For this month’s cover story, we talked with a variety of experts on these cancers, and they all agree that to successfully identify and treat them, “knowledge is power.” Whether it’s a myeloproliferative neoplasm or a slow-growing neuroendocrine tumor, understanding the symptoms of rare cancers is paramount. As Mount Sinai Hospital’s Dr. Richard Warner, an expert on carcinoid and neuroendocrine tumors (NETs), wisely points out: “If you don’t suspect it, it you can’t detect it.” NETs, for example, bring symptoms like diarrhea and flushing which are common in many other conditions, and can sometimes be misdiagnosed for years.
Diagnosis is only the beginning. Once a rare cancer is identified, finding specialist guidance and resources is critical not only for the practitioner, but also for the patient and caregiver, who need places to turn to for reliable information and to find individuals to share their experiences with through online communities and support groups.
In some of these rare cancers, misunderstanding and even stigma add yet another layer of complexity. As Oncology Nursing News Editor-in-Chief Lisa Schulmeister writes in her column this month, “Not So Pretty In Pink,” although diagnosis and treatment of male breast cancer is similar to that of breast cancer in women, the experience of breast cancer among men is very different. These men often feel very alone, having a diagnosis which accounts for only 1% of all breast cancers. Similarly, as nurse and anal cancer survivor Michele Longabaugh writes in her guest column, “What I Wish My Nurse Knew About Anal Cancer,” she had no idea how isolating being diagnosed with a rare cancer could be, but that “pales in comparison to the ‘solitary confinement’ that a stigmatized cancer like anal cancer can carry.”
A feeling of isolation is not unique to the rare cancer experience. Also in this issue, we talk with sexual health and survivorship expert Dr. Michael Krychman about the impact of cancer on intimacy. Krychman urges nurses and other clinicians to raise these issues with patients and survivors during clinic visits, because doing so can yield relatively simple solutions to improve their quality of life.
As always, we welcome your suggestions and feedback on our coverage, and thank you for reading.