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Answers & Advice From Experts

When you've been diagnosed with breast cancer, lots of questions come to mind. You can get the information you need from a number of places—from your doctors, other breast cancer survivors, and online resources such as Breastcancer.org.

Answers & Advice is a unique resource where you'll find answers from leading breast cancer experts. Check back regularly to learn from people who work with breast cancer patients like you every day, and have the answers you need.

Podcasts

Q & A

Laurie Levin, breast cancer survivor

Successfully Navigating My Diagnosis

Q&A
 

Laurie Levin, Author

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 cancer diagnosis?

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 effects.

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 challenges?

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 heal others.

 

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.

 
Lillie Shockney, RN Administrative Director, Johns Hopkins Avon Foundation Breast Center

What To Do When You Are Newly Diagnosed With Breast Cancer

Q&A
 

Lillie Shockney, RN

Lillie Shockney, RN, is the Administrative Director of the Johns Hopkins Avon Foundation Breast Center.

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 cancer?

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 support too.

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.

 
 
 
 
 
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