Brain Tumor Community Rallies Around Website

I recently had a conversation with Jill de Bartok, the program manager for patient services at the National Brain Tumor Society (NBTS), about their ever-growing programs. NBTS funds cutting-edge science and serves as a resource for researchers and medical professionals.  It also provides services for patients, families, and caregivers, including a website to educate this community and help them make informed decisions during their treatment journey.

Brain tumors are abnormal growths of tissue within the brain that may or may not be malignant, or cancerous. Like blood-born cancers, some brain tumors are more prevalent in younger people or children than adults but every brain tumor is unique and, as such, requires individualized treatment plans. In talking with Jill de Bartok, she said that many unique difficulties in brain tumor care comes from the “cognitive changes and changes in parts of the brain from the tumor or treatment.”

These cognitive effects can cause seizures, personality alterations, or result in an inability to work or attend school. In addition, brain tumors can damage parts of the brain that produce hormones important in reproduction, causing infertility. Treatment for brain tumors can include surgery, chemotherapy, and radiation, all of which may also affect the fertility of brain tumor patients.

The NBTS focuses much of its research and patient services on quality of life issues. In early 2010, the NBTS launched to provide patients and caregivers an opportunity to share their stories and learn from each other through discussion forums, profiles, and friendship building. These discussions guide the NBTS staff to provide additional information on their “Headquarters blog. According to de Bartok, the NBTS “aims to improve the quality of life for everyone involved in all phases of the journey,” through the site. The NBTS also holds Family Caregiver Workshops in partnership with treatment centers and organizations, to help family members best care for the unique needs of brain tumor patients, and additional awareness events around the country. A Quality of Life initiative further obtains input from experts to ensure that NBTS programs have the most significant impact on the brain tumor community

Late Effects of Cancer Treatment: Infertility and More

We often discuss the late effects of cancer treatment, those that become evident after therapy ends, on this blog. One reproductive late effect of treatment is premature menopause, which can be caused by chemotherapy or radiation damage to the ovaries. Even women who continue to have normal periods throughout cancer treatment may experience a shortened period of fertility and enter menopause as early as their 20s. But late effects of cancer treatment vary considerably and can include surgical problems, secondary cancers, and cognitive difficulties.

Last week, the cancer community was dismayed to learn that Matthew Zachary, the Founder of I’m Too Young For This! and a 15-year brain cancer survivor suffered a stroke as a result of radiation therapy. The symptoms of the transient ischemic attack (TIA) seem to have been temporary and Zachary will be going through a series of detailed tests this week with his neurologists. Since the radiation in 1996, Zachary has experienced a series of late effects and, fortunately, all of them have been temporary.

The episode raises a serious issue in cancer survivorship that affects all of us. Even when fertility needs are covered (Zachary is the proud father of 9-month-old twins), survivors of pediatric, adolescent, and young adult cancers carry additional side effects of treatment with them for the rest of their lives. As survival rates continue to increase, more research efforts are needed to address quality of life issues for those who’ve beaten cancer. What is the best way to increase research on the late effects of cancer treatment? Increased funding.


I’m Too Young for This! and Imerman Angels will present the inaugural Stupid Cancer Happy Hour for the Chicago cancer community this Thursday at Rockit Bar & Grill (22 West Hubbard St.).

Fertility, Femininity, and Cancer

When I was a teenager and in my 20s, I never thought deeply about having children or becoming a mother. By the time I turned 30, I was very busy with graduate school and work, pushing the idea of children even further back into the recesses of “possibilities” for my future. In fact, the older I got, the more I questioned whether or not I ever wanted children at all…until one day I did. What happens when a woman’s ability to conceive and carry a child is no longer a physical possibility due to cancer or its treatment? What does it mean to create and carry a child and what are the options for those whose bodies are unable to perform this function? Does a cancer diagnoses in women of reproductive age or pre-reproductive potential impact our perception of them as “mother” or “woman” if their fertility becomes affected as a result of their illness?

