There are more than 400,000 female cancer survivors below age 40 in the United States today, due primarily to the relatively large number of young women who are diagnosed with, and beat, breast cancer. Approximately 70% of breast cancers are identified as estrogen receptor-positive (ER-positive), meaning they express estrogen receptors and grow when exposed to the hormone estrogen. Tamoxifen, an estrogen receptor antagonist (meaning it prevents activation) is used to reduce cancer recurrence and mortality in premenopausal women with ER-positive cancers. Current general practice encourages women to take Tamoxifen for at least 5 years after an initial cancer diagnosis to reduce the risk for relapse but a recent study indicates that longer Tamoxifen treatment may be even better.

The recent study published in The Lancet examined the relapse and mortality rates of women who took Tamoxifen for 10 years after initial cancer diagnosis, rather than the established 5. The authors identified that 15 years after diagnosis, cancer recurrence rates were 3.03% in the 5-year tamoxifen-treated women, compared to 2.54% in the 10-year treated women. Similarly, death in these survivors occurred in 2.29% of the 5-year treated women versus 1.64% in the women who were on tamoxifen for 10 years. These results indicate that some women may want to extend tamoxifen therapy to get maximal benefit from the drug.

It is important to note that, in the study, the majority of benefit from tamoxifen did occur in the first five years of treatment so some women may still choose to take the drug for 5 years. Multiple factors, including side effects that negatively impact quality of life, may cause women to choose the shorter treatment schedule. These include endometrial cancer, venous thromboembolic events, cataracts, hot flashes, and other symptoms associated with menopause. Currently, up to 50% of patients discontinue tamoxifen prior to reaching the 5-year mark and women under age 40 are at highest risk to discontinue therapy.

In addition to side effects, considerations about fertility may affect tamoxifen adherence rates in younger women. Tamoxifen is a teratogen, meaning it can cause prenatal malformations. Thus, young cancer survivors who are interested in pregnancy may be hesitant to take the extra years of tamoxifen examined in the study. For example, a 30 year-old woman diagnosed with cancer may be able to wait until age 35 to have children but not able to wait until age 40, when her reproductive chances have declined significantly. Given the new study and individual considerations for young women, each ER-positive breast cancer survivor should discuss the pros and cons of extending tamoxifen therapy in her specific case, with her doctor. If you have a question about your reproductive options after a cancer diagnosis, contact the Oncofertility Consortium‘s FERTline at 866-708-FERT (3378).

Finding out your pregnant can be one of the happiest times in your life. Couple that with a cancer diagnosis and suddenly you’re not only concerned about your health, but that of the new life you are busy growing. Cancer during pregnancy is rare, occurring in approximately one out of every 1,000 pregnancies, and breast cancer is the most common cancer diagnosed during pregnancy. Currently, little research is available to guide women and doctors during this uncertain time.

When making treatment decisions for cancer during pregnancy, the doctor considers the best treatment options for the mother and the possible risks to the baby. The type of treatment given depends on many factors including, gestational age of the baby; the type, location, size, and stage of the cancer; and the decisions of the expectant mother and family. Some cancer treatments can harm the fetus, especially during the first trimester; therefore, treatment may be delayed until the second or third trimesters. When cancer is diagnosed later in pregnancy, doctors may wait to start treatment until after the baby is born, or they may consider inducing labor early.

Unfortunately, the current medical literature cannot answer all the relevant questions for a woman facing a cancer diagnosis during pregnancy. Few oncologists or obstetricians treat more than 2 or 3 patients in this situation in an entire career. The only way to gain the necessary knowledge about cancer found and treated during pregnancy is to gather together experience from various hospitals into one single database. To the benefit of oncofertility, Dr. Elyce Cardonick, a Maternal Fetal Medicine Physician at Cooper University Health Care in New Jersey, is doing just that.

Dr. Cardonick has created a health registry, which collects information about the diagnosis, and treatment of cancer in pregnant women. According to Dr. Cardonick, the information collected is strictly confidential and will help study the effects of a newly diagnosed cancer and its treatment on a concurrent pregnancy. Additionally, the interaction of a pregnancy on the natural history of certain types of cancer will also be studied. Some women have even received chemotherapy during pregnancy and delivered healthy infants. Dr. Cardonick is also interested in including pregnant women with a history of cancer in a separate database. In both studies, the health of the women and their children are followed yearly in cooperation with the patient’s oncologist, pediatrician and obstetrician.

For more information about the pregnancy and cancer registry or to become a participant, please call (877) 635-4499 or visit www.cancerandpregnancy.com. To learn more about the role of OB/GYN in comprehensive cancer care, please read this previous blog.

