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Adopting after cancer

BY GUEST BLOGGER | JUNE 22, 2010

When I turned 37, I didn't celebrate with cake and champagne. Instead, I spent the morning of my birthday tossing down a Tang-colored cocktail of Adriamycin and Cytoxan at Sloan-Kettering's breast center on 64th Street in New York. Not exactly what I had planned.

A few months earlier, my husband Evan and I had come home from a romantic vacation to Hawaii, ready to celebrate our upcoming first anniversary by throwing away my birth control pills and getting serious about trying to conceive our first child. After all, I wasn't exactly getting any younger, and the clock was ticking. But when I could no longer tell myself that the hard lump I felt in my breast was just something to do with my period and would soon go away, all those plans were thrown out the window.

Instead of getting an ultrasound to check on a growing baby, I was getting one to make sure I didn't have liver metastases. Instead of seeing an ob-gyn or a midwife, I was seeing an oncologist. Instead of wondering what my baby would look like in nine months, I was wondering what I'd look like in nine months. Would I have hair again? Would I even be here?

As Evan and I learned to navigate the strange new world called Cancerland, we also had to figure out what we wanted to do about our plans to have children. Obviously, they had to go on hold for now--but what about later? Would I be able to get pregnant after breast cancer treatment? Should I? Did I want to?

Many women who have cancer still don't even get the information they need to think about making that choice. Even though the American Society of Clinical Oncology issued recommendations in 2006 that urge their members to discuss fertility preservation with younger patients as early in the course of treatment as possible, many doctors--about a third of them--still don't do that. And a national survey presented at ASCO in 2009 found that among the 2/3 that do, less than 25 percent referred their patients to a fertility specialist, or provided educational materials about what risks cancer treatment might pose to fertility and what options patients might have.

Luckily, I didn't have one of those doctors. My oncologist talked with Evan and me at length about what my chemo regimen might do to my fertility. At 37, she told me that the evidence indicated that I had about a 50-50 shot of retaining my fertility after treatment. Women closer to 30 were much better off, while the closer you got to 40, the worse your odds became.

She offered to refer me to a specialist on fertility and cancer, so that Evan and I could retrieve eggs before treatment, fertilize them, and freeze embryos until we were ready to become pregnant.

I said no.

Why? It's hard to explain. Part of it was just a sense of being totally overwhelmed. I was going through what seemed like a million tests a day: biopsies, more biopsies, MRIs, more MRIs, bone scans for bone mets, ultrasounds for liver mets, MUGA scans for heart function, CT scans for...hell, I don't remember what. I was drinking barium and having enough blood taken to supply an entire season of Buffy the Vampire Slayer. And I knew that this was just the beginning--that the diagnostic and preparatory merry-go-round would seem like a day at the beach once chemo and radiation started.

So part of me just couldn't face still more tests, more procedures, more medications, more doctor's visits.

Another part of me was terrified at the prospect of becoming pregnant after breast cancer. I knew a little about what research said about this issue--that small studies showed that there was no additional risk of recurrence if you got pregnant after completing treatment. But I couldn't help worrying that maybe those studies just weren't big enough. Maybe they'd missed something. And I didn't want to go through this twice.

Making that decision wasn't easy. Evan and I had probably the biggest fight of our marriage in the car on the way home, with him frustrated that I was ruling out what might be our only chance for biological children, and me emotionally overwrought and feeling like he was putting his desire for kids ahead of my health.

But we got past it. And we realized that what we both wanted was to be parents--however we got there. I spent the better part of my "cancer year"--that ugly year of 2004--researching adoption options, so that when I was declared cancer-free, we were ready to start the adoption process immediately. I finished radiation in December and we began the paperwork in February. Exactly one year later, our beautiful daughter, Annika, was born, and we were in the room with her birthmother when she entered the world.

And then, the astounding happened. When we were ready to give Annika a sibling, we decided to throw caution to the wind and try to get pregnant first. I'm not sure what gave me the faith to do it--maybe it was those beautiful words I heard after my lumpectomy, "pathological complete response to treatment." Maybe it was just time healing fear as well as wounds. But for whatever reason, we decided to try--and damned if I didn't get pregnant that first month. Our son, Adrian, is now two, and at the decrepit age of 43, I'm about to give birth to another daughter. (We're done after this one!)