These questions made me think about my own experience as a woman and a mother and how that has been influenced by my environment and personal experience. As a self-proclaimed feminist and advocate for women’s rights, I was always reticent to link women with motherhood for the very obvious reason that not all women are mothers nor do all women aspire to become mothers.., however now that I am one.., my sense of purpose is very much tied to that identity. The process of having a biological child has been integral to my womanhood and I understand on a much deeper level, the desire to want to protect and preserve one’s fertility so that the option of having a child with my own genetic make-up is a possibility. If I were diagnosed with cancer or another illness threatening my reproductive potential, would that force me to reconsider my social role as a woman? Would I at least want the opportunity to discuss my reproductive options so that infertility would not have to be a defining characteristic of my post-cancer life?

These issues as well as those related to pregnancy, birth and fertility are a part of a larger discussion in the emerging field of oncofertility. As demonstrated above, cancer and infertility are not just defined by medical factors, they are also someone’s personal experience embedded in a larger societal and cultural context. In “Placing the History of Oncofertility,” Sarah Rodriguez, PhD argues that society, culture and personal issues all coincide along with medical factors to influence the field of oncofertility and will continue to shape the field requiring a deeper inspection of oncofertility’s history in an attempt to better understand how it impacts the lives of women. Rodriguez’s chapter can be found in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Fertility Research: Standing on the Shoulders of John Rock

The Oncofertility Consortium at Northwestern University is officially closed today due to a record-breaking blizzard in Chicago. The snow day gave me an opportunity to read a chapter in Malcolm Gladwell’s book What the Dog Saw about John Rock, MD, an American doctor and scientist who was integral to many of the advances fertility medicine has seen in recent generations.

From the 1920’s through the 1960’s, John Rock worked as an obstetrician and gynecologist in Massachusetts. As a clinician, Rock saw many patients and couples dealing with infertility. These cases motivated the Harvard-trained doctor to research possible treatments for infertility, some of which are now used to preserve the fertility of young cancer patients.

In the 1940’s, Rock worked with Miriam Menkin to attempt in vitro fertilization with human eggs, or oocytes. In 1944, they published their work in the journal Science. In those experiments, Menkin and Rock described their efforts to fertilize 138 oocytes with sperm and, in three cases, recorded changes in the oocytes that appeared to be post-fertilization cell division. Since, the team never attempted to implant the presumed embryos in a woman, it is not known if the eggs were actually fertilized and viable. Despite this uncertainty, the work that Rock and other scientists performed in these early years was integral to the birth of Louise Brown, the first child born from in vitro fertilization, in 1978.

John Rock also researched techniques now used to preserve the fertility of male cancer patients. In the 1950′s, he worked to perfect sperm banking, which requires freezing and then thawing a sperm sample without damaging the motility or mobility of the sperm. Again, Rock was ahead of his time and successful sperm cryopreservation methods were not developed until the 1970’s.

Dr. Rock may be most well-known for his true scientific passion, birth control. A devout Catholic, Rock first became involved in the contraceptive movement during the 1930’s when he founded a birth control clinic that taught the rhythm method, a church-sanctioned technique that calculates a woman’s reproductive cycle and limits sex between a couple to the infertile period of the cycle. Rock also collaborated with researchers who developed the first hormonal birth control pill and was convinced that this technique, like the rhythm method, was a natural form of contraception and would also be approved by the Catholic church. Needless to say, that did not happen.

Next Thursday, February 10, the Oncofertility Consortium will host Margaret Marsh, PhD, and Wonda Ronner, MD, as they discuss their research on John Rock in a Virtual Grand Rounds at 10 am CST. Join the discussion here through Adobe Connect .

Ovaries: Organs or gametes?

Female cancer patients interested in preserving their fertility prior to treatment may choose from a variety of options including egg banking, embryo banking, or ovarian tissue cryopreservation. While some fertility preservation techniques, such as egg and embryo baking, require a 2 to 3 week delay in cancer treatment, ovarian removal and cryopreservation allow women to proceed with cancer treatment almost immediately. After the survivor is cancer-free and wants to have a child, pieces of her ovary can be transplanted back into her body to begin releasing eggs that are unaffected by chemotherapy and radiation. Most cases of ovarian tissue transplantation are called autografts since the donor and recipient are the same. In a few rare cases, women have received ovarian tissue from other individuals, usually sisters.

