Your doctor tells you, “You have cancer.” What’s next?
By Linda Melone.
For Sharon Blynn, severe stomach pain was the first sign of something amiss.
She blamed the sharp pains across her abdominal area on drinking too much orange juice. When the attacks began lasting up to 18 hours, however, she sought help from a gastroenterologist. “He told me I had irritable bowel syndrome,” says Blynn.
After a week of following a very strict diet, she had another attack. Blynn then wondered if the problem was gynecological in nature; one doctor thought she might have either endometriosis or fibroids. She had neither.
When her next doctor suggested she seek help from an oncologist, Blynn knew he suspected cancer. “I tried to put it out of my mind,” says Blynn, 28, a women’s cancer awareness advocate who splits her time between Los Angeles and New York City. “My doctor said there was no way to know what was going on unless he went in surgically.” A fertility specialist and oncologist performed the surgery together, prepared to take whatever approach they deemed necessary based on the results.
They found a large tumor on Blynn’s right ovary that also affected her bladder. A cancer diagnosis of any type is frightening but ovarian cancer is especially deadly: Although accounting for only about 3% of cancers among women, it causes more deaths than any other malignancy of the female reproductive system, according to the American Cancer Society.
Vague symptoms such as bloating and the abdominal pain Blynn experienced are often the only signs, making a late-stage diagnosis more likely.
First Steps
A cancer diagnosis is a life-changing event. The initial fear of what lies ahead, on top of the many decisions that must be made—often quickly—can make taking the next step even more intimidating.
To create a central point of contact for patients, hospitals now often use nurse navigators or care coordinators, and professionals trained in coordinating care between doctor and patient. By translating complicated instructions, setting up tests (such as biopsies) and otherwise acting as a liaison between the patient and doctor, a nurse navigator also helps the patient coordinate his or her care when dealing with multiple providers.
Stacey Ferrante, RN, MSN, OCN, lead nurse navigator for the Cancer Prevention and Treatment Center at St. Joseph Hospital in Orange, California, helps newly diagnosed cancer patients assemble their healthcare support team. “It starts with the primary care doctor who ordered the original lab tests,” says Ferrante. “That person then refers you to a specialist such as a medical oncologist, if they think it’s cancer, or breast surgeon, etc., depending on the type of cancer.”
Ferrante refers to herself and other nurse navigators as the “center of the wheel,” communicating with the doctors and acting as the “glue” for the program. They also help patients interpret information and dispel unfounded fears.
“The first time a person is told they have cancer it could be two weeks before they get to see their actual doctor,” says Ferrante. “In the meantime they talk to neighbors and go online and find out a lot of misinformation. Even reputable websites may have only some of the necessary information, which creates unwarranted anxiety.”
Creating a healthcare team includes getting the following people on board, says Ferrante:
• Social worker: helps in dealing with lifestyle and social changes
• Dietitian: determines nutritional needs or tube feeding if necessary
• Oncologist: determines and provides chemotherapy approaches
• Radiation oncologist: if radiation is required
• Surgeon: if surgery is part of the treatment; they specialize in various areas
As for choosing a doctor or other specialist, “most decisions are insurance-driven,” says Ferrante. Nurse navigators such as Ferrante can offer advice and recommendations for doctors they feel may work best for a particular patient’s needs.
Integrative Medicine Options
Acupuncture, herbal therapies, also music therapy, Reiki and other practices can be incorporated into a care plan, but these are best used in combination with traditional medications and approaches, says Ferrante. “Also, these must be first discussed with your doctor, as some herbs can interfere with chemotherapy.”
If a patient has gone through all standard treatments or is having many side effects it may be helpful to consider integrative therapies, says Mahesh Seetharam, MD, medical oncologist with Arizona Oncology, which has locations throughout the state. “Although if you’re dealing with a cancer with a high rate of cure, such as testicular cancer or lymphoma, and you’re considering alternative therapy, I consider that an inefficient approach. But if you tried four or five other treatments and you’re not getting better, integrative therapy may be an option to try.”
Blynn used a combination of traditional surgery, chemotherapy and hormone replacement along with Chinese herbal medicine, acupuncture, yoga and meditation, which she credits for her being in remission more than 13 years. “I call it my everything-and-the-kitchen-
An integrative approach also worked for Leslie Kibota, 54, of Fountain Valley, California. In early 2015, Kibota went to her doctor after experiencing pain in her side and lower back. After ruling out kidney infection and diverticulitis, doctors sent her for a CT scan, which revealed cancerous lesions on her spine.
“The doctors told me you can’t get cancer of the spine, it always originates from another part of the body,” Kibota says. Although they suspected lung cancer (Kibota gave up smoking the year before), doctors could not find the original site, declaring it a cancer of unknown primary or CUP.
Since knowing the primary site enables doctors to determine the best course of treatment, a targeted approach was not possible (the original site has never been determined). “I had to move fast since the cancer had spread to my spine, a dangerous area,” Kibota says.
Treatment involved two different types of chemo to target all of Kibota’s organs; she sought a second opinion before the second round. “The new doctor recommended the same course of treatment I was on except for the addition of a trial drug that had scary side effects, so I stayed with my original oncologist,” she recalls.