During all this, I've spent a lot of time talking to other cancer survivors who've built their families after their diagnosis--through adoption, fertility preservation, surrogacy, and just plain old getting pregnant the old-fashioned way. I've learned one essential truth: If you have love to give to a child, there is a path to parenthood for you, even as a cancer survivor. Even if people tell you there isn't. It may be harder than the one your friends take. (Okay, a lot harder.) It may be totally different from the one you envisioned at 12 or 25. But it's possible. And it's worth it.

Gina Shaw is a six-year survivor of breast cancer. She and her husband, Evan, live in Montclair, New Jersey, with their two children and newborn daughter, who was born June 17. Her book, Having Children After Cancer: How to Make Informed Choices Before and After Treatment to Understand Your Options and Build the Family of Your Dreams, is due out in Spring 2011 from Ten Speed Press/Random House.

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Breast cancer in rural and urban areas

BY GUEST BLOGGER | DECEMBER 10, 2009

Every year, CURE invites one advocate who is attending the San Antonio Breast Cancer Symposium to serve as a guest blogger. This year readers will be hearing from Bev Parker, PhD, a 24-year breast cancer survivor who is attending the symposium for the seventh year.

The symposium got underway this morning with 9,000 participants, according to welcoming comments by C. Kent Osborne, MD. The day was filled with reports of fascinating research. I'll highlight the first plenary, which I found most noteworthy, and add some interesting points from other presentations.

The opening plenary was a lecture given by Valerie Beral, MD, of the University of Oxford. She discussed an epidemiological perspective on the causes and prevention of breast cancer. Rural areas in the world have much less breast cancer, but diagnoses increase rapidly with urbanization. Today, one million cases of breast cancer are diagnosed every year throughout the world. At the current rate of urbanization, that number is expected to be two million by 2040.

In rural areas, women on average have more babies, have them at younger ages, breastfeed more often, and breast feed longer than women in developed countries. Dr. Beral concluded that the incidence of breast cancer would be halved in developed countries if women maintained the same childbearing and lactation rates as those in undeveloped countries. She said that childbearing, lactation, and nutrition account for most, if not all, of the international differences in the incidence of breast cancer.

According to Dr. Beral, women in developed countries will not change their childbearing and lactation rates. However, if they maintained healthy BMIs, did not take hormone replacement therapy, and did not drink alcohol, breast cancer diagnoses would be reduced by 20 percent. To address childbearing issues, Dr. Beral stated that short-term exposure in early adulthood to hormones of late pregnancy and lactation would give lifelong protection against breast cancer. She suggested that developing a hormonal vaccine to be given at that point of life should be a goal for the large-scale prevention of breast cancer.

Below are some quick nuggets of information gleaned from various other presentation scattered throughout the day:

>BIG 1-98 showed prolonged overall survival, after a 76-month update, for women who switched from tamoxifen to letrozole after 3 to 4 years.

>The LACE study reported that 3 to 4 alcoholic drinks per week is associated with an increased risk of primary breast cancer in postmenopausal, overweight, and obese women.

>Women with a BMI greater than 25 have significantly high rates of breast cancer recurrence and death.

>Bisphosphonate use is associated with a 30 percent reduction in the risk of postmenopausal breast cancer after one year of use, and breast cancers that develop while taking bisphosphonates have a better prognosis.

>25 percent of breast cancer that is ER-negative at diagnosis can change to ER-positive at recurrence.

More tomorrow!

To read more articles from CURE's coverage of SABCS 2009, visit sabcs2009.curetoday.com.

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In Other Words ... Communicating When Naked--My Perspective as a Patient

BY GUEST BLOGGER | DECEMBER 3, 2009

Helen Osborne, MEd, OTR/L, is a breast cancer survivor and the president of Health Literacy Consulting

Talking about health and other medical matters had always been easy for me. As an occupational therapist and health-literacy consultant, I felt confident and in charge of conversations no matter which professional hat I was wearing. But after a routine mammogram turned out not to be so routine, I felt more than hatless. I felt naked. Now I had to communicate not as a provider or consultant, but as a patient.

The diagnosis was DCIS (ductal carcinoma in situ, a very early-stage of breast cancer). Ironically, this was a condition I knew a good deal about. The year before, I'd written the National Cancer Institute booklet "Surgery Options for Women with Early Stage Breast Cancer". But as a patient, I became easily overwhelmed talking with doctors about my diagnosis and treatment options. Since the conversations concerned me directly, I was often so flooded with emotion that I had trouble thinking and remembering.