These rare cases raise an interesting question to ethicists at the Oncofertility Consortium; should ovarian transplantation between two women be legally treated like organs or gametes? The US government regulates organs listed under the National Organ Transplantation Act and sale of these organs is prohibited. In contrast, gametes, such as eggs and sperm, are unregulated and legally able to be purchased and sold. While ovaries are definitely organs, they also hold genetic material with the potential to become life. Oncofertility ethicist Lisa Campo-Engelstein, PhD, discusses these issues in a recent publication titled “Gametes or Organs? How Should we Legally Classify Ovaries Used for Transplantation in the USA?

The article, published in the Journal of Medical Ethics, discusses that the intended use of the ovary should play a major part in categorizing the donation. One 30-year-old woman identified in the article lost her fertility after cancer treatment for non-Hodgkins lymphoma. Her sister donated an ovary to her so she could carry and give birth to a child. In contrast, another patient requested autotransplantation of her own ovarian tissue not to have a child but to relieve early onset menopausal symptoms. While these two intended uses of ovarian tissue are quite different, they may play roles in the legal, ethical, and insurance designations of such transplants.

In the article, Dr. Campo-Engelstein suggests that ovarian tissue should be classified as a gamete because, in either case, once ovarian tissue is donated to a recipient, it may be used to produce offspring, even if that was not the original intent. It is important to remember that these cases are quite rare and it is unlikely that ovarian tissue donation will become common. However, the Oncofertility Consortium believes it is necessary to include ethical scholars into the discussion of any emerging technology as their insights can help guide the scientific research.

Pregnant with Cancer

Most of the time, this blog focuses on the effects of cancer and its treatment on fertility. But what happens if you are already pregnant and then diagnosed with cancer? Suddenly you are not only focused on fostering your pregnancy but also saving your life and your growing fetus.

Cancer diagnoses occur in approximately one out of every 1,000 pregnancies and while pregnant women may be diagnosed with any type of cancer, those that occur most during pregnancy are also commonly seen in young adults. These include cervical cancer, Hodgkin’s lymphoma, malignant melanoma, and thyroid cancer. Breast cancer is the most diagnosed cancer during pregnancy and is seen in one out of every 3,000 pregnant women. Though cancer during pregnancy is not uncommon, significant gaps remain in our knowledge of how cancer, and its treatment, can affect the mother, growing fetus, or the fertility of the child in utero.

While pregnant, a woman’s body is constantly changing and these changes can mask cancer symptoms and delay a diagnosis. Possible cancer symptoms such as bloating, headaches, or body aches commonly occur in pregnancy also and may prevent timely diagnosis. Once diagnosed, many treatments may be off-limits to pregnant patients. Patients diagnosed with cancer during pregnancy face complex treatment decisions. During the first trimester of pregnancy, chemotherapeutics are associated with significant risk for fetal malformation. Even after the first three months, cancer therapies may cause problems for the developing fetus. Some types of radiation therapy, such as radioiodine, damage specific tissues but other therapies are thought to be safer. The many types of cancer treatments and variables during pregnancy have prevented the standardization of care for these women.

Little research has examined the long-term effects of cancer treatment on a child exposed to cancer therapies in utero. Significant studies are needed to examine the fertility and long-term health of these offspring. This work would be used to develop guidelines to treat women who are pregnant and facing a cancer diagnosis. In conjunction with research, expert clinicians should be trained to treat pregnant cancer patients. Moreover, cancer during pregnancy presents a unique and complex scenario that must be carefully treated by a multidisciplinary team to to provide a bright future for both mother and child.