The more we understand about our genes, the more we understand genetic diseases and eventually, how to best treat them.  The recent efforts of a nationwide consortium of researchers suggests that the origins of the type of breast cancer a patient is diagnosed with may inform the most effective course of treatment.

The study, published in Nature on September 23^rd, is one of the most comprehensive studies of breast cancer to date.  The study revealed that the gene expression profile for one of the most aggressive forms of breast cancer, basal-like carcinoma, is more similar with ovarian tumors than with other breast cancer subtypes.

The four main breast cancer subtypes: Luminal A, Luminal B, HER2, and basal-like, were confirmed and characterized by leading researchers at several institutions as part of The Cancer Genome Atlas Network.  The study is part of an NIH funded initiative with the Cancer Genome Atlas Network to build maps of genetic changes in common cancers.  While most historical studies of breast cancer have utilized one or two methods to analyze and characterize the gene profiles of breast cancers, six parallel technologies were used for this study to examine mutations and defects in DNA, RNA, and proteins.  Consortium scientists analyzed tumors from 507 women, with nearly 350 tumors being analyzed using all six technologies.

Basal-like breast tumors are also known as “triple negative” tumors.  Triple-negative tumors lack receptors for the hormones estrogen, progesterone, and human epidermal growth factor 2 (HER2), which are the gene targets of a number of approved chemotherapies such as Tamoxifen and Herceptin.  However, no receptor hormones means no drug targets.  Basal-like tumors are a considered high-grade, indicative of an abnormal appearance of the cells under a microscope and a tendency to grow and multiply more rapidly. These tumors have a poor prognosis for treatment and are more prevalent in younger women, women with BRCA1 and BRCA2 mutations, and women of African-American descent.

Currently, basal-like breast tumors are treated like most other breast cancers, using similar chemotherapy strategies.  However, basal-like breast tumors are aggressive and not been shown to respond well to therapies targeting hormone receptors or to standard chemotherapy regimens.  Consortium researchers found that each subtype could be identified by unique genetic markers, and that mutations in only three genes, TP53 (tumor suppressor gene 53), PIK3CA and GATA3, occurred in common with all four subtypes.  These findings suggest that not all breast tumors are alike and therefore, may not respond similarly to the same chemotherapy regimens.

Consortium scientists found that basal-like and HER2 tumor subtypes were characterized by the highest mutation rates.  Basal-like tumors shared common features with ovarian tumors and lung cancers, including high rates of TP53 mutations, BRCA1 inactivation, and a loss of RB1 and cyclin E genes, which are known to promote genome instability.  The study shows that 80% of basal-like tumors had TP53 mutations and approximately 20% also have mutations in the BRCA1 or BRCA2 genes. Mutations in the TP53 gene have been strongly linked to poor treatment outcomes, while BRCA1/2 mutations are known to increase breast and ovarian cancer.

A growing body of research suggests that tumors should be characterized and treated based on the presence of abnormal genes and abnormal gene expression profiles rather than on their location in the body.  Consistent with these findings, consortium researchers found that basal-like tumors are genetically more similar to ovarian tumors based on their genetic profiles.  Ovarian tumors are also characterized by a high frequency of TP53 mutations, widespread genomic instability and share other gene mutations in common with similar frequency.   These results give biologic reasoning to consider the potential benefits to patients with basal-like tumors to be treated with platinum-based chemotherapies currently approved for the treatment of ovarian cancer or PARP inhibitors which target tumors with BRCA1 and 2 defects.

Clinical trials are a lengthy but necessary step to determine if platinum-based compounds, currently used to treat cancers elsewhere in the body, and/or PARP inhibitors hold promise for patients diagnosed with basal-like breast carcinoma.  For now, this study offers much needed insight into the origins of the most aggressive form of breast tumor and promising possibilities for future personalized treatments.

Infertility has been associated with psychological distress and can have a negative impact on quality of life in cancer survivors.  Reproductive concerns are often sited among young cancer survivors prior to, and following cancer treatment. A number of fertility preservation (FP) options are available to preserve patients’ future reproductive ability. For men, sperm banking is a clinically established method, and a relatively straightforward procedure in comparison to FP for women, which is more complex. In a new article published in the Journal of Clinical Oncology by authors Gabriela M. Armuand, Kenny A. Rodriguez-Wallberg, Lena Wettergren, Johan Ahlgren, Gunilla Enblad, Martin Ho ̈glund, and Claudia Lampic, entitled, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors,” the authors investigate male and female cancer survivors’ perception of fertility-related information and use of FP in connection with cancer treatment during reproductive age.

