Publications
Insight, Summer 2004
Read about the latest medical treatments in a Q&A with some of the country's foremost clinicians, learn about adoption opportunities after breast cancer and share in the experiences of a Latina physician living well with advanced breast cancer in the summer 2004 edition of Insight.
Table of Contents
- Letrozole Shows Promise for Post-Menopausal Women
- Diagnostic Tests and Insurance
- Is it Safe to East Soy?
- Monitoring Advanced Breast Cancer
- Symptoms of Breast Cancer Recurrence
- Follow-Up Tests After Treatment
- Iressa and Breast Cancer
- Research for New Gene Mutations
- Coping with Hot Flashes and Insomnia
- Ovarian Suppression in Pre-Menopausal Women
- Adopton: Challenges and Solutions After Breast Cancer
- Carmen Febo-San Miguel, MD: A Busy Doctor Manages Breast Cancer While Giving Back
Letrozole Shows Promise for Post-Menopausal Women
WOMAN: Tell me more about the clinical trial that showed taking letrozole after five years of tamoxifen therapy decreases the risk of recurrence in postmenopausal women.
EDITH PEREZ, MD: The data are based on a large randomized or a comparative Phase III clinical trial called MA17. This trial compared the medicine letrozole to a placebo. Letrozole was chosen because it is one of the aromatase inhibitors (AI), drugs that prevent the formation of active estrogen in postmenopausal women.
We took 5,187 women who had completed five years of tamoxifen and who were free of breast cancer, and they were divided into two groups. One group received a placebo, which is equivalent to nothing, because that was the standard of care. The other group received letrozole for a projected time of five years.
For women to participate in the study, they had to have completed tamoxifen within three months of enrolling and they had to be post-menopausal, because aromatase inhibitors only work in post-menopausal women.
The tumor had to be hormonally responsive (estrogen and/or progesterone receptor positive). The women could have had either lymph node negative or lymph node positive breast cancer. At the time of their participation in this study, the women could not be receiving any hormone treatment, such as estrogen; could not be receiving drugs similar to tamoxifen, such as raloxifene (brand name: Evista); and could not be receiving chemotherapy.
The primary end point of the study was disease-free survival, and by that we mean that group of women alive without breast cancer. The study also looked at secondary end points that included overall survival, safety and quality of life.
About 60 percent of women had very small breast cancers, measuring less than 2 centimeters, and about half had node negative breast cancer. In other words, the data from this study are applicable to node negative and node positive breast cancer as long as the tumors are ER+ and PR+.
WOMAN: What did the results show?
EDITH PEREZ, MD: 93 percent of women assigned to letrozole are estimated to be alive and without breast cancer at four years, whereas only 87 percent of those assigned to placebo are expected to be alive and without breast cancer. The difference between the two groups is 6 percent, and this difference is highly statistically significant. Also, we found that the longer women were followed, the better letrozole did versus placebo.
The data are consistent with data from another trial that evaluated the aromatase inhibitor anastrozole (brand name: Arimidex). These drugs also could be preventive drugs for breast cancer. They need to be studied further, but this information is very encouraging regarding the potential role of aromatase inhibitors. Letrozole decreased the risk of cancer coming back in the same breast, cancer coming back in other organs or cancer appearing in the contralateral [the other] breast. The data also looked at whether the benefit could be seen in patients with both node negative and node positive breast cancer, and we found that the benefit occurred in both groups of women.
WOMAN: I heard the study ended early. Why?
EDITH PEREZ, MD: We found that the difference between letrozole and placebo was so large that, statistically speaking, it couldn’t be reversed. That’s why the data were released with a median follow-up of 2.5 years instead of five years. It would have been unethical not to divulge this information, which potentially could help thousands of women.
WOMAN: Did the study look at side effects?
EDITH PEREZ, MD: Letrozole patients had some more hot flashes and some more joint aches. We did not find they had higher cholesterol levels or increased risk of cardiovascular events or heart attacks. We didn’t find increased risk of bone fractures. We didn’t find any statistical difference in terms of osteoporosis, but that we’re doing a bone sub-study [based on the findings]. We’re going to look at bone issues very carefully.
One very important fact we found is that patients on letrozole did not discontinue treatment due to side effects significantly more often than placebo patients. In other words, about a similar number of patients on placebo and letrozole discontinued because they thought they were having side effects from the medicine.
WOMAN: would you advise a woman who is two years out [from finishing] tamoxifen, doing well, and who heard about this study and wants to know, "What can I do today?"
