The Dana-Farber Cancer Institute, in Boston, Massachusetts uses MyOncofertility.org to explain reproductive options to their patients. The Survivorship Program at Dana-Farber is developing online tools to discuss the fertility concerns that men and women face when being treated for cancer. In order to clearly explain some of the biology and techniques, the website links to animations on MyOncofertility.org. We hope that the institute and their patients enjoy the videos!
Jonny Imerman is a two-time testicular cancer survivor and founder of the cancer advocacy group, Imerman Angels, which connects cancer patients and their caregivers with the one-on-one support of cancer survivors. Last Friday, Jonny visited the and discussed his motivation behind Imerman Angels.
Imerman understands that people undergoing cancer treatment benefit from developing relationships with cancer survivors who understand what they are experiencing. In fact, he calls people currently undergoing treatment, cancer fighters, not patients. According to Imerman, it indicates, “You can do something about your cancer. You are not passive in your treatment.”
Imerman founded Imerman Angels after he completed treatment for his own cancer and returned to the hospital to help young patients who were undergoing treatment. “I would end up talking to these cancer fighters for hours and could see the effect that talking had on them,” says Imerman. With a passion for the cause, Jonny established Imerman Angels in 2003. In just a few years, “We developed the largest group of cancer survivors dedicated to one-on-one support of cancer fighters,” says Imerman.
Cancer survivors, called Mentor Angels, interested in getting involved with the organization fill out a questionnaire online or over the phone discussing a wide variety of topics about themselves and their cancer. This allows cancer fighters who call Imerman Angels to be matched up with an Angel within 24 hours. Once the group brings people together, they also follow up within one week to make sure the cancer fighter gets the support needed.
Imerman Angels also assists the caregivers of cancer patients, including parents, children, and friends. Imerman developed the organization so, “Parents with a child in treatment can talk to families that were in the same place 5 years ago.” As with cancer patients, this provides emotional support to caregivers.
In 2009, alone, Immerman Angels made connections for more than 1,400 cancer fighters. Further growth of the organization, such as increasing the number of survivors in the program, will allow Imerman Angels to support more cancer patients and their caregivers.
More than two years ago, Kara DeFrias began a blog about her journey to conceive a child. Over two years, this journey was unsuccessful. In the attempt to determine the cause of her infertility, doctors discovered that Kara had uterine cancer in February of 2010, at age 34. The cancer was still relatively early so while Kara had to undergo a surgery to remove her uterus and ovaries, Kara did not need chemotherapy or radiation. Prior to the surgery, Kara began working with members at the University of California, San Diego to undergo embryo banking. When Kara’s uterus and ovaries were removed, Kara donated some of her ovarian tissue to support the research at the Oncofertility consortium. Since her uterus was removed, Kara and her husband have begun to look into getting a surrogate for their child and it is looking promising. Kara’s chronicles are an inspiration to other fertility preservation patients. Read them here.
Radiation to Ovaries Increases Risk for Stillbirth: A Potential Use for Ovarian Tissue Cryopreservation?
Radiation therapy is a tried-and-true method for treating cancers. However, this treatment also causes tissue damage and DNA mutations to the patient. Damage to the sexual organs or DNA mutations within male sperm or female eggs may cause pregnancies to result in miscarriages, stillbirths, or neonatal death just after birth. The effects of radiation on the offspring of cancer survivors are not well studied. A recent study of patients from the Childhood Cancer Survivor Study shows that radiation to most parts of the body do not cause an increase in stillbirths or neonatal death. However, radiation to the ovaries and uterus does increase this risk.
In the paper titled “Stillbirth and neonatal death in relation to radiation exposure before conception: a retrospective cohort study,” stillbirth or neonatal deaths occurred in 2% of pregnancies from cancer patients not treated with radiation therapy. Those with low doses of radiation to the uterus and ovaries also reported few cases of these fetal deaths (1-4% of pregnancies). However, 18% of cancer patients who received high levels of total radiation exposure reported pregnancies that resulted in stillbirth or neonatal death.
The cancer survivors in the paper that were at high risk for fetal loss were exposed to radiation levels equal or greater to 10 Gy (call gray), the unit of measurement for absorbed radiation. To give you an idea of that level of radiation, if a person was exposed to 10 Gy at one time, they would die within one month. But spread over the weeks and months of cancer treatment, this technique actually saves lives.
Interestingly, of the women treated with uterine or ovarian radiation prior to their first menstrual period, lower levels have greater effects on future pregnancies. In younger women, radiation treatment as low as 2.5 Gy can cause a 13% risk of later stillbirth or neonatal death.