The authors used a sample of 484 survivors diagnosed from 2003 to 2007 identified in population-based registry in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at the time of diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Study participants were asked to fill out a questionnaire assessing their experience with FP and knowledge of FP techniques following a cancer diagnosis.

The majority of male participants reported having received information about treatment impact on fertility (80%) and more than half of the men banked frozen sperm (54%). Among women, less than half reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women, or 2%, underwent FP.  Sex was the single most important predictor for receipt of information about FP; a man was 14 times more likely to report having received such information than a woman. The results of this study are even more interesting when you take into account that in Sweden, infertility treatment is part of the tax-funded health care system; therefore, FP is available to all patients with cancer. Nonetheless, this did not seem to have an impact on female access to FP information and services.

The results of this study suggest significant sex differences when conveying fertility-related information and the use of FP. As a result, the authors argue that there is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decision-making regarding their treatment and future reproductive options. In an effort to meet the needs of young female cancer patients, the Oncofertility Consortium developed educational materials to help young women and their families better understand their fertility preservation options. Read, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors.”

Infertility is serious and often underestimated side effect of cancer treatment. Ensuring cancer patients are equipped with the necessary health information to protect and preserve their fertility in a time sensitive manner is a critical component to comprehensive cancer care. In a new article in Nursing: Research and Reviews, by Angela Jukkala, Karen Meneses, Andres Azuero, June Cho and Patrick McNees, entitled, “Development of the Knowledge of Fertility and Fertility Preservation Scale,” the authors reported on a process used to develop and examine the reliability and validity of an instrument to measure a breast cancer survivor’s self-assessed knowledge of fertility and fertility preservation.

In their study, 92 breast cancer survivors between the ages of 25-45 were asked to complete the Knowledge of Fertility and Fertility Preservation (KF) Scale as part of their participation in a larger study, the Fertility Cancer Project (FCP). The KF Scale is a new instrument designed to measure a breast cancer survivor’s self-assessed level of knowledge of fertility and fertility preservation. The content of the KF Scale was developed through a comprehensive review of the literature, researcher clinical expertise, and expert review to meet the fertility and fertility preservation knowledge needs of young breast cancer survivors. The KF Scale included 13 content areas grouped into three subscales: Treatment Factors Affecting Fertility, Infertility Information, and Alternative Parenting Options.  All items were scored on a 1–3 rating scale with 1 representing “a little”, 2 representing “some”, and 3 representing “a lot” of knowledge.

The results of the KF Scale analysis were consistent: many participants self-assessed their overall knowledge of fertility and fertility preservation as “a little” and the majority rated their knowledge for the Infertility Information subscale as “a little.” What this means is that most patients completed their chemotherapy treatment having only “a little” knowledge of cancer treatment’s impact on their fertility and only “a little” knowledge about fertility preservation options beforehand. These results suggest that more health-related communication and information about fertility impacting cancer treatment is needed prior to undergoing treatment. According to the authors, “Health care professionals providing care for young women newly diagnosed with breast cancer must be able to provide needed health information on a wide range of topics (eg, surgery, chemotherapy, fertility preservation) in a relatively short period of time.”

To ensure that patients receive quality nursing care, they need to be informed of the long-term side effects of chemotherapy, including infertility. The KF Scale could be used to develop individualized teaching plans to meet patient-specific fertility and fertility preservation health information needs. The KF Scale could also be used to examine the effectiveness of educational interventions if used before and after the intervention. Read “Development of the Knowledge of Fertility and Fertility Preservation Scale.”

As previous studies have shown, women diagnosed with cancer during their reproductive years often do not receive adequate consultation, and sometimes none at all, regarding the fertility risks of cancer or its treatment.  Fertility is a unique survivorship issue that young cancer patients face, which can impact their quality-of-life after cancer treatment.  In the African American (AA) community, although more AA women are diagnosed with early-onset breast cancer than Caucasian women, little is known about patient awareness related to fertility or the rate at which providers are communicating potential fertility issues.

A new article in Supportive Care in Cancer by Oncofertility researchers, Susan T. Vadaparampil, Juliette Christie, Gwendolyn P. Quinn, Patrice Fleming, Caitlin Stowe, Bethanne Bower and Tuya Pal, entitled,  ”A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” examines patient/provider communication in the African American breast cancer population.  The authors studied AA women under the age of 50, diagnosed with invasive breast cancer between 2005 and 2006 in an effort to better understand the fertility communication and awareness barriers that may be in place for AA women being treated for breast cancer.