EDITH PEREZ, MD: This study was not done for those women…so now we’re making assumptions based on what we’re doing in clinical practice. We think it is reasonable to talk to women who have finished tamoxifen within the last five years and offer them the same benefit we are offering the women who participated in the trial. However, women must understand that nobody can tell them exactly the magnitude of improvement they may derive from letrozole.
MARISA C. WEISS, MD: So the women [who were taking a placebo in the trial] who were on tamoxifen for five years and who were on nothing for up to five years are being offered the option [to take the letrozole]. We don’t know for sure if adding letrozole at this point makes a difference, but it seems to be a reasonable thing to discuss with your doctor.
WOMAN: How does bone health affect the decision to recommend a drug like Femara or another aromatase inhibitor like Arimidex or Anastrozole?
EDITH PEREZ, MD: In this study we looked at the bone issue, and we still haven’t found any statistical differences between the two groups, between letrozole versus placebo. However, we need to keep following women, so our practice is that all women who are post-menopausal and diagnosed with breast cancer should have a bone mineral analysis done, independent of what treatment they are getting.
If women are receiving an aromatase inhibitor like letrozole, we also recommend a bone mineral density on a yearly basis for the first two years to see what is going to happen because there is much that we still need to learn regarding this potential side effect.
Edith Perez, MD, is director of the Cancer Clinical Study Unit at the Mayo Clinic in Jacksonville, Florida, and a co-author of the MA17 study.
Marisa C. Weiss, MD, is a radiation oncologist specializing in breast cancer at Lankenau Hospital/Jefferson Health Systems, founder of LBBC and founder and president of breastcancer.org.
Diagnostic Tests and Insurance
WOMAN: What are the best diagnostic tools available today? Are there better tools than mammography? Will Medicare pay for these tests?
EMILY F. CONANT, MD: Mammography continues to be the only imaging tool proven to be effective in detecting cancers before they present as breast lumps that can be felt on physical exam. Mammography has an accuracy rate of about 85% and has been shown to decrease the death rate from breast cancer by early detection.
There is always room for improvement, and an 85% accuracy rate is not good enough. There is ongoing research to determine what other techniques might provide earlier detection and better accuracy (fewer biopsies of things that are actually benign). Currently, many of these screening tests are not routinely covered by insurance:
Digital Mammography. This has not yet been proved to find smaller, earlier cancers, but the technique is thought to be advantageous because the images may be manipulated on a computer screen so that, in some cases, fewer pictures are needed of the breasts. Since the images may be stored and sent electronically, there is no problem with losing films. Unfortunately, the digital equipment is very expensive and not all insurance reimburses at the higher level needed to cover this more expensive machine.
Ultrasound. This is a very important tool for characterizing areas of question on a mammogram or breast exam. Ultrasound is very complementary to mammography and is the key technique to determine whether a mass is a cyst (benign) or a worrisome solid mass (possibly cancer).
Current research hopes to determine whether breast ultrasound can be used as a screening test in combination with mammography or alone. Right now insurance covers breast ultrasound when it is used as a problem-solving test but not as a screening test.
MRI. This technique is also very complementary to mammography and ultrasound because MRI looks at the breast tissue in yet another way. MRI can be very helpful in looking at the extent (size) of a known breast cancer or in answering some questions raised by physical exam or mammography and ultrasound. Current research looks to determine when breast MRI might be appropriate for screening. MRI is very expensive, and currently insurance does not reimburse when it is used as a screening test.
Emily F. Conant, MD, is chief of women’s imaging in the department of radiology at the University of Pennsylvania Medical Center.
Is it Safe to East Soy?
WOMAN: Is it safe to use soy during and after treatment? Is there a difference for women who are ER+ and ER-?
RAYMOND CHANG, MD, FACP: Women with ER+ cancer should have absolutely no supplemental soy. Soy as in soy sauce or an occasional piece of tofu is OK, but do not consciously go on a "soy diet," and no soy milk or soy cheese.
Raymond Chang, MD, FACP, is medical director of the Meridian Medical Group, in New York, and a physician-acupuncturist trained in both Western and traditional Chinese medicine.
Monitoring Advanced Breast Cancer
WOMAN: What is a reliable indicator to monitor the effectiveness of treatment or progression of disease for a person with known metastatic disease?
KATHY D. MILLER, MD: This question is an excellent example of where there are multiple "right" answers depending on the individual’s situation. All areas of disease are the same cancer and should respond the same way to treatment. In most cases, it is unnecessary to repeat tests that evaluate all sites of disease at each visit. I generally follow the one or two areas of disease that are easiest. If there is a palpable nodule or lymph node, a simple physical examination and careful history might be all that is needed. If there is nothing on physical exam, I pick the easiest (and less expensive, least cumbersome) X-ray that clearly shows disease. While lots of other tests may show us more detail (PET scans or MRI, for instance), they really don’t provide more information or alter the therapy. For example, if a palpable lymph node has decreased in size and a persistent cough and mild bone pain have completely resolved, there is no question that the treatment is effective. In that situation, I probably wouldn’t do any X-rays.
