An international collaboration between cancer organizations is launching the International Charter of Rights for Young People with Cancer. This group is leveraging their influence to improve cancer diagnosis and treatment for young people. The Huffington Post recently posted an article on the charter that hopes to develop relationships between cancer patients, advocates, survivors, friends, and families affected by cancer. Read it here.
Theadvances the reproductive future of cancer patients by maintaining their fertility. However, cancer patients and survivors can also suffer from sexual health problems independent from fertility.
Receiving a cancer diagnosis can significantly affect feelings of sexuality, especially in cancers of the sexual organs, such as the testicles. Cancer treatments such as surgery and chemotherapy can also greatly affect feelings of sexuality. For example, women with breast cancers often must deal with mastectomies and hair loss simultaneously, which can affect feelings of femininity.
Sexual health issues from cancer are not purely psychological. Cancer treatments can cause vaginal dryness that result in painful intercourse. Radiation to the pelvic area can also damage the nerves around the genitals, resulting in decreased stimulation and problems climaxing during sex.
While sexual health issues related to cancer have long been an issue, “Women who are getting help for fertility in the context of cancer, aren’t necessarily getting help for sexuality issues,” states Dr. Stacy Lindau, the director of the Program in Integrative Sexual Medicine (PRISM) at the University of Chicago. The PRISM clinic uses a multidisciplinary and cross-institutional approach to solving sexual health problems of cancer patients. This clinic concentrates on helping female cancer patients with issues because, according to Dr. Lindau, “Until very recently there hasn’t been a place for them to get help with their sexuality.”
Dr. Lindau also studies sexuality as an Associate Professor of Obstetrics and Gynecology at the University of Chicago. “I became interested in the topic of sexuality because I felt frustrated that I didn’t have information to give patients,” says Dr. Lindau. In researching the subject, she found that “The prevalence of sexual problems in women who have survived cancer is high, higher than same-aged women who haven’t had cancer and, for a large part, these problems are left untreated.” While men with treatment-induced sexual dysfunction are prescribed Viagra “women with cancer are not treated similarly.”
Thus, it is important for oncologists and other cancer professionals to be aware of both fertility and sexuality issues in cancer patients and survivors.
Over the past decades, advances in fertility, such as in vitro fertilization, also increased reproductive options for female cancer patients. Prior tobeginning chemotherapy and radiation, patients can now freeze down their eggs or embryos to be used after beating the cancer. Unfortunately, these options are not available to everyone. Both egg and embryo cryopreservation require a woman to undergo hormone therapy to cause egg release, which can take two to three weeks. In addition, the same hormones that cause egg release also stimulate many breast cancers. Thus, women needing urgent cancer treatments and those with hormone-sensitive cancers are not eligible for egg and embryo cryopreservation.
One of the newest techniques in fertility preservation can preserve the fertility of many women not able to participate in hormone therapy. This method,called ovarian tissue cryopreservation (OTC), involves the removal of the entire ovary, cryoprotection and freezing, and then reimplantation after a woman in cancer-free and ready to have children. This process requires a short outpatient surgery where physicians make a small incision in the abdomen and use modern surgical techniques to remove the ovary with the aid of a miniature camera. The outer layer of the ovary, which contains
maturing eggs, is then sectioned into thin pieces and frozen down to very low temperatures (colder than negative 300ºF). Once the woman successfully beats her cancer with chemotherapy and radiation, these ovarian tissue sections are then reimplanted during a second procedure.
So who can participate in ovarian tissue cryoprotection? Any patient with a localized cancer outside of the pelvis can be a candidate for OTC. Women with blood-born cancers, such as leukemia and lymphoma, and those with ovarian or uterine cancers are not candidates for fear that reintroducing ovarian tissue will also reintroduce the cancer to a woman in remission. In contrast to previous methods, even young children are eligible for this fertility preservation technique. Imagine a 6 month-old girl going through OTC today. In 2040 she will still be thanking her parents and her oncologists for giving her the dual gifts of cancer remission and fertility.
In 1990, Mary-Claire King, PhD made a groundbreaking discovery: she identified a gene that was similar in people with inherited forms of breast cancer. She identified this gene by examining families with rare forms of breast cancer, such as those occurring early in life, in both breasts, or among male family members. The gene had very similar sequences, or mutations, among family members with breast cancer even though it is quite variable in the general population. Dr. King and others named this gene breast cancer 1, or BRCA1, and discovered that some mutations are associated with a greater than 60% lifetime risk of developing breast cancer.
Why are mutations in BRCA1 associated with cancer? The BRCA1 gene encodes a protein that repairs DNA when it is broken. When BRCA1 is mutated, damaged DNA is not repaired, potentially causing a cell to divide uncontrollably and become cancerous. Another related gene, called BRCA2, is also associated with increased breast cancer risk.