Kibota worked with a nurse navigator, who helped her decide on a radiologist and oncologist. “I did not consult with a nutritionist, though,” she says. “I just ate what tasted good. But everything tasted like metal.”
Through her own research, Kibota found an acupuncturist she thought might be able to help. After her oncologist gave her the go-ahead, Kibota began receiving treatments three times a week. To her and her oncologist’s amazement, tumor markers (substances produced by cells in response to cancer that indicate cancer activity) that had been stagnant for a while began to drop.
“My oncologist could not believe it. The acupuncturist told me the treatments wouldn’t ‘cure’ the cancer but it would help my numbers go down, and they did. I am a believer,” Kibota says.
She also drank tea made from freshly crushed turmeric root, noting, “It seemed to give me energy and ease my nausea.” Now in remission, Kibota plans to continue with an occasional acupuncture treatment as part of her ongoing self-care.
If you want to try an integrative approach such as acupuncture, herbs or spices, your oncologist may be hesitant if they’re not up to date with all the research, according to Ajay Goel, PhD, director of epigenetics and cancer prevention at Baylor University Medical Center in Dallas. “Safety is the biggest concern along with effectiveness. You can’t assume it’s all safe,” says Goel.
In-Home Help
Dealing with a cancer diagnosis is very stressful both for the patient and family, before, during and in the aftermath, especially the initial 100 days, says Julia Bucher, RN, PhD, associate professor of nursing at York College of Pennsylvania and co-editor of American Cancer Society Complete Guide to Family Caregiving: The Essential Guide to Cancer Caregiving at Home (American Cancer Society).
Answering calls coming into the home and sending thank-you notes for flowers, food and gifts can be overwhelming. Plus, managing everyday household needs, such as cleaning, child care, buying food, doing laundry and preparing healthy meals, can all add to stress. In many parts of the country cleaning services for people with cancer are offered free of charge. Websites such as mylifeline.org, cancercommunitycenter.org andcleaningforareason.org, for example, all offer free services and help for cancer patients.
A visit with a social worker may be offered but often does not happen right after a cancer diagnosis, says Bucher, who adds, “As with any other chronic disease diagnosis, most families cope on their own.” They may also find support through online discussion forums with others in similar situations or through in-person groups through the American Cancer Society (cancer.org).
At other times it helps to talk with veterans or survivors of a cancer like theirs, says Bucher. “Nurses can be a source of emotional support, although they are not usually found at home unless the person gets a visiting nurse referral for home help of some kind, such as a dressing change, lab work or medical instruction.”
Relying on close friends and family is usually the most sought-after help. Church members, neighbors and friends from work or other social groups are also often asked to lend a hand.
“Different people bring different skills to help, so people with cancer and their families may need various types of help at different stages of cancer,” says Bucher. “Many helpers can lend an ear, too, and offer good wishes and listening support.”
Deeper emotional support can be tougher to find. Ideally, the patient and immediate family members should each have one trusted confidant to stay in touch by telephone or on the computer if not in person. Professional help is available but is not a free service until hospice services visit the home, says Bucher.
“It’s important for families to agree that using practical and emotional help from others does not signal weakness or that they themselves cannot cope,” says Bucher. “Home-based support for the whole family helps the person with cancer know that networks are there to strengthen all of them and knowing this is, in itself, an intervention.”
It is easy to feel overwhelmed by a cancer diagnosis. That’s why putting an action plan together that covers all aspects of treatment and daily living concerns is important.
Finding a Complementary Practitioner
The best way to start looking for an acupuncturist, herbalist or other practitioner is the same approach to finding an expert in any field: personal referrals, including anyone your conventional doctor may recommend. Keep in mind, though, that just because your best friend raves about someone doesn’t mean that professional is the best choice for you. Try to set up an initial appointment in which you can ask the practitioner about his or her training and experience—especially in consulting with cancer patients—and to get a sense of how that person may fit into your healthcare team. Another way to find someone is through practitioner associations like the ones listed below; they all have Find a Practitioner links (sometimes under another tab).
| American Association of Naturopathic Physicians www.naturopathic.org |
Training similar to conventional MDs but focused on natural therapies; can also search through state associations |
| American Association of Acupuncture and Oriental Medicine www.aaaomonline.org |
Both acupuncturists and professionals licensed to practice both acupuncture and Chinese herbology |
| American Herbalists Guild www.americanherbalistsguild. |
Practitioners of Western botanical medicine; some may include herbalism from other traditions as well |
| American Massage Therapy Association www.amtamassage.org |
Listed professionals offer various types of massage (i.e., Swedish, deep tissue) and similar forms of bodywork |
| National Association for Holistic Aromatherapy www.naha.org |
The use of essential oils to promote health and well-being, often as part of services such as massage |
| National Ayurvedic Medical Association www.ayurvedanama.org |
Practitioners of India’s system of traditional medicine; based on keeping one’s basic constitution in balance
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Linda Melone is a certified trainer and a health and fitness writer. ALSO In addition to Prevention, she writes regularly for Health, Livestrong, Shape, NextAvenue and many others. She lives in California but pines for her New York roots. Follow her on Twitter: @LindaMelone or visit her at www.LindaMelone.com.
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