Kathy D. Miller, MD, is assistant professor of medicine in the department of medicine, division of hematology/oncology, at Indiana University School of Medicine.
Symptoms of Breast Cancer Recurrence
WOMAN: What are the best tests to get after finishing treatment? Why? How often should they be done?
KATHY D. MILLER, MD: The answer is simple: the best guide to how you are doing really is how you are doing. In most cases, recurrent breast cancer is suspected or found by women between scheduled medical visits. Certain symptoms may indicate that your breast cancer has recurred. These symptoms may include:
—Chronic bone pain or tenderness
—Skin rashes, redness, or swelling
—New lumps in your breasts or chest
—Changes in your breasts
—Chest pain and persistent shortness of breath
—Persistent abdominal pain
—Changes in weight, especially weight loss without an intentional diet and exercise program.
It’s common to be anxious and worry that any change is because of your breast cancer. Many patients find themselves initially much more vigilant about their bodies, at times doing a "daily survey" of how they are feeling or attaching new meaning to old problems. (For example, worrying whether their back pain that hasn’t changed for more than 10 years really could be related to breast cancer.)
We find the "two-week rule" more helpful than a long list of potential symptoms or problems. You are allowed to have the minor illnesses, colds and aches and pains that affect us all. If something doesn’t get better after two weeks of rest and over-the-counter treatment, it’s time to call your doctor. Chances are the problem is not related to your breast cancer, but it’s time to check in. You and your doctor can decide together if an earlier check-up date or additional testing is needed.
Kathy D. Miller, MD, is assistant professor of medicine in the department of medicine, division of hematology/oncology, at Indiana University School of Medicine.
Follow-Up Tests After Treatment
WOMAN: So, what tests ARE recommended for routine follow-up?
KATHY D. MILLER, MD: Breast self exam: You should perform a monthly breast self exam. It will take some time to learn what is "normal" for the NEW you.
Medical history and physical exam: Your doctor will see you every 3 to 6 months for the first 2 years after your primary therapy; then every 6 months for next 5 years. After 5 years, your doctor should see you once a year.
Mammography: You will have yearly mammograms. If you have had breast-conserving surgery (lumpectomy), you will have your first post-treatment mammogram 3 to 6 months after completing radiation. We recommend mammograms on the side of the lumpectomy every 6 months for the first 2 years, then annually. If you had a mastectomy, you still need to have a mammogram of the remaining breast.
Pelvic exam: Every woman should have a pelvic exam with Pap smear yearly. This is especially important for women taking tamoxifen. Your physician will ask you about vaginal discharge or bleeding. There is no need for routine endometrial biopsies.
If you are in good physical condition and have no symptoms, no other tests are needed. Many other tests are available but none have been shown to affect survival. Some may not detect cancer when it is present or may mistakenly indicate cancer has recurred when it is not present. We don’t routinely recommend the following tests in women without symptoms of recurrence:
—Chest X-ray
—PET san
—MRI
—Bone scan
—Computed tomography (CT) scan
—Tumor markers (CA 15-3, CA 27.29 or CEA)
—Complete blood count (CBC)
Kathy D. Miller, MD, is assistant professor of medicine in the department of medicine, division of hematology/oncology, at Indiana University School of Medicine.
Iressa and Breast Cancer
WOMAN: Is Iressa showing any promise for women with breast cancer? Is it available?
RUSSEL KAUFMAN, MD: Iressa has shown some promise when combined with other agents in breast cancer. See the studies "Cooperative Inhibitory Effect Of ZD1839 (Iressa) In Combination With Trastuzumab (Herceptin) On Human Breast Cancer Cell Growth," in the January 2002 issue of the Annals of Oncology (www.annonc.oupjournals.org) and the January 24, 2002, HealthScoutNews report by Colette Bouchez, "Double Whammy for Breast Cancer."
Iressa is not currently approved for breast cancer. However, clinical trials are in progress: See San Antonio Breast Cancer Symposium, December 2002, Abstract 20 , Albain K, et al.