Similar to other studies, the authors found that a substantial proportion of young AA breast cancer patients were unaware of the impact breast cancer treatment would have on their fertility.  One half of young AA women diagnosed with breast cancer reported no discussion with their providers of fertility risks associated with their treatment.  The exception -women who were younger, had no children or few children, and had not undergone tubal ligation were more often aware of the fertility risks posed by their treatment.

The results of this study suggest that better communication and awareness about fertility is critical in order for AA patients to make informed decisions about their treatment.  In line with prior research, definite plans for childbearing, relationship status or sexual orientation should not play a role in whether or not someone is informed about their fertility risks. To learn more about this study or to read, “A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” please click here.

Breast cancer is the number one cancer women are diagnosed with; however, the survival rate for young women diagnosed with cancer in its early stages has improved considerably over the last 20 years.  Today, many young women diagnosed with breast cancer can expect long-term survival, but premature menopause, infertility and psychosocial effects such as depression and anxiety may affect their quality of life. In a new article, Quality of Life, Fertility Concerns, and Behavioral Health Outcomes in Younger Breast Cancer Survivors: A Systematic Review, authors Jessica Howard-Anderson, Patricia A. Ganz, Julienne E. Bower and Annette L. Stanton, examine three key components of functioning that appear to be significant to young breast cancer survivors: quality of life (QOL) health issues, menopause and infertility, and behavioral health outcomes.

The authors conducted a literature review using 26 articles found in PubMed, specifically focusing on women under the age of 51, to determine QOL health issues with breast cancer survivors.  What they found was that young women’s QOL was compromised mentally and emotionally due to loss of fertility, weight gain, premature menopause, sexual function disorders and transition issues. Young breast cancer survivors reported a higher incidence of depression and anxiety than older breast cancer survivors, as a result of this QOL issues.

The authors go on to argue that the QOL health outcomes facing young breast cancer patients may be avoided if the cancer is treated not only based on the type of cancer, but by the age of the patient. They state that young breast cancer patients have different needs and therefore may warrant a different treatment regime.  “By tailoring adjuvant therapy regimes and giving cytotoxic therapy only to those who may benefit, we can mitigate some of these side effects, but the long life expectancy for these young women also provides a window of opportunity for cancer prevention and health promotion activities.”

Overall, what is needed for young breast cancer patients is an established measure for how to treat this demographic that takes into consideration their long life expectancy, including fertility and menopause awareness, as well as behavioral health outcomes.  More studies need to be conducted which evaluate patients pre and post cancer treatment to properly access their QOL before and after they were treated for cancer and potentially suffer any long-term side effects from their treatment. The Oncofertility Consortium provides information and guidance to oncologists, endocrinologists, and other health care providers concerned with expanding the reproductive options of cancer patients and survivors. To read Quality of Life, Fertility Concerns, and Behavioral Health Outcomes in Younger Breast Cancer Survivors: A Systematic Review, please click here.

As we have covered in past blogs,  young people account for about 10% of all cancer patients.  As science, research and advocacy evolve, more young people are SURVIVING cancer and going on to lead healthy and productive lives. Nonetheless, young cancer survivors are in a league of their own when it comes to survivorship issues, (i.e., late-term effects of cancer treatment, fertility, heart & brain health, etc…). In an effort to address and celebrate breast cancer survivorship, particularly in women diagnosed at a young age, a new quarterly magazine was born: Survivors: A Magazine for Inspiration, Hope, Healing and More.

In November 2011, the premier issue of Survivors: A Magazine for inspiration, Hope, Healing and More was published. According to the editors, the goal of the magazine is to “highlight positive and inspiring breast cancer survivor stories – about people who have turned their diagnosis and situation into possibilities and opportunities.” The most significant aspect of this new magazine lies not only in its mission, but also in its content – the magazine spotlights grass roots programs and organizations allowing them to get the kind of exposure they often deserve and need, but don’t often get.

Throughout the first issue are stories from women, many still in their reproductive years, who are involved with the Breast Cancer Awareness Body Painting Project (BCAPP). BCAPP is a form of art therapy for breast cancer survivor showcasing women of all different races and ethnicities with their chests/torso painted, aiming to demonstrate the beauty and inspiration in survivorship by presenting a positive body image of breast cancer survivors. If you have not already, you should definitely take a look at these profound and brave images of women who have been diagnosed with and survived, breast cancer.  If you need a little inspiration, you will be hard pressed not to find it here.