In contrast to radiation, chemotherapy with the alkylating agents that most frequently cause ovarian failure did not increase the likelihood that pregnancies would result in stillbirth or neonatal death.
The study made me wonder if women treated with ovarian radiation therapy could use ovarian tissue cryopreservation. This could provide fertility preservation for women with a variety of pelvic cancers. However, the authors in the article suspect that the increase in stillbirth and neonatal death in these cancer survivors may be due to tissue damage of the uterus. Because the uterus and ovaries are so close, they could not determine if one organ or both are causing fetal death. Further research will be needed to determine the cause of increased stillbirths and neonatal death in these cancer survivors and to determine if ovarian tissue cryopreservation can preserve their fertility.
In 2007, the first book about Oncofertility discussed many of the scientific and medical advances available to cancer patients wishing to preserve their fertility. Collaborators at the now examine the humanities and social science aspects of the field in the book Oncofertility: Ethical, Legal, Social, and Medical Perspectives. These experts also emphasize other important issues in fertility treatments for cancer patients including communication, economics, history, and religion. The book is now available for pre-order on Amazon.com.
I read an article last week and just can’t stop thinking about it. The article, posted in the New England Journal of Medicine, is a case study of a patient at Massachusetts General Hospital. Briefly, the case study tells the story of a woman who suffered a blood clot that traveled to the lungs and prevented oxygen from getting to her brain. While ventilators kept her heart beating, the patient was officially diagnosed as brain dead. Despite this poor prognosis, the patient’s husband and parents requested that the woman be kept alive so she could undergo egg banking.
As you may know, egg stimulation requires hormone stimulation for at least two weeks. While there are some cases of sperm banking when men are in comas, or even after death, these procedures take a matter of minutes. Since egg banking would take weeks, the doctors at Massachusetts General Hospital decided to bring a variety of experts in on the case to decide the ethics of keeping the brain-dead woman alive for two weeks in order to stimulate her ovaries to produce eggs. They examined the legal, ethical, historical, medical, and personal issues in the compelling case
In the end, the doctors made a decision based on the best interests of the woman. I won’t give away the ending but I highly suggest thateveryone interested in fertility preservation read the article attached here:
Patients with cancer and those in need in of stem cell treatments often risk losing their fertility in exchange for a clean bill of health. Fertility preservation options give these patients the ability to have children. Additional patients, such as those with autoimmune diseases, can also benefit from fertility preservation.
Many people develop autoimmune diseases, such as rheumatoid arthritis, systemic lupus erethematosus, and sclerodoma, before or during their childbearing years. These diseases may inherently affect fertility or require treatments that inhibit reproductive ability. A variety of treatments, such as nonsteroidal antinflammatory drugs (NSAIDs) and chemotherapeutic agents can cause decreased sperm counts or affect the functioning of the ovaries.
As many of 80% of women with systemic lupus erethematosus, or lupus, who are treated with the alkylating chemotherapeutic agent called cyclophosphamide, experience at least a year without any periods, called amenorrhea. Another treatment for lupus, MMF, short for mycophenolate mofetil, may help women with less severe forms of the disease and who would like to preserve their fertility. Even women who do not initially lose ovarian function, indicated by amenorrhea, may still be at risk for early menopause and should be aware of this risk.
So what factors make people more or less likely to lose fertility from autoimmune diseases? Age, dose of treatment, and the inherited genetics of a patient all play a role. Prior to treatment, men may want to proceed with sperm banking. Women can undergo hormone stimulation to release multiple eggs that can either be immediately cryopreserved, or fertilized and then cryopreserved. Unfortunately, hormones may aggravate autoimmune diseases so women should also consider ovarian tissue cryopreservation. People who are interested in learning more about their fertility and autoimmune diseases should contact their doctor or call the FERTLINE.
This past Monday, Sarah Halberstadt, the National Program Manager for the group Bright Pink came to visit us at the . Bright Pink is a not-for-profit organization that educates and supports young women who are at high-risk for breast and ovarian cancer. The members of Bright Pink include women with a family history of these cancers and those who have high-risk mutations of the BRCA breast and ovarian cancer genes. These women have many issues to deal with at a young age, including a greatly increased chance of developing cancer and fertility issues. Halberstadt stated that at Bright Pink, “We divide our programs into three areas: education, support, and providing a sense of community for women who are at high-risk.”