Iressa (chemical name: ZD1839) is an experimental medication that works against EGFR (epithelial growth factor receptor) in tumors. EGFR is like a sister to the HER2/neu protein. Researchers gave Iressa to 63 women with metastatic disease whose cancer had progressed despite different types of chemotherapy and hormonal treatment. The women were mostly Caucasian, ages 35 to 80. About half the women had HER2+ cancer and the other half HER2-. About half had hormone-receptor-positive tumors, and half hormone-receptor-negative. After six months, eight of the women (12.7%) had their disease stabilize. Others noted less bone pain. Future studies are planned to further evaluate the role of Iressa in women with breast cancer.
Russel E. Kaufman, MD, is director and CEO of The Wistar Institute, in Philadelphia, and former vice dean at the Duke University School of Medicine.
Research for New Gene Mutations
WOMAN: How close are we to learning about other breast cancer gene mutations?
SUSAN M. DOMCHEK, MD: All cancers are the result of genetic alterations in the cell. However, in some cases there is a strong inherited predisposition caused by a mutation (or spelling error) in a specific gene.
When we are born, we have two working copies of a gene. When one copy of a gene already doesn’t work, it is much more likely that the second copy will also stop working and cancer will develop. Mutations in BRCA1 and BRCA2 fall into this category and are considered "autosomal dominant" genes. If a woman has a mutation in BRCA1/BRCA2, she has up to an 80% chance of developing breast cancer. This is what we call a "highly penetrant" gene; that is, if we don’t intervene, most of the time cancer will develop.
The search has been ongoing for "BRCA3," a gene with the same type of features as BRCA1/BRCA2 (autosomal dominant and highly penetrant). So far, BRCA3 has not been found.
In addition to this type of gene, much attention has been paid to "low penetrance" genes. Several of these genes have been discovered, such as CHEK2. These genes raise the risk of breast cancer only modestly, with lifetime risks of breast cancer of 25-30%. With a mutation in CHEK2, you will likely NOT get breast cancer over the course of your lifetime, although your risk is higher than in an average woman. Research is ongoing into how to incorporate these types of genes into risk assessment and counseling, as current management is not straightforward. For this reason, testing for such genes is performed only in a research setting.
Susan M. Domchek, MD, is a medical oncologist specializing in breast cancer genetics, prevention and treatment and assistant professor of medicine at the University of Pennsylvania Cancer Center.
Coping with Hot Flashes and Insomnia
WOMAN: What are the best remedies for dealing with hot flashes and sleeping problems?
CHARLES L. LOPRINZI, MD: Estrogen therapy has been the mainstay of treating hot flashes for most women in this country for the last couple decades. Estrogen works quite well at reducing hot flashes, but there are increasing concerns about giving estrogen to women in general, and, in particular, to women with a history of breast cancer. Another hormone, progesterone, likewise decreases hot flashes substantially, but again there is concern about giving this hormone to women with breast cancer.
Over the past few years there have been three clinical trials demonstrating that newer antidepressants—such as venlafaxine (brand name: Effexor) and paroxetine (brand name: Paxil)—reduce hot flashes substantially, more than a placebo. These are relatively well-tolerated medications for many patients. Gabapentin (brand name: Neurontin) is another medication that recently has been demonstrated to be helpful for reducing hot flashes. Reductions of daytime hot flashes generally result in reductions of night sweats, allowing patients to sleep better.
Charles L. Loprinzi, MD, is a medical oncologist and professor of oncology at the Mayo Clinic in Rochester, Minnesota.
Ovarian Suppression in Pre-Menopausal Women
WOMAN: Can you tell me about the role of ovarian suppression in pre-menopausal women? Who is the ideal candidate to benefit from Zoladex? Can Zoladex stop ovary function permanently?
ELLEN CHUANG, MD: Breast cancer cells can express the hormone receptors ER (estrogen receptor) and PR (progesterone receptor). Cells that express these receptors are likely to be dependent upon estrogens for their growth, and withdrawing estrogen can lead to cancer cell death.
In pre-menopausal women, the ovaries are the major source of estrogen, with the adrenal glands and fat tissue contributing small amounts. The production of estrogen by the ovaries can be permanently stopped by surgically removing them. Ovarian estrogen production can also be stopped temporarily by use of LHRH agonists such as goserelin (brand name: Zoladex), which is a monthly injection.
In the United States, pre-menopausal women with breast cancer are often treated with chemotherapy. Emerging clinical data suggest that ovarian suppression with LHRH agonists is equivalent to CMF chemotherapy in pre-menopausal patients whose breast cancers express ER and PR. Therefore, ovarian suppression with Zoladex may be an acceptable option for the node-negative, pre-menopausal patient with good to average risk who wants a better chance of preserving her fertility, or who for other reasons does not want chemotherapy.
