A Cancer Action Plan
Your doctor tells you, “You have cancer.” What’s next?
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.
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, 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,
• 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
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, 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
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-sink approach,” she says.
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
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.
Dealing with a cancer diagnosis is very stressful both for the patient
and family, 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
cleaningforareason.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.