Successfully Navigating My Diagnosis
Laurie Levin, an anthropologist, author and web columnist, has recently been through
her own personal breast cancer journey. Her Q&A below discusses how she coped
with her diagnosis and empowered herself to successfully navigate that experience.
What were the most helpful resources to you when you first received your breast
I believe a major teaching/research medical center can offer tremendous resources
for finding the most cutting edge breast cancer treatments. I was affiliated with
one since my 1977 lymphoma diagnosis. So when I was diagnosed with breast cancer
in 2005, I was still seeing the same oncologist and in the right place. He became
involved the moment the suspicious results came from my mammography center and,
by the next day, I was in his office, scheduled for a biopsy. Less than two weeks
later I underwent a lumpectomy.
With my medical team in place, I turned to my friends and acquaintances who are
breast cancer survivors for non-medical advice and emotional support. There’s
nothing like speaking with someone who has gone through what you are about to tackle
for practical, day-to-day advice. My personal network has been a good source for
post-surgery and radiation tips, as well as helpful information about dealing with
the side effects of the aromatase inhibitor I’ve been taking for the last
five years—all of which made a huge difference in my comfort levels and recovery.
Did you experience information overload? If so, how did you manage it?
While it is important to be informed, I soon found out that the quality of information
is more important than the quantity. I decided to restrict my time on the computer
and, even then, targeted my searches to only the most reputable organizations such
as the National Cancer Institute and trustable patient advocacy sites such as this
one. Because there’s no one-size-fits all solution to breast cancer, I made
sure to double check everything I’d read on the web with my oncologist who
clarified if and how the information related to my particular case.
I also became aware that the time I was spending discussing my diagnosis—the
flood of telephone calls and conversations on chat lines—was wearing me down
and feeding, not soothing, my anxiety. By setting up a group “Laurie Update”
email to inform everyone of my progress on a regular basis, I was able to keep people
in the loop without having to continually repeat the same news over and over with
each concerned caller or e-mailer. When I requested that people not call, everyone
understood. Not only did this help clear my head, it also freed me to contact people
when I felt like it—or not at all—with no hard feelings.
At the same time, I gave myself a good talking to. The challenge was this: to stop
the doomsday chatter inside my head and rein in my worst fears. I decided that even
if I couldn’t control the outcome of my illness, I did have the power to shape
my experience of the journey. So when I was spinning out with hypotheticals or “what
ifs” I came up with a helpful personal mantra and told myself DON’T
GET AHEAD OF YOURSELF. Nothing has been more calming or sustaining, except the 100%
confidence I have in my oncology team.
Where did you turn in order to help inform your treatment decisions?
The more I find out about breast cancer, the more I am staggered by its biological
complexity. That scientists and physicians know as much as they know is humbling;
that they can do as much as they do is inspiring. I knew I was in good hands with
my oncologist—after all he’d saved my life once before (!)—and
I trusted he would guide me to my best treatment options. But I wasn’t passive
and insisted he explain enough to me so I could feel comfortable and confident with
each decision. As always, he answered my questions and the advantages and limitations
of each treatment option every step along the way.
How did you partner with your health care team to come up with a treatment plan?
How did you decide whether or not to get chemotherapy, radiation, or other therapies?
My treatment options were quite constrained given my complicated health history.
After it was determined I was eligible for a lumpectomy, my next hurdle was whether
I would benefit from chemotherapy. Because I’d already reached my lifetime
doses of certain drugs used to treat my lymphoma 30 years prior, receiving some
of these same agents again placed me at higher risk for some life-threatening side
Fortunately, my knowledgeable oncologist told me we could personalize my treatment
and I was eligible for Oncotype DX®,
a test that would indicate whether I would benefit from chemotherapy or not. The
moment I received the results, I felt I'd been given my life back. My low Recurrence
Score® replaced my fears with reliable, scientific information upon which to
confidently base the decision to skip chemotherapy. The test results also gave me
the courage to believe I might be and stay healthy in the future.
What are some of the challenges you faced in discussing your cancer diagnosis with
family members, loved ones, friends, and colleagues? How did you overcome those
Going “public” with a cancer diagnosis is a delicate matter. Mention
the C-word, and a death bomb drops – some people freeze in their tracks, others
dive for cover and a few dig in to lend a hand. All I really needed was to be heard,
but I quickly learned not everyone was prepared to listen. The last thing I needed
was to have to deal with someone else’s fears about what they thought was
going to happen to me. I had enough on my plate.
My strategy was this: spare the details and reap the relief—choose who you
tell, when you tell them and what you tell them carefully. Crafting a 'no-frills'
version was my best solution. I'd elaborated if and only if I felt the person I
was speaking to was ready to hear more. I trusted my intuition and followed it.
Over time and as I began to recover, I tired of hearing myself talk about breast
cancer. Once I stopped feeling the need to speak about it—not that it was
a secret or something I was ashamed of—I knew I was healing and ready to help
What is the most important piece of advice you can offer other women to make sure
they feel confident and empowered through their diagnosis and treatment?