A second setting in which ovarian suppression may be utilized is after chemotherapy, in patients who are receiving tamoxifen. Although it has not been proven that Zoladex plus tamoxifen is better than tamoxifen alone in this setting, there are theoretical advantages as well as existing indirect evidence that this may be so. Of course, the benefit derived by the addition of Zoladex should be weighed against the added toxicities of the treatment. A pre-menopausal woman with a higher risk ER+ breast cancer, perhaps one that is node positive or HER2 positive, who continues to menstruate after chemotherapy and while on tamoxifen, might be a good candidate for combined Zoladex plus tamoxifen therapy.
Ellen Chuang, MD, is assistant attending physician at New York-Presbyterian Hospital and assistant professor of medicine at Weill Cornell Medical College.
Adopton: Challenges and Solutions After Breast Cancer
Some women affected by breast cancer elect to adopt as an alternative means to parenthood. If you and your family decide to do so, you face many decisions. Do you adopt domestically or internationally, through a public agency or a private source? Do you want a newborn, an older child, a child of a different race or ethnic background? How do you balance issues around length of survival and the best interests of the child?
Adoption can be conducted in a variety of ways, and the laws that regulate adoption differ in each state and country involved. An important first step is learning about your options.
Children can be adopted through the public or private adoption systems. In public adoptions, children typically come from foster homes and are under the care and protection of the state. Children enter the system at different ages and for different reasons. Foster children who are eligible for adoption cross a wide range of ages. Adoptive parents are especially needed for children over age six and children with special needs.
Private adoptions can be done domestically or internationally; they offer the best opportunity for those seeking a newborn or child under 18 months old. Domestic adoptions must comply with state law. Depending on your particular state's requirements, you may use private agencies, attorneys or facilitators to identify a child and conduct the process required to complete an adoption. Other resources include physicians, counselors, pastors and organizations specializing in finding newborns, older children or special-needs children.
In domestic adoptions, some sensationalized stories in the news media have resulted in some prospective parents having fears about birth parents who may return to reclaim children after the adoption. Generally, these fears are unfounded. Each state has different laws regarding the voluntary surrender or termination of birth parents' rights. Using competent professional services and following appropriate procedures ensure that the legal rights of birth parents will be addressed in a clear and secure manner. In addition, more recent practices of openness in adoption have reinforced that the voluntary placement of a child for adoption is a fundamentally cooperative process between the birth and adoptive parents. Typically, in domestic infant adoption, babies come home to the adoptive parents upon release from the hospital or shortly thereafter.
International adoptions are regulated by the child's country of origin, and most are legally finalized in those countries. They are growing in popularity because more people want infants and young children than are available domestically. Some international adoptions are done privately by individuals, but most are conducted by agencies and professional services. The federal government will soon begin regulating international adoptions.
Price is another factor. Typically, there are no fees associated with adopting children from the public system. Private domestic adoption costs range from $15,000 to $35,000 and may include agency services, legal fees and travel costs. You also may encounter advertising fees in states that allow families to run ads in print or online to connect with a pregnant woman interested in making an adoption placement for her child. International adoptions range from $10,000 to $30,000. Costs may include legal fees, translations, agency services, document processing fees, the services of foreign facilitators, travel and incidentals and sometimes a donation to an orphanage or other facility that cares for children.
Whichever route you choose, you are entitled to a "statement of fees" that lays out the costs associated with the adoption process. Most likely you will be eligible for an Adoption Tax Credit of up to $10,160.
Knowing the facts is just the beginning. Allison Rosen, PhD, a psychologist and breast cancer survivor, says women affected by breast cancer share common concerns, including fear of discrimination and uncertainty about sharing their cancer history. She wrote about these issues in "Third Party Reproduction and Adoption in Cancer Patients," a study she recently presented at the Parenthood After Cancer Conference, held at the MD Anderson Cancer Center.
"Most regulatory structures in adoption are very broad," says Peter Gibbs, MA, LMFT, director of the Center for Adoption Research at the University of Massachusetts. "The statutes are general regarding the prospective parents, including evaluations of their fitness and ability to provide care and a stable, nurturing environment for the child. The determination of who can adopt is based on the decision of the professionals who conduct the home study process."
In the home study, a social worker meets with the prospective adoptive parents and makes a home visit over a period of time to ensure you have the basic capabilities to meet the needs of a child. Home study workers also explain the adoption process, answer your questions, discuss the realities of the experience and review your personal and health history. Home studies are required in all adoptions.
Many people do not realize they can choose their home study worker, Rosen says. Because home studies have no set rules, she advises families to pre-interview workers and gage their attitudes toward cancer before moving forward. "Once you start the process, it's harder to shift agencies and social workers," she says.