Conversations eventually got easier, and over time I learned what I needed to learn. I also learned, through no choice of my own, about being a patient. Here are some of the lessons I came away with after communicating "naked." Understanding them, whether you're a patient or a provider, can make a difference in how each of you works with the other.

What Patients Need to Do

Show up. This sounds so simple yet can be so hard to do. As a patient, it takes courage to show up for medical appointments when fearing news you don't want to hear or dreading procedures you don't want to have. I'd muster courage by asking my husband or friend to go with me, or having a private "pity party" before appointments and then rewarding myself later for showing up.

Some of the most courageous women I've ever met sat beside me in the waiting room when I went for radiation treatments. We chatted, but usually not about our diagnoses or prognoses. Instead, we talked about the ordinary parts of our lives, such as our commute that morning or what we did over the weekend. We supported each other yet didn't need words to share our experiences as patients.

Create your own medical record. As a health-literacy consultant, I sometimes speak to consumers about health communication. One recommendation I make is that people create their own notebooks with important medical information. But did I take my own advice? No, at least not until it felt like medical matters were way out of control. Creating my own medical record turned out to be one of the most important things I did. My medical record is in a three-ring binder that includes:
     >Medical reports. I included copies of pathology reports and discharge instructions. Having these so available not only helped me but, at times, also my providers. I remember an early-morning procedure that was almost delayed because the specialist didn't have (or couldn't find) a copy of my surgeon's referral. But thanks to my notebook, I had a copy of the report she needed.
     >Doctors. I had so many appointments at different facilities that sometimes I felt like a "secret shopper" of medical matters. To keep track of all these providers, I had a section in my notebook for information about each doctor, including a photo (if available), contact information, and directions to his or her office.
     >Questions. At home, I could think of lots (and lots) of questions I wanted to ask my doctors. But when wearing just a hospital johnny, I struggled to remember any of them. To help, I would make a list of all my questions beforehand so that later all I needed to do was write down the answers.
     >Notes to me. I found it comforting to write occasional notes and stories about how I felt and what I observed. Not only did they defuse my emotions at the time, but now these notes serve as powerful reminders of my patient experience. I didn't know then what I would do with them, but now they're the core of what I'm writing to you.
     >Important papers. Many providers asked me similar questions about medications and allergies. I got tired of repeating myself, and so I made a master medication list which each office could copy. I also kept my signed healthcare proxy in the notebook for any health provider who requested it.
     >Kind words. People were amazingly wonderful. I treasure their support and caring, though honestly couldn't always remember who did what. To help, I made a list of their gifts and other niceties with space to note when I thanked them.
     >Zippered pouch. I found that a three-hole-punch zippered pouch was a most handy addition to my notebook. I used it as a catch-all for my patient identification cards and doctors' business cards. And when I got tired of fumbling around for a pen to take notes during appointments, I added one to my trusty zippered pouch.

Learn only as much as you want to know. What probably surprised me most during this time was that, as a patient, I did not want a lot of "outside" information from the Internet or books. I trusted my doctors to tell me what I needed to know. I also found outside information somewhat scary, as I tended to focus on the worst-case scenarios. I checked with other patients and learned that many of us set limits on how much information we want to have.

Be in charge of communication. Life changes forever when you are diagnosed with a serious illness. But I knew from the start that I did not want this diagnosis to be my sole identity. Being in charge of communication was an important way for me to preserve my sense of self. One way I did so was with something I called "breast-free zones." These were times (often at meals) I opted to discuss topics other than my anatomy. Setting limits on the conversation not only helped me but also others who worried about what to say.

Another way I was in charge of communication was by sending out periodic group emails to family and friends with updates about my medical matters. For the sake of everyone's privacy, I entered their addresses as "bcc" (or blind carbon copy) so others could not see who I was writing to.

Be nice to yourself. Similar to the story of Hansel and Gretel, who marked their path with breadcrumbs, I placed treats along my treatment path. Some were small, such as buying my favorite coffee on the way to radiation treatments. Other treats were bigger, including a celebratory party to toast good friends and good health.

Reprinted with permission from On Call magazine and published by boston.com/Monster, a division of Boston Globe Media. You can find all of Osborne's articles at the Health Literacy Consulting website, www.healthliteracy.com.