Living Through Cancer
When Samantha Lozier was diagnosed with ocular melanoma at 28, she was enjoying the New York single life. Despite her excellent medical care, only one doctor talked to her about what her life would be like after cancer. When her treatment ended, putting her in remission, she longed for normalcy and got back into the swing of working, dating, and traveling as soon as she could.
Eight years later, her cancer spread to her liver and everything changed. Because Lozier now has Stage IV incurable cancer, she has made some changes so that she’s not focused on being a patient but rather as a person living with cancer.
This attitude is in part thanks to the doctor who talked to her about life after cancer, because he was supportive in her living her life. “What I loved about his helping me to look towards the future was the hope that it instilled in me that there would be a future,” says Lozier.
All too often, doctors focus on treating the disease instead of the person with the disease, says Shelley Fuld Nasso, CEO of the National Coalition for Cancer Survivorship (NCCS), which advocates for quality cancer care for everyone touched by cancer.
And when it comes to women, it’s important to consider all aspects of womanhood when dealing with cancer, says Dr. Mercedes Castiel, MD, director of the gynecological survivorship program at NYU Langone Medical Center. “Women should not only be able to survive cancer, but also live through cancer.” This means addressing issues specific to women that can be affected by the diagnosis.
Ignoring women’s needs
A cancer diagnosis is overwhelming, which often leads to everything else falling by the wayside. This can include fertility, which should be discussed at the time of diagnosis. Dr. Castiel says that healthcare providers need to be the objective voice as patients with a new diagnosis aren’t thinking long-term for when they’re cancer free.
If female patients are afraid to ask questions about sex, fertility, or menopause, the provider should open up the dialogue, says Dr. Castiel. Thankfully, women are growing more comfortable in expressing their concerns.
Changing face of healthcare
The good news is that more healthcare providers are aware of this need, and medicine is now focused on the whole, not just a disease, Dr. Castiel says. But there’s always the issue of having the time to ensure this happens. That’s why most medical care is a multidisciplinary process. Providers should know who to refer patients to beyond their areas of expertise.
Additionally, new standards in cancer care call for routine distress screening with every patient throughout their experience, says Dr. Alyson Moadel-Robblee, director of psychosocial oncology, Montefiore Einstein Center for Cancer Care. The emotional needs of patients are assessed and addressed several times to ensure that their quality of life is given as much attention as their treatment, she says. “While not all cancer centers are meeting these standards today, women should know that they can ask for support and referrals to help them manage their distress and that such help is available in many forms including telephone, Internet, and support groups,” says Dr. Moadel-Robblee.
A growing number of medical communication training programs are teaching physicians how to discuss these more personal issues in a way that allows patients to feel comfortable asking questions and seeking more specialized help, she adds. Wellness programs for providers are key, she says, because they teach the importance of self-care, which may in turn raise awareness of patients’ psychosocial needs.
When Shelley Sherman was diagnosed with breast cancer, an experienced and professionally trained Oncology Nurse Navigator met with her many times and spoke with her on the phone often. She would also come and see Sherman during chemo and was always there for her. If Sherman had any questions, the navigator would answer them. Sherman calls the navigator a vital part of her treatment and a guardian angel.
This proactive approach has proven successful. Survivorship programs are also becoming more common. Ultimately it boils down to patients needing to advocate for themselves to ensure they’re receiving the best care that matches their values and needs, says Nasso. NCCS has developed tools to help cancer patients take charge of their care and communicate their goals to providers, family, and friends.
Dr. Moadel-Robblee feels that women who are newly diagnosed should be directed to peer counseling/navigation programs where trained cancer survivors are available and eager to provide wisdom, compassion, and support. Montefiore started the BOLD (Bronx Oncology Living Daily) Buddy Program, a peer navigation program that has resulted in an increase in accessing services to manage quality of life concerns. It has also led to reduced isolation and loneliness, improved adherence to treatment, and even a profound sense of gratitude and connection that wasn’t experienced before, says Dr. Moadel-Robblee.
Suburban Hospital – where Sherman was treated – has had a Living With Breast Cancer symposium for 18 years. The free half-day event is open to all breast cancer survivors (no matter when they were diagnosed), family, and friends, and addresses survivorship needs. “At Suburban, we feel that the quality of survivorship and not just quantity (years since diagnosis) is very important,” says Judith Macon, RN, MA, manager of Cancer Outreach and Education. “Since more women are living many years beyond their diagnosis, quality of life is essential.”
Ideally, everything comes together as one, as Elisabeth Small experienced when she was diagnosed with breast cancer. She connected with Windsong Radiology and CCS Oncology, which offered an evening of Q&A for new cancer patients and their families once a week. Attending this meeting were a medical oncologist, radiology oncologist, cancer surgeon, nutritionist, two specially trained oncology support nurses (available to be called with questions), and a representative of a local specialty store that provides certified fitters, support, and answers to all of the “what-do-I-wear” questions that were constant during treatment. At this meeting, patients were made aware of different support programs, including the American Cancer Society for free wigs, Roswell Park Cancer Institute’s “feel good” programs that show women how to put on make-up and scarves (and give away free make-up).
In some ways, Small’s life as she knew it stopped, and stopped suddenly when she was diagnosed. She didn’t know what to do to ensure she was living her life. She knew she had to be pushed to go out and see friends. She became aware that there is no “after cancer.” Having cancer became the new normal. “I might beat it, but it is always with me,” she says. “There is no ‘cancer free,’ but more of a ‘no recurrence.’” Sometimes the “new normal” is actually better, says Dr. Castiel, because it’s an opportunity to make changes, put life in perspective, move forward, and focus on what’s important.
The biggest question Lozier feared and still fears is “What if there is no life after cancer?” Before she switched to a more appropriate oncology team than where she was diagnosed, Lozier was given a life expectancy without her asking. She’s come to realize that this is her story and no one else’s. As she wrote on her blog, “My mantra? Look that monster in the eye, acknowledge that it lives, but do not let it take away your hope or your love of life, ever.”
To do this, Lozier offers some tips – which she originally put together for the Cancer Hope Network, which matches patients and loved ones with cancer survivor volunteers:
- Live with hope
- Get a second opinion
- Sleep on it
- Bring someone to each appointment
- Surround yourself with positivity
- Find something to ground you
- Be VERY careful about what you read online
A popular word among cancer patients is to refer to themselves as cancer thrivers, not just survivors. Lozier loves this term because when she thinks of cancer she thinks of feeling sick and not being able to live a full life. She has learned that “with a lot of self-care and gratitude, healthy eating and healthy relationships, a life with cancer can be just as fulfilling as any other.”