To prepare for these interviews, Gibbs suggests your family discuss some of the difficult issues you may face as a parent and cancer survivor. Among them are:
—Your motivation for adopting
—How you would handle parenting and
—communication with your child should you be rediagnosed
—How your partner would handle raising your child alone
Make specific plans for various contingencies. Once you make them, think them through again and explore their effect on a child. If you became very ill, how would you manage?
"People who have had cancer are in a position to consider those things, whereas those who haven't can't even imagine it," Gibbs says. "But all parents have an obligation to think about these possibilities. On the positive side, someone who has considered all of these significant, powerful possibilities may be very well prepared to parent."
Another area of concern is the requirement that prospective parents submit health information, usually in the form of a doctor's letter. This letter is a critical piece of the information-gathering process, and its language should be carefully articulated. No set standards exist, but the letter may describe your diagnosis and treatment, current medical status, and issues of future medical risk and length of survival. It can aid in an open discussion of the implications of a possible loss and the challenges in attachment for the child.
The letter also provides an opportunity to educate your home study worker, who will explore your current health status, prognosis and issues related to your experience with cancer, Gibbs says. You may need to get information from medical specialists to help them understand the implications of your history with cancer.
"Breast cancer is a complicated illness—it's not one illness—and not all adoption professionals will understand this," Gibbs says. "They will need the help of qualified medical professionals to understand the issues."
In a domestic or private adoption the doctor''s letter may impact the decision of the birth parents regarding a prospective parent with cancer. And legally, no single diagnosis is exclusionary. Says Gibbs: "There isn't a one-size-fits-all here. People's circumstances should be evaluated on an individual basis."
However, foreign authorities or agencies that conduct international adoptions may have more rigid and exclusionary standards regarding the health status of prospective adoptive parents. International children usually have been living in orphanages where attachments to caregivers and other children may make them more vulnerable to loss than other children. This phenomenon, known as "attachment disorder," is more common in children adopted internationally, Rosen says.
In Rosen's study of six adoption agencies, she found agencies differed in their openness toward cancer survivors. Between .5 and 10 percent of the agencies' clients were cancer survivors. "No agency wanted to discriminate, but they view their primary client as the adopted child and are protective of the countries they work with," she says.
Perseverance is important, says Gibbs. For the three women profiled in this article, perseverance helped them adopt after breast cancer.
For Janet*, 40, one of the biggest challenges of the adoption process was finding a reliable resource for information. "Selecting the right agency for a foreign adoption and obtaining word-of-mouth recommendations from other adoptive parents—from someone else with breast cancer—helped us find the solution," Janet says. "You have to place your complete trust in the agency and all the people you work with along the way. It''s blind faith."
Diagnosed with breast cancer at age 33, Janet had a two-year-old daughter and plans for another child. Her treatment comprised a lumpectomy, chemotherapy and radiation therapy. Because her tumor was estrogen-receptor positive, she went on tamoxifen.
"I began to feel cautious about getting pregnant again and began to consider adoption," says Janet. So at age 36 she consulted an adoption counselor recommended by her radiation oncologist. "I was afraid of misinformation and aware that adoption is time consuming. Our counselor described the process, walked us through domestic and foreign situations, and explained that relinquishment of parental rights was different in different states."
Janet and her husband had no initial preference for domestic versus foreign adoption. "The focus of our concern was our daughter, who was four at the time, and how her life was about to change," Janet says. "If an adoption did not come to fruition and we had to start over again, what would be the impact on our daughter? She was an integral part of the process. Foreign adoption seemed to alleviate some of the uncertainty, and that''s how we decided."
Leela, 33, recently adopted two children from Russia. Diagnosed two years ago with stage II breast cancer with lymph node involvement, she underwent a bilateral mastectomy, chemotherapy and radiation therapy. "I did a tremendous amount of research into the adoption process throughout the nine months of my treatment," says Leela. "I wrote to and interviewed different social workers and located an agency I felt comfortable with. It helped me focus on the future."
At the time, Leela and her husband had a 12-year-old daughter and wanted a larger family. "Knowing we didn't want a newborn made the option of foreign adoption our first choice," says Leela. "The hardest thing about adopting from Russia is finding an agency that isn't closed off from considering a woman with breast cancer. The social worker's personal opinions about cancer do come into play. It''s her interpretation of the home study results that reflect your current and future health to the agency. The agency we finally settled on barely mentioned my medical condition in the home study."
Maria, 36, adopted her first son domestically six years ago. Through a facilitator, she is finalizing the private adoption of her youngest son, now one year old, who has lived with her family since birth. Initially diagnosed at age 24, Maria had a lumpectomy, chemotherapy and radiation therapy. Four years later her cancer recurred, and she received a bone marrow transplant.