Interestingly, people with BRCA1 or BRCA2 mutations are also at greater risks of developing other cancers, especially ovarian cancer. Depending on the mutation, this risk can be as high as 55% over the course of a woman’s lifetime.
With the popularization of genetic testing over the last decade, people with the most severe BRCA mutations have taken a pro-active approach to cancer risk. These women have often seen family members die from cancer and consider mastectomies to preemptively stop any cancer in its tracks. Women may also opt for surgical ovarian removal, called oophorectomy, which causes infertility and thrusts them into menopause. As such, younger women often struggle with desires to have children and those to prevent cancer.
Current techniques in oncofertility, such as ovarian tissue cryopreservation (OTC), are not options for BRCA patients. OTC entails removal of the ovaries, cryoprotection and freezing, followed by reimplantation when a woman is ready to conceive a child. Unfortunately, ovarian implantation may also implant cancerous tissue into a BRCA patient and is not used for these women. Current research at the is working to develop new treatments for BRCA patients.
A recent study in the New England Journal of Medicine shed some light on the link between chemotherapy and loss of ovarian function. The treatment of cancers, while lifesaving, can cause infertility in both men and women. Cancer therapy reduces fertility by affecting the ovaries. Chemotherapy and radiation can deplete the number of immature eggs, called follicles, and cause ovaries to lose hormone secretion. The type of therapy and the age of a woman can both affect susceptibility to infertility. For example, alkylating chemotherapeutic agents are potent inhibitors of fertility because they attack both dividing and non-dividing cells in the ovaries.
The study by Sandra M. Swain, M.D. et al. investigated the effectiveness of a chemotherapy regimen for breast cancer and found that successful treatment correlated with a loss of menstruation, called amenorrhea. In the study, amenorrhea was classified as loss of menstruation for at least 6 months in the two years following chemotherapy. In these patients, amenorrhea correlated with increased survival eight years after treatment and decreased disease remission.
Why might successful cancer treatments also cause amenorrhea? One possibility is that reduction in ovarian function, which produces estrogen, may prevent cancers from expanding. Breast cancers can be divided into two types-those with and without estrogen receptors. Estrogen released from the ovaries stimulates estrogen receptor-positive cancers to grow and, thus, damage to the ovaries may prevent growth. Interestingly, the study found that the link between amenorrhea and survival occurred in women with both estrogen receptor-positive and –negative cancers. This indicates that estrogen may not cause increased survival rates in women with loss of menstruation. Instead, decreased ovarian function may inhibit tumor progression in other ways. One final possibility is that ovarian failure may simply be a byproduct of successful cancer therapy.
In the future, the link between amenorrhea and survival may be used to develop tests of molecular indicators, called biomarkers. The biomarkers could be used during cancer treatment to signal when a therapy had reached success, rather than waiting for amenorrhea to occur. Further work is also needed to determine the cause of treatment-induced amenorrhea and examine ways to prevent the loss of fertility from such therapies.
We posted last week on the Cancer Rights Conference in Chicago, Illinois hosted by the Disability Legal Resource Center. The health care reform bill was one of the most discussed topics at the conference. Formally called the Patient Protection and Affordable Care Act, the bill instates changes in health insurance coverage over the next decade. Many of these changes must occur by specific dates, including July 1, 2010.
Starting today, Americans that have been denied health insurance because of pre-existing medical conditions, such as cancer, will be given the opportunity to buy insurance through high-risk insurance pools. The federal government allocated more than 5 billion dollars across the 50 states to establish such pools, which will cover people who have been without insurance for at least 6 months. People who live in the 19 states that are not participating in the program will have the opportunity to join a federal high-risk health insurance pool.
This is a viable option for young cancer survivors who age out of parental health insurance plans and are denied coverage from other companies. In contrast to most private insurance plans, the high-risk pools will not have annual or lifetime spending limits.
The federal government is also launching a web portal to explain the new and upcoming changes in health insurance options. Initially, it will include state-specific options for high-risk insurance pools, Medicaid, and the Children’s Health Insurance Program (CHIP). Over time, the site will include additional adjustments in health insurance reform that will be executed through 2020. Starting in 2014, new health insurance exchanges will replace the high-risk pools and allow any American to gain access to affordable health care. We will keep our readers informed as to how all the changes in health care policy will affect cancer and fertility preservation.
Yesterday, we posted a blog on the I’m Too Young for This! Cancer Foundation. The Robert H. Lurie Comprehensive Cancer Center at and I’m Too Young for This! joined forces with 140 other organizations in 2006 to develop a national agenda for adolescent/young adults (AYA) oncology. The Livestrong blog recently posted an article on this coalition, called the Young Adult Alliance. Read the post and watch an interview of with the Director of the Young Adult Alliance, Kelli Craddock here.
In 1995, Matthew Zachary was a typical, yet talented, college student attending Binghamton University in upstate New York. While studying to become a music composer, Zachary was diagnosed with a brain cancer called medulloblastoma. After successfully fighting the cancer, Zachary founded I’m Too Young for This! to support young adult cancer patients and raise awareness of the precise needs of this community.