Emerging Treatments and Education for Blood Cancers

Ten percent of all cancer cases are classified as blood cancers because they originate in the blood, bone marrow, or lymphatic tissue that frequently spreads to bone marrow. These cancers, which include leukemia, lymphoma, and myeloma, cause uncontrolled division and growth of abnormal blood cells that can crowd out other necessary blood cells. While they can affect people of all ages, lymphomas are the third most common cancers in children.

One of the greatest problems with these cancers is diagnosis. The typical symptoms of blood born cancers are also common in many non-life threatening illnesses and, as such, can delay accurate diagnoses.  These include generalized tiredness, anemia, bone aches, or bruising. Many blood cells are involved in the immune response and may be reduced in patients, who may also experience frequent infections.

The most common treatments for leukemia, lymphoma, and myeloma are chemotherapy and radiation, which have significantly increased survival rates over the last decades. Remission for these cancers is positively correlated with the amount of chemotherapy used, meaning that the greater the chemotherapy dose, the more likely the cancer cells will be destroyed. Unfortunately, increased chemotherapy also increases the risk for future infertility.

Patients at high risk for relapse or those not responding to traditional cancer therapies are candidates for stem cell transplantation. During a stem cell transplant, cancer-free cells are introduced into a patient and become integrated into bone marrow cavities to begin making healthy bone marrow and stem cells. Stem cell transplants can be used with cells from the patient, called an autologous transplant, or from cells from a donor, called an allogenic transplant. Prior to transplantation, patients undergo significant chemotherapy and whole body irradiation to kill off any remaining cancer cells and inhibit the patient’s immune system to prevent rejection of donor cells. The significant amount of chemotherapy and radiation in stem cell transplantation put patients especially at risk for loosing their fertility and such patients should look into fertility preservation options if they are interested in having biological children later in life.

Fortunately, both oncology providers and patients have many opportunities to learn more about emerging research and treatments in blood born diseases. Last Friday, the Physicians’ Education Resources hosted an event at Northwestern University’s Feinberg School of Medicine to inform providers on “Current Trends in Leukemia, Lymphoma, and Myeloma.” Patients and their families can also learn from the experts in a series of free upcoming events for the public including the Leukemia Research Foundation’s Annual Town Hall Meeting on Sunday, January 30, 2011, which will include physician panelists who will discuss how to find a treatment center, the role of genetics in blood cancers, and clinical trials for patients. Gilda’s Club of Chicago is also holding a seminar on February 2, 2011, on Improving Treatments for Blood Cancers.

Premature Menopause: The Unexpected Symptoms of Cancer Treatment

When most younger women think of menopause, they think of their mothers having hot flashes at the dinner table or hearing about sleepless nights from their aunts but women dealing with cancer at many ages may experience these symptoms. Menopause can manifest in a variety of ways including hot flashes, mood swings, changes in sex drive, and memory loss. While the average age of menopause in the United States is 51, cancer treatments can induce premature menopause, either permanently or temporarily, in much younger women. Survivors of childhood cancer are also up to 13 times more likely to experience premature menopause than women without a cancer history.

The menopausal change is an important issue at any time in a woman’s life but women who are simultaneously dealing with a cancer diagnosis and treatment are even less prepared than older women. In ageing women, menopause is caused by a gradual shutting-down of the ovaries at the end of the reproductive years. With “the change,” the ovaries stop producing the hormones estrogen and progesterone. This hormonal withdrawal causes many of the symptoms of menopause. Young women undergoing a variety of cancer treatments may experience a sudden onset of menopause and its symptoms.

Chemotherapies that cause damage to the ovaries (and cause permanent or temporary infertility) can cause menopause. Some chemotherapies, such as those with alkylating agents, are more likely than others to increase the risk of infertility and menopause. In addition, radiation therapy to the pelvic areas or the brain can induce menopause by damaging the ovaries directly or disrupting the parts of the brain that control ovarian function. Women with ovarian cancer and some cases of breast cancer may have their ovaries surgically removed, which pushes them into a premature menopause termed “surgical menopause.” Some chemical methods of cancer prevention, such as tamoxifen, are prescribed to young women to reduce the risk for primary breast cancer or relapse. Tamoxifen works by interfering with estrogen signaling in the body that can increase the proliferation of cancerous cells but can also commonly cause menopausal side effects in women, though it does not cause menopause.

