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.

As you may have heard us mention a time or two before, the 3^rd book in the oncofertility series, Oncofertility Medical Practice: Clinical Issues and Implementation, was just released on Amazon.com and is available for purchase. Besides just letting our readers know that important piece of information, we’d also like to give you an inside look into the wealth of knowledge this informative new book contains. To begin, let’s take a look into chapter 13, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” by Kristin Smith, Brenda Efymow, and Clarisa Gracia to see the true role of patient navigators in oncofertility management.

Adolescents and young adults facing a new cancer diagnosis need immediate access to oncofertility care in order to maximize their fertility preservation options. In order to do this, patient navigators act as the go-between among a variety of health care providers including oncologists, and reproductive specialists, during a highly stressful and complex time following a cancer diagnosis. According to the authors, “Within the health care setting, the patient navigator bridges institutional and disciplinary boundaries so that cancer patients are able to receive timely information regarding fertility preservation options.” Once cancer patients receive this pertinent information, they are better able to make informed decisions about their course of treatment.

Cancer patients making the decision to preserve their fertility have a limited timeframe to process and make this decision that individuals not facing a cancer diagnosis often do not have to navigate. They do not have the time to flesh out their decision and/or save up for the expensive procedure.  According to the authors, “The average out-of-pocket cost for invitro fertilization (IVF) in the United states is $12,500.” A fertility preservation patient navigator can assist patients by directing them to programs established to defray the cost of fertility preservation, or draft appeal letters to insurance companies, which can result in a savings of thousands of dollars.

Finally, patient navigators act as the “experts” in fertility so that oncologists don’t have to be.  They serve not only the patient, but also the provider, making a complex topic more accessible to healthcare professionals who may be uncomfortable with their level of knowledge in oncofertility, increasing the likelihood that they will not refer patients for consultation.  At Northwestern, Fertility Preservation Patient Navigator Kristin Smith works closely with healthcare professionals, shepherding patients between specialists in oncology, urology, and reproductive endocrinology.  Kristin is also the face of the new Fertility Preservation Patient Navigator website, designed to provide virtual assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis. To learn more about this website, read our blog, “Introducing the Virtual Patient Navigator for Fertility Preservation,” by Kate Waimey Timmerman, or click here to go directly to the website.

To learn more about the Patient Navigators’ role in fertility perseveration, read, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” in Oncofertility Medical Practice: Clinical Issues and Implementation.

The Northwestern Community (university, hospital, faculty foundation, etc.) is extremely comprehensive, and offers so much in the realm of cancer care. We like to think that we’re a one stop shop for anyone dealing with a cancer diagnosis – taking care of patients’ physical, mental, and emotional needs not only while in treatment, but also in survivorship. One of the great services that Northwestern provides is a forum for patients, caregivers, and survivors of breast cancer to meet and discuss treatment options, symptom management, exercise & nutrition and survivorship, in a supportive environment.

The Lynn Sage Breast Cancer Town Hall Meeting is a free event that takes place once a year for individuals who are looking for information on moving forward after breast cancer. If you have questions about treatment options, nutrition and physical activity, family history and supportive oncology services, this is a great place for you to come and learn, interact, and take in all the information that you need. This interactive discussion about breakthroughs in breast cancer is a unique opportunity to have any of your cancer-related questions answered by experts at Northwestern’s Lurie Cancer Center. Participants also can visit the extensive range of exhibitors to discover community breast cancer resources, and learn more about local and national organizations providing support. Some panel topics are:

• Nora Hansen, MD – Understanding Breast Cancer Surgery Options
• Virginia Kaklamani, MD, DSc – Cancer Risk & Genetics
• Virginia Nothnagel, MS, RD, LDN – Eating Well & Staying Active
• Timothy Pearman, PhD – Facing Forward: Life after Cancer

The Lynn Sage Breast Cancer Town Hall Meeting takes place Sunday, September 30^th from 1-4pm CDT, and is a free event open to the public. Learn more and register for the Lynn Sage Breast Cancer Town Hall Meeting here.

Recently, one of our friends and cancer advocates, Jonny Imerman, was featured on CNN Health, in an article entitled “Pairing ‘Angels’ with Cancer Patients,” showcasing the organization he began 10 years ago, Imerman Angels. Imerman Angels is an organization founded in 2003 that carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with their experience.

In 2001, at 26 years old, Imerman was diagnosed with testicular cancer. He underwent an aggressive chemotherapy regime that lasted 5 months only to have the cancer return one year later, this time in his spine. Throughout his cancer treatment, he would walk the halls of the hospital and talk with other young cancer survivors, hoping to make a connection through their shared experience, and offer hope and support. Imerman says, “It was instant friendship. You’re not talking surface level. You’re talking about life and death. My goal was to get in there and motivate patients so that they wanted to jump out of their chemo bed and literally start swinging at this thing.”

Once Imerman was deemed “cancer free,” he was motivated to start engaging the young adult cancer community, and connect patients with other patients or survivors experiencing a similar health crisis. Imerman saw the value in providing a service enabling a cancer fighter to talk to a cancer survivor, who not only had beaten the same type of cancer, but who also was the same age and gender as the fighter. He started reaching out to doctors and hospitals and was referred to other cancer survivors. He collected information from patients, networked with other patients and survivors, and became a cancer matchmaker.