"My husband and I chose to adopt domestically for three reasons," says Maria. "We thought it would be easier to understand the adoption process here rather than abroad, where we''d have to deal with language and other barriers. We wanted to adopt a Caucasian infant. And I had a friend who'd successfully adopted domestically and could guide me through the process."
The family had adopted their oldest son privately through an attorney. "A birth mother would contact the attorney, informing him she had decided to put her child up for adoption, and he would present her with four or five sets of prospective parents," Maria explains. "After much work and time a match was finally made between a birth mother and us. The second time around we chose to use an adoption facilitator through a website. The site lists information about various birth mothers, such as due date, health status and medical and agency fees. Prospective parents e-mail the site when they locate a birth mother that interests them, requesting the birth mother''s profile. Either way, the whole process is time consuming and requires a lot of paperwork, follow-up and patience."
Although the process took two years, Maria says the experience was wonderful and she would do it again. "We were prepared for the home visit and felt nothing was unanswerable or undoable. The social worker delved through our backgrounds and asked questions about our own childhoods, our discipline styles and our likes and dislikes. She wanted to know who we were and that we''d have a safe place to keep a baby. My husband and I each had to present doctor''s letters stating we were in good health."
"Both cancer and the adoption process are intrude on our most intimate space," says Gibbs. "We have to tell our personal stories and give information we don't typically have to share. There's also a certain element of fear of exposure to the judgment of others."
"We were completely up front about my health history," says Janet. "Both of us felt my breast cancer diagnosis is just one part of who I am and don't view it as a detriment. I believe all the information and facts from both sides should be on the table, for everyone involved to be able to make an informed decision—and a decision in the best interests of the child.
"Now that we have Miranda [from China], we can't imagine our lives without her. It's a privilege to bring another culture into our family. My message to someone else with breast cancer is [that] if you want to adopt, there is no reason why it can't happen."
Leela was direct in asking the various social workers she interviewed how to address questions of medical risk and life expectancy. She got letters from her oncologist, primary care physician, radiation oncologist and cancer counselor. Each letter described her treatments and did not directly provide a prognosis.
For the home study Maria and her husband had to provide proof of financial stability, present life insurance policies and undergo child abuse and criminal history record checks. "We also had to have physicals and demonstrate normal life expectancy," Maria says. "My medical history disclosed my 1991 diagnosis and follow-up treatment."
"My philosophy during the process was, ‘if asked, tell the whole truth,'" says Leela. "I didn't want to distort the facts and end up with heartache and lost time and effort. I recommend presenting all the facts. However, after five years [of disease-free survival], I might never bring it up. For the home study I was ultra prepared to overcome the social worker''s misconceptions around breast cancer."
"To other women with breast cancer who decide to adopt, I say don't give up," Leela says. "If you get a ‘no'' at one door, go to the next. Open the phone book and get on the Internet. Someone will work with you. Interview the social workers, be selective and don''t be frightened by rejection. Ask them how they conduct the home study and how they feel about your prognosis. Ask about the agency's policies and whether you have to mention your cancer history if you are adopting within the first five years of diagnosis and treatment. Focus on your current health."
Maria advises: "Both cancer and adoption are like riding a rollercoaster. Each is an emotional ride, and the hardest part is the waiting. Neither is easy, but I am a witness that success can happen."
- Not her real name. LBBC withheld the women's names upon their request.
Select Resources
- A listserve and resource for people interested in adopting after cancer:
http://groups.yahoo.com/group/adoption-after-cancer
- About state adoption laws:
National Adoption Information Clearinghouse: naic.acf.hhs.gov
Center for Adoption Research: www.centerforadoptionresearch.org
- Nonprofit groups
FertileHOPE: www.fertileHOPE.org
Living Beyond Breast Cancer: www.lbbc.org
Resolve: www.resolve.org
Young Survival Coalition: www.youngsurvival.org
- About the adoption tax credit:
Internal Revenue Service: www.irs.gov/taxtopics/tc607.html
Carmen Febo-San Miguel, MD: A Busy Doctor Manages Breast Cancer While Giving Back
"Think with your body and dance with your mind."
This minimalist poem by Victor Hernandez Cruz, a Puerto Rican poet, has become a guiding principal in the life of Carmen Febo-San Miguel, MD, a physician, community activist and woman living well with advanced breast cancer.
Born and raised in Puerto Rico, Dr. Febo-San Miguel studied medicine at the University of Puerto Rico and completed her residency in family medicine at Hahnemann Medical College and Hospital in Philadelphia, where she has lived since then.