These women have many options and decisions to deal with, which is actually a good thing. “Especially with breast and ovarian cancer, we are so lucky that there are incredible surveillance programs, preventative drugs, and surgeries, if that is what you want to do,” Halberstadt said. One pre-emptive treatment that these women often consider is ovarian tissue cryopreservation. Ovarian tissue cryopreservation decreases a woman’s risk for ovarian cancer and may allow her to preserve her fertility. These high-risk women can turn to the FERTLINE for medical advice from a Patient Navigator and to Bright Pink for community support.
Bright Pink provides the Pinkpal One-On-One Peer Support Program, which Halberstadt describes as, “A matchmaking service without all the romance and fancy dates. Basically, It is a one-on-one peer support program that pairs a women who is looking for some support with one who has walked a mile in her shoes.” They also provide Breast Cancer 101 presentations to communities around the country and will be launching an online video of the information in September with the help of the Cancer Support Community.
They provide printed materials to physicians around the country to pass around to patients including two Little Bright Books. One is targeted to young women who are themselves at high-risk for breast and ovarian cancers. According to Halberstadt, “It is an A to Z guide on how to be proactive with your health as a young woman and how to know what your family history means about your risk.” The other book targets breast cancer fighters and survivors. It guides them through talking to family members about their risks, a process that is also therapeutic.
As the members of Bright Pink are mostly young women, they also like to relax through fun outreach events. As the organization grows, so will their programs. We look forward to hearing more about Bright Pink in the future!
The links between breast cancer and genetics are well established. However, it is not know exactly what makes some women more likely than others to lose their fertility after cancer treatment. We recently wrote a blog post on the correlation between amenorrhea, the absence of a menstrual period, and cancer survival. A new study titled Association of Cyclophosphamide Drug-Metabolizing Enzyme Polymorphisms and Chemotherapy-Related Ovarian Failure in Breast Cancer Survivors from the University of Pennsylvania recently found that menopause after chemotherapy is linked to certain genes, and therefore may be inherited.
In the study, published in the July version of the journal Fertility and Sterility, scientists used a method called a “candidate gene approach” to determine the relationship between a year of amenorrhea, which is the clinical definition of menopause, and genetics. They examined a group of genes, called CYP, which may be involved in the metabolism of a chemotherapy reagent used in most breast cancers. The scientists looked at sites of common variations, called single-nucleotide polymorphisms, or SNPs, within the candidate genes, and recorded menstrual history after chemotherapy treatment. They found that women under the age of 45 at the time of chemotherapy were less likely to enter menopause if they had a specific variation of the CYP3A4 gene that may increase the breakdown of some chemotherapy drugs.
Irene Su, MD, the first author on the study hopes to use this information to predict the likelihood that a woman will enter premature menopause with cancer treatment. With her research,” The goal is to give you a more accurate idea of the risk factors for ovarian failure and in what timeframe,” states Su. Armed with this information, she hopes that doctors can better advise their patients about fertility options and “make better decisions prior to chemotherapy.”
Receiving a cancer diagnosis is traumatizing. Your doctor runs some tests, possibly sends you to a specialist, and then tells you the bad news. Within a few days, you must process this life-changing information, decide on and receive fertility preservation, and start cancer therapy. But what happens if your health insurance doesn’t cover the some of these costs?
Fertility preservation is pricey. Men who participate in sperm banking, or cryopreservation, can expect to pay about $800 for the initial collection and then between $200-400 every year for storage. Treatments for women are much more expensive, starting at a minimum of $10,000 and easily increasing to more than $20,000. Many of us don’t have this kind of money lying around the house and hope that health insurance will cover all treatments associated with cancer. However, that doesn’t always happen.
Insurance companies currently only cover the costs of treating some adverse effects of cancer therapies. In 1998, the Federal Women’s Health and Cancer Rights Act mandated that when an insurance company covers a mastectomy for a woman with breast cancer, it must also pay for the cost of breast reconstruction. Insurance also often pays for wigs for cancer patients with chemotherapy-induced hair loss. Even precautionary treatments are sometimes covered, such as blood storage for a patient that may need a transfusion of their own blood after cancer treatment.
Then why isn’t fertility preservation covered by health insurance? One reason is bureaucracy. Most insurance companies don’t cover infertility treatments and consider fertility preservation to be in the same category. However, hospitals have successfully covered these treatments by billing fertility preservation as:
1) Cancer treatment
2) Procreative management
Friends of therecently met with Washington DC insiders calling for an insurance mandate to cover fertility preservation for cancer patients. Though these people were enthusiastic, it may still take years to pass any legislation. We will keep you informed as progress is made on this issue.