Young adult cancer patients face a variety of hurdles along their medical journeys. While survival rates for young children and elderly cancer patients increased over the past few decades, rates for 15 to 40 year-olds are unchanged. According to Zachary, ”Delayed diagnosis has proven to be a significant contributor as to why young adults have not seen the same improvement in survival rates as other age groups over the past 30 years.” Zachary was himself left undiagnosed for 6 months and tries to prevent this from occurring again through persistent outreach to primary care physicians.
Once patients are diagnosed, doctors often fail inform them about young adult-specific issues, such as the effect of cancer therapies on fertility. Since most cancer research and clinical trials are currently performed on the elderly, cutting-edge cancer treatments are also tailored to older people. I’m Too Young for This! “taps into the anger and hostility of young cancer patients,” who feel ignored by the medical community, says Zachary.
I’m Too Young for This! also hosts informal Happy Hours across the country and an Annual Gala to promote its mission and provide entertainment to young cancer patients. It is also developing additional events that will connect patients undergoing treatment, those in remission, and healthcare professionals in a continuing effort to ensure that young cancer patients get the best support possible.
A few days ago, I posted a blog on the history and techniques of sperm banking. But what happens to the children born from this method? No studies currently examine the mental health of sperm banked offspring who were raised by their biological fathers. Instead, studies look at children who are products of both sperm banking and sperm donation. Only two reports follow these children into adulthood. And, of course, they contradict each other.
One study, in the journal Pediatrics, performed a longitudinal study on the psychological health of children born from sperm donation. The authors, Nanette Gartrell and Henny Bos, stated that these children exhibited better mental health than the general population through age 17. Interestingly, the lesbian mothers, who were older than parents in the comparison group, raised all the children in this study and achieved pregnancy intentionally. These two differences may explain why sperm donor children performed better on psychological tests than the general population.
A report released by the Institute for American Values arrives at the different conclusion that adults born from sperm donation are at risk for mental health issues. Such individuals still make up a minority of the children surveyed. When asked,” Have you ever been prescribed medication for depression or other mental health problems,” 31% of sperm donor-conceived adults and 28% of adults raised by biological parents said “Yes.” In fact, 20% of sperm donor offspring had donated their own gametes or served as a surrogate. This report was not published in a journal and should be read with caution because qualified experts did not review it.
These studies raise some interesting questions but it is important to highlight the lack of studies investigating psychological issues, if any, of sperm donor offspring reared by biological fathers. This population was low in the past. With the increase in preventative sperm banking prior to medical treatments, it is an important subject to be addressed in the future.
While much time and energy is spent investigating new techniques in female fertility preservation, the male side of things does not receive much attention. This is primarily because there is one quick and easy way for men to preempt medically induced infertility, that is, sperm banking. This common procedure actually consists of sperm collection, freezing and thawing (cryopreservation), and artificial insemination.
An Italian monk described the first case of successful sperm cryopreservation in 1776. He reported that frozen and thawed sperm were still mobile. The monk later used this technique to successfully inseminate and breed animals. Interestingly, it took a few decades before either of these techniques was used in humans. It wasn’t until the 1790s that human artificial insemination was first reported, when the fresh sperm of a husband was used, in a clinical setting, to impregnate his wife.
While cryopreservation of animal sperm was increasingly used in the twentieth century for livestock breeding, human sperm did not survive the freezing and thawing process as well. It was not until scientists discovered that sugary glycerol prevented ice crystals from forming in frozen sperm that cryopreservation became truly viable. The development of liquid nitrogen tanks in the 1970s then made long-term storage an option for patients.
Currently, sperm banking is frequently used prior to medical treatments that may reduce fertility, such as chemotherapy and stem cell transplants. However, sperm banking is not an option for every one. According to Dr. Robert Brannigan, Associate Professor in the Department of Urology at’s Feinberg School of Medicine, “A patient generally needs to have had a nocturnal emission or regular ejaculation in order to be able to provide a sample for sperm cryopreservation.” Currently, there are no proven fertility preservation treatments for prepubertal boys.
Fortunately, research trials are currently underway to investigate the success of cryopreservation of immature testicular tissue. Brannigan cautions, “To date, no center has successfully taken immature testis tissue and developed it into mature sperm.” However, given the advances in ovarian tissue cryopreservation over recent years, it is possible that testicular cryopreservation of a 5 year-old today will give him a chance to have children by the time he is an adult. Interested readers in this can find centers that perform this investigational technique by calling the FERTline Fertility Preservation hotline.
Though sperm banking is available at relatively low costs, many male patients do not hear about possible fertility risks due to cancer treatment until it is too late. Patients can raise awareness of this issue by encouraging their oncologists to spread the word to newly diagnosed patients. Do it today!