Dr. Febo-San Miguel was first diagnosed with breast cancer in 1993 at age 45. She underwent a mastectomy, six weeks of radiation therapy and six months of chemotherapy. It was a difficult period. But by the time she completed treatment, doctors could not detect cancer in her body.
Dr. Febo-San Miguel practiced medicine full-time until 1999, when she became disillusioned with state of medicine. Her fierce devotion to the defense and promotion of Latino culture led her to become executive director of Taller Puertorriqueno, Inc., a Philadelphia-based cultural and educational center with safe facilities, creative outlets for youth and programs on Puerto Rican and Latino heritage. She began practicing medicine part-time at Maria de los Santos Health Center, a healthcare facility in North Philadelphia that primarily serves Latinos. And she continued her work in community service, assisting the Mayor’s Commission on Puerto Rican/Latino Affairs, Congresso de Latinos Unidos and many other groups.
The woman known by close friends as "La Febo" kept a very busy schedule. But in September 2001, Dr. Febo San-Miguel learned her breast cancer had recurred and spread to her liver, ovaries and abdominal cavity. The diagnosis came as a shock.
"It was an incredible realization of how fragile and vulnerable we are in this world," Dr. Febo-San Miguel says. "As a physician, I immediately knew the implications of advanced breast cancer. And yet, in the first few days, all of the information was not available. Is it in my bones? In my brain? All have such different implications."
Once she knew the extent of the cancer, Dr. Febo San-Miguel plunged into her treatment. "There are no simple answers. Different cancers and different people respond differently to treatment. I’m lucky that there were many more treatment options then there were 10 years ago, and lucky that my cancer did respond."
Dr. Febo San-Miguel’s treatment consisted of 17 chemotherapy sessions. Although she received different chemotherapy medications for her second diagnosis, she says many of the side effects were the same as the first time, including nausea, fatigue and loss of appetite.
"I would have chemo on Fridays, get through it over the weekend, and try to return to work by Tuesday. I maintained a life as close to normal as possible. I had to deal with the pain, the hair loss, but I tried to not stop doing what I was doing. I ate healthier and worked on things to contribute to my well-being. But I didn’t change my work, or the ways in which I have fun."
She completed her last treatment November 2002. Dr. Febo-San Miguel says she had no major complications but still experiences neuropathy (numbness) in her hands and feet. She has follow-up appointments every few months, CT scans every six months and takes regular blood tests. A recent CT scan showed no evidence of cancer. What helps her get through most, she says, is concentrating on her chances for a good quality of life.
"Keeping myself focused on the things that are important to me in my life kept me focused on getting better," she says.
"I’m not naive enough to think that I’m done. I know the chances of recurrence are very high. But every year, there are greater advances in treatment, and there will be more weapons in the arsenal to wage the war. Women with breast cancer need to think of it as a chronic condition. One treatment may not be enough."
A diagnosis of advanced breast cancer really confronts you with your own mortality, Dr. Febo-San Miguel says. "If anything, it infused me with more desire to continue to do the things I’m committed to: the work I do in my community, the assistance I provide to my patients, the enjoyment of my life and family and friends. Everything becomes more precious."
One way Dr. Febo-San Miguel increased her commitment to the Latino community was by sharing her insights and experience with LBBC. She serves on the professional advisory committee for Celebramos el Mañana: Latinas que Sobreviven el Cancer del Seno/We Celebrate Tomorrow: Latinas Living Beyond Breast Cancer.
Statistically, Latinas have lower rates of breast cancer than Caucasian or African-American women. But while research indicates the gap in screening between white and African-American women may be closing, Latina women still lag behind. Fewer than 50 percent of Latina women over age 40 have regular mammograms. Barriers to access range from personal fears and language barriers to larger systemic problems such as physician-patient relationships, communication and lack of access to insurance.
To continue her work breaking down those barriers, Dr. Febo-San Miguel takes a positive approach to her diagnosis: "My attitude has always been that life’s not made of only good things; it’s a mixture of good and bad. You have to take it all, confront your problems, take them on with all their implications, and move forward."
She cites an ancient Puerto Rican expression. "Puerto Rico is one of the larger Antilles islands in the Caribbean. In the old days, people survived with items that came by ship from Spain. The boats bringing the supplies didn’t always make it. Perhaps the boat bringing sugar didn’t come. The next boat might not be carrying sugar, but something different. And the people would make the best of it. The saying goes, ‘Eso fue lo que trajo el barco.’ It means, ‘That’s what the boat brought.’ You make the best of what you get."
