support. Talking about it with a professional, like a social worker, can help them to really think outside themselves, and to understand that no one chooses a cancer diagnosis and that they’re just as deserving of support and care and quality of life as someone who made different choices. Seeking professional support is a helpful way to manage those feelings, making them more tolerable.
The wide range of treatments for head and neck cancer can cause an array of potentially debilitating side effects. How can patients achieve the best quality of life possible?
I encourage patients to talk openly with their doctors about any questions or concerns about side effects — not only as they arise, but before they happen. If patients are well-informed, they tend to report that their side effects are not as bad as they were expecting, or they’ve already figured out ways to manage them on a more proactive level.
We recommend reaching out to the multidisciplinary team and getting palliative care involved in managing side effects or symptoms of the disease, and talking about palliative symptom management from day one. There is some stigma around what it means to have palliative care, with some interpreting it as end-of-life care, but that’s not the case. We are also hearing more about holistic care, like acupuncture for pain management, massage, spirituality work and emotional support, and these can help with the physical and emotional impact of the disease.
Surgery for head and neck cancer leaves some patients disfigured, which can cause depression, anxiety and isolation. How can people learn to live with these physical changes?
Adjusting to changes doesn’t happen overnight. Physical changes can be really devastating, not just to experience, but because they are visible to the outside world. That can be overwhelming and scary, and impact self-esteem and the sense of a normal life. CancerCare has good resources for one-on-one support, and there are other organizations that deal more specifically with facial disfigurement and physical changes — Let’s Face It is one (lets-face-it.org.uk).
Peer support goes a long way with this population. Connecting with a support group online, a community of others with head and neck cancer, can normalize the experience for patients and give them insight from people who’ve walked in their shoes and may be further along in the process.
For those who feel self-conscious, there are online virtual resources: Some sense of anonymity is comforting for patients struggling with self-image, because they don’t have to be physically vulnerable.
Cancercare.org has a vibrant online community, and I facilitate its head and neck cancer online support group. We link to other resources and fact sheets about coping with a diagnosis and physical changes and adjusting to weight loss. Other organizations I recommend are the Head and Neck Cancer Alliance (headandneck.org) and Support for People with Oral, Head and Neck Cancer (spohnc.org).
Reconstructive surgery may be available to some of these patients. How does that process tend to affect emotional recovery?
Surgery can bring excellent results, but we want to be honest in acknowledging that surgery is still going to be a change. The patient is never going to be quite the same. It’s important for us as health care professionals to normalize that for patients and help them manage their expectations, and also grieve the loss of what they used to look like or feel or be like, because so there’s so much loss involved, even with the most successful surgery.
How can a caregiver recognize when his or her loved one with head and neck cancer needs to seek support from a social worker or mental health professional?
It’s a real challenge. Self-determination is a blessing and a curse. Sometimes the caregiver sees things from a different perspective, sometimes more clearly and sometimes just differently. A caregiver might recognize that the patient is in distress, and can encourage him to reach out for support, but for resources to be helpful, the patient has to want that for himself or herself. I suggest enlisting the support of social workers at the treatment center and having a family meeting to check in while both the patient and the caregiver are in the room.
Even if the patient isn’t seeking out support, there is support available to caregivers. Caregivers carry a lot of burden with a diagnosis like this. They have the same worries as the patient, but also their own fears and concerns about their own lives. Getting support for themselves can help caregivers process their anger and frustration when the patient won’t reach out for support.