As with older women, symptoms for premature menopause due to cancer therapy may vary greatly between women. Cancer survivors with premature menopause experience a longer percentage of their lives without the natural protective effects of estrogens. These hormones are important for maintaining bone and heart health and cancer survivors may be at increased risks of long-term effects of premature menopause such as osteoporosis and cardiovascular disease. A new documentary, called Hot Flash Havoc, aims to explain some of these risks and includes interviews with women who experienced premature menopause in their 30s. The Institute for Women’s Health Research is hosting an event with a panel of experts and pre-screening of the documentary on Wednesday, February 2nd in Chicago, IL.

New Publication: Oncofertility and Gender Roles

Investigators at the Oncofertility Consortium recently published a discussion on historical perceptions of infertility in the Journal of Cancer Survivorship. The authors, Shauna Gardino, Sarah Rodriguez, PhD, and Lisa Campo-Engelstein, PhD, related this evidence to contemporary responses to real or perceived fertility loss by male and female cancer survivors. Since oncofertility is a new field, studying infertility and gender allows researchers to gain an understanding of the desire for fertility preservation in male and female cancer patients.

In “Infertility, Cancer, and Changing Gender Norms,” the authors identify that men and women may differently value their reproductive potentials and delve into historical views of infertility between genders. Infertility has often been considered a female problem-though both genders are equally likely to experience infertility. With the advent of modern-day medicine, infertility became a treatable condition for both men and women but, until recent times, almost all patients seeking infertility treatments were women.  The authors further explore the psychological reactions that men and women experience when receiving a diagnosis of infertility and how that has changed over time.

Recent studies have examined the value cancer survivors place on their fertility and it they are distressed by its potential loss. Interestingly, early research identified such values primarily in women but current literature increasingly finds fertility concerns in men, indicating that gender differences in infertility concerns may be decreasing. Perceptions of fertility, infertility, and parenthood have changed rapidly over the past few decades. In the United States, men are more active in child rearing than a generation ago and the authors stipulate that this may play a role on the changing values that men and women place on having biological children.

The National Institutes of Health, which funds the research of the Oncofertility Consortium, supports investigating the changing perception of fertility by cancer survivors, as it can guide fertility preservation recommendations to patients. This new information can help health care providers better care for cancer patients as they make fertility preservation decisions in the short time between diagnosis and treatment.

To learn more information about the history of fertility, join us online at the February 10th Oncofertility Consortium Virtual Grand Rounds with Margaret Marsh, PhD, and Wanda Ronner, MD, who will discuss “The Fertility Doctor: John Rock and the Reproductive Revolution.”

ASCO University for Cancer Providers

The American Society for Clinical Oncology provides continuing education for medical professionals on a range of topics. One recently-launched module, Focus Under Forty, disseminates information to help providers best care for patients between 15 and 39 years old. The free presentations identify the unique challenges that young cancer patients and survivors face in the realm of supportive and cancer care.

The seminars identify medical risks that cancer disease or its treatment may cause for young patients. Some issues, such as osteoporosis and blood clots, may affect adolescents and young adults more than children. Other problems identified in the module are caused by specific cancer therapies, such as anthracycline and high doses of cyclophosphamide, which can increase the risk of heart problems. These and other therapies may also impair the future fertility of cancer survivors. The module further discusses how women who are already pregnant when diagnosed with cancer face their own unique dilemmas, as many therapies may affect the development of a fetus.

The ASCO modules also provide sample questions for health care providers to ask young patients about various aspects of their health. In addition, it provides resources for clinicians and patients to support their needs. This information provides the framework for medical professionals to increase their understanding about cancer in young people and better care for them. Clinicians with detailed questions about fertility and cancer treatment can also call the Oncofertility Consortium‘s FERTline hotline at 866/708-FERT (3378).

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