Their first issue of Survivors: A Magazine for Inspiration, Hope, Healing and More can be downloaded for free so take a look at it here and if you love it, they’ve already released their second issue for purchase.  If you’re interested in contributing breast cancer survivor stories or other related content, please send them an email at: survivors@inkspotdesigns.com.

Every month there is some sort of health observance serving as a reminder to people that care should be taken with our bodies, our health and our well-being. We’ve only got one shot at this so we better make the most of it, right?!  This month, February, is National Cancer Prevention Month.  Nearly 1/3 of all cancers are preventable so as you can imagine, there’s a lot you can do to protect yourself simply by making a few lifestyle changes. Here are a few things you can do to reduce your risk for cancer:

Get screened regularly and know your health history: Regular screenings play a big role in cancer detection and prevention and knowing your family’s health history is important for lowering your risk for certain cancers.  For example, if your family has a history of breast and/or ovarian cancer, make sure that you are going in for regular visits with your gynecologist and ask about genetic testing to determine your risks. Share you history with him/her so that they can have a better understanding of your individual healthcare needs.

Eat Right and Exercise: Enough information is out there about this that it almost seems redundant to even mention it, but still I must. Eat your broccoli. Talk a brisk walk 3-4 times a week. Pick up a 5-pound weight or do some yoga. Not only will you be lowering your risk for cancer, but you’ll also be reducing your risk for a plethora of other diseases and health problems.

Don’t Smoke and Drink in Moderation: Smoking accounts for 30% of all cancer deaths so why light up? Your lungs are doing a good job for you so why not return the favor? Enough said. As for alcohol, we’ve all heard about the benefits of a glass of red wine, but that’s the occasional glass, not the whole bottle at every sitting. The antioxidant found in red wine that’s believed to provide health benefits, Resveratrol (a compound found largely in the skin of red grapes), can just as easily be found in grape juice so use good judgment and your body will thank you for it.

Limit Your Exposure to the Sun and Always Wear Sunscreen:  Skin cancer is the most common form of cancer diagnosed in the US. Not only does too much sun exposure significantly increase your risk for skin cancer, but that tan will eventually fade and leave you with sunspots and leathery skin. Not cute. So slap on some sunscreen and take care of the largest organ in your body – your skin!

I’ve only just touched upon some things you can do to reduce your risk for cancer so do a little research and talk to your doctor for a more comprehensive list. As any cancer survivor will tell you, it’s not a journey you want to go on willingly, so do what you can, when you can to live your best life.

A recent paper by Oncofertility Consortium trainee, Jayeon Kim, MD, indicates that certain women are more likely to undergo fertility preservation prior to cancer treatment than others. The authors, Jayeon Kim, Kutluk Oktay, Clarisa Gracia, Sanghoon Lee, Christopher Morse, and Jennifer E. Mersereau, found that women were more likely to under go embryo or egg banking if they were wealthier, thinner (lower BMI), had less-advanced disease, and did not undergo neoadjuvant treatment prior to surgery.

In the paper, “Which patients pursue fertility preservation treatments? A multicenter analysis of the predictors of fertility preservation in women with breast cancer,” the authors examined demographic and clinical information of women diagnosed with breast cancer at three centers around the United States. While previous studies have asked which factors affect the likelihood that a woman will be referred for a fertility preservation consultation, this one evaluated which women are most likely to undergo fertility preservation treatment after that initial consult.

Of the four factors that positively correlated with undergoing fertility preservation treatment, only one of them is modifiable in the short time after a cancer diagnosis. Neoadjuvant therapy includes chemotherapy, radiation, and hormonal treatments prior to surgery. It is often given to patients with more advanced disease and those with a shorter time period between diagnosis and the onset of treatment, which may prevent time for the hormonal stimulation of the ovaries required for embryo and egg banking. One option for these women may be ovarian tissue cryopreservation, an experimental fertility preservation technique that does not require two weeks of hormonal stimulation.

Of the 185 women in the study published in Fertility and Sterility, more than half of them underwent fertility preservation treatment from 2005 to 2010. In addition to the factors that positively correlated with treatment other factors are equally interesting. The authors found that age, having children previously, and presence of a partner or spouse did not affect fertility preservation treatments. Interestingly, insurance coverage status also did not have an effect, possibly because insurance coverage for fertility preservation is inconsistent.

This significant work can help oncofertility specialists better care for their patients in the future. As one of the mission’s of the Oncofertility Consortium is to train the next generation of experts in cancer and fertility, we are proud of the research that Dr. Kim has performed. Read more about the oncofertility training program.