Self-care is an absolute must during treatment, recovery, and beyond and this translates
into different things for each woman. For me, it meant getting more rest than usual
and not making any excuses. It meant making sure I was eating well, even when I
didn’t have much of an appetite. Not just my usual healthy diet, but one that
addressed the special repair demands that surgery, anesthesia and radiation made
on my body. And it meant, continuing to exercise but modifying my program in keeping
with my recovery process. During my six weeks of radiation, for example, I reduced
my normal hikes to shorter walks around the block and I didn’t push back to
my former levels until my energy returned.
I also discovered how simple pleasures are healing and I often tapped into personal
favorites for well deserved breathers. Whatever gave me joy I did (and do!): dining
with close, loving friends, seeing a good movie, immersing myself in an engaging
book. And, I threw small indulgences into the mix whenever possible – giving
in to a morning cinnamon twist en route to radiation or picking up a bouquet of
cut flowers on the way home. Above all, I was kind, patient and good to myself.
Were you able to keep up with your daily routine? If so, how did you manage it?
When my daily routine felt overwhelming, I accepted offers of help from family members
and friends. Life's small tasks and familiar rhythms take the edge off my worries
and when I couldn't do them, others did. This took many forms such as driving me
to a treatment, watering my garden, or picking up some take-out food if I was too
tired to cook after radiation. Allowing people to lend me a hand was far better
than receiving a get-well gift or a card. By welcoming assistance, I avoided over-extending
myself and was able to keep my everyday life on track. For that I am grateful.
Maintaining my work schedule was another area of my life where I knew it wasn't
going to be business as usual. Before informing my employer of my changed health
status, I thought carefully about my priorities. I wanted to protect my job, honor
the demands of my treatment, and ask for understanding, but not necessarily emotional
support—I already had all I needed from my husband, family and close friends.
So when we met in her office, I stuck to a simple explanation of my medical situation,
stripped of embellishments. Much to my relief, our exchange quickly shifted from
my illness to how we'd work together during my treatment. We agreed to draw on flex-options,
post-surgery and during radiation and/or chemo, teleconferencing instead of attending
project meetings and telecommuting from home when I couldn’t make it into
work. I also agreed to update her as to any changes in my treatment plan or prognosis
that might stand in the way of making good on my obligations.
What To Do When You Are Newly Diagnosed With Breast Cancer
Lillie Shockney, RN, is the Administrative Director of the Johns Hopkins Avon Foundation
She is also a breast cancer survivor and is the author of "Breast Cancer Survivors'
Club: A Nurse's Experience."
As someone newly diagnosed with breast cancer, what do I really need to know?
Though breast cancer remains the most feared disease of all women, it has more happy
endings than sad ones. Today, 85% of women diagnosed with breast cancer will be
long-term survivors like me. I just hit my 17 year mark! Additionally,
80% of women are good candidates for
lumpectomy surgery and don't have to lose their breast to this disease.
For those who do need mastectomy
surgery, there are multiple reconstruction techniques that offer an impressive cosmetic
outcome. These techniques include skin sparing mastectomy (Surgery that involves
removing all of the breast tissue, but only the skin of the nipple, areola, and
the original biopsy scar from the breast. This preserves as much of the breast
skin as possible and allows for an immediate reconstruction.), nipple sparing mastectomy
(Surgery that removes all of the breast tissue but leaves the nipple alone.), DIEP
flap (A type of breast reconstruction where blood vessels and the skin and fat connected
to them are removed from the lower abdomen and used for reconstruction.) and S-
GAP (A type of breast construction where fat and skin from the upper buttock are
used for reconstruction.) reconstructions.
What is your best piece of advice for someone who is newly diagnosed with breast
Almost all patients have time to gather information, empower themselves with it
and make good decisions about where to seek treatment. Though you may have just
heard the words "you have breast cancer," in most cases the cancer has been there
for several years. You have time to develop a treatment plan. That doesn't mean
you can leave for a 6-month cruise! It does mean it's okay to take several weeks
to get your consultations and empower yourself with valuable information so that
you can confidently embark on your treatment plan.
What do you wish someone had told you when you were diagnosed?
That we are not alone... and that this is "doable." For a few hours or even days,
people with breast cancer can feel like they are about to travel a scary journey
alone. But the truth is, there are nearly 3 million women in the U.S. who are breast
cancer survivors like I am. Some organizations provide survivor volunteers for one-on-one
Also, I encourage people to seek out a breast center that addresses you as a whole
person. You are not just a Stage IIb breast cancer patient - you are a woman, in
her mid-forties, who is a school teacher, has a mother who you care for in your
home, is divorced, has a teenage son who is driving you nuts, and you are worried
about your finances due to potential time missed from work as a result of needing
breast cancer treatment. You need your physical and psychological needs addressed.
You are a package. Handle with care.