Today, a decade later, Imerman Angels has a database of more than 4,000 survivor mentors. The group tries to connect people living in the same city who can meet in person, but its database also extends overseas, and some pairs communicate via phone and Skype. On average, the group creates five to seven pairs a day and has made more than 8,000 matches in more than 65 countries.

Although Imerman Angels works with all age groups, the majority of their “angels” are between 18-40, a demographic often underrepresented in the cancer care community. According to Jenna Benn, a young woman diagnosed with a rare form of lymphoma when she was 29, “Imerman Angels is incredible in the sense that they’re able to pair you up with someone that looks just like you and that gets it and that can tell you it’s going to be OK. All of a sudden, your reality doesn’t seem so strange.”

Read more about Jonny Imerman and Imerman Angels at CNN Health in, “Pairing ‘Angels’ with Cancer Patients.”

There are 1.7 million cancer cases a year in the United States that affect individuals and their families and nearly 3 million children live with a parent who has cancer. Often, support is available for the parent undergoing treatment, but the special emotional needs of children of adult cancer patients is not as readily addressed. Kids often have to deal with the aftermath of their parents’ diagnosis on their own, and if parents themselves are struggling with illness, their sons and daughters frequently miss some of the basic tenants of childhood – like camp! In response to this need, Camp Kesem– a college-student-run summer camp for kids whose parents have (or have had) cancer – was established in 2000 providing children with the opportunity to be part of a “non-theraputic” environment where kids can just be kids. Camp Kasems’ missions are:

• To provide children affected by a parent’s cancer with a supportive, lifelong camp community that recognizes and understands their unique needs.
• To empower college students to make a difference and build invaluable leadership skills by developing and managing every aspect of their Camp Kesem chapter.

Camp Kesem, allows college student leaders nationwide to create free, life-changing summer camps for children affected by a parent’s cancer. Student leaders are full-time undergraduate students at universities around the country.  In addition to their academic workload, these students each take on different aspects of the Camp Kesem planning process in order to make Camp Kesem happen.

Camp Kesem campers and counselors engage in activities like sports, arts and crafts, and drama to provide campers with an easy, and fun week free from the stress of their everyday lives.  Campers also participate in “Cabin Chats” with their fellow campers and counselors, giving children the chance to share their experiences with each other. Camp Kesem fosters a supportive community among campers going through similar experiences at home. Learn more about Camp Kesem here.

Around 10% of all people diagnosed with cancer are in their reproductive or pre-reproductive years (under age 45). This means that, each year, approximately 133,000 women, men, and children who are diagnosed with cancer are at risk for infertility due to the very treatments (e.g. chemotherapy, radiation, and surgery) that can save their lives. Given improved survivorship rates, fertility concerns have emerged as an important quality of life issue to cancer survivors and their families. Oncofertility, a new and interdisciplinary field at the intersection of cancer and fertility, is working to address potential infertility as a result of cancer treatment.

Although more cancer patients are being offered and are using fertility preservation technology (FPT), its cost and the lack of insurance coverage for it are often the major reasons given by oncologists for why they do not provide information on fertility preservation options to their patients. One method of ensuring people in their reproductive years or children who are diagnosed with cancer have access to and insurance coverage for FPT is to create a legal mandate requiring insurance companies to cover FPT for cancer patients.

So this is precisely what we did!…Read the rest of this article on the blog of the Alden March Bioethics Institute at Albany Medical Center.

Suleika Jaouad is a 24-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” appears weekly in the New York Times. Suleika chronicles her experience as a young adult with cancer and the unique challenges she faces such as infertility, psychosocial issues, and survivorship.

I first came across her blog several months ago when it came to my inbox as a “Google Alert.” Suleika had written a post about being a young cancer patient facing infertility. She wrote, “Leukemia is an emergency, and oncologists are the first responders: They are trained to beat cancer; everything else must take a back seat. It was only after I asked about fertility that the doctors told me about the available options.” Faced with the harsh reality that her cancer may leave her infertile, she chose to undergo fertility preservation.

The decision to preserve her fertility was not made in haste. Her chronicle of the decision to bank her eggs drew me in and I began to follow her blog regularly. At the time, Suleika only 22, wrote about how being diagnosed with an adult disease ( acute myeloid leukemia – a form of cancer usually reserved for the elderly) thrust her into an adult world she wasn’t quite ready to exist in yet. Still feeling like a child and reliant on her parents in so many ways (emotional, financial, etc…), she was suddenly forced to live her life “out of sequence.”

Yet, deciding to preserve her fertility wasn’t the hardest decision she had to weigh after her initial diagnosis.  Moreover, exactly which method was going to be the most effective and least disruptive to her present and future life, proved to be the most difficult decision to make. She writes, “I looked across the table at my boyfriend. We had met only eight months earlier, and here we were, considering the benefits of freezing embryos with his sperm (the option with the greater chance of success) versus freezing only my eggs. It was awkward territory.” Suleika put off the decision for as long as possible, but when pressed by her medical team, within minutes she had made the decision to bank only her eggs.

Suleika went to her appointments at the fertility clinic with her boyfriend, feeling out of place among the other women, wearing her college sweatshirt with the caption, “Class of 2010.” Obviously older than her, the other woman were nonetheless all there for the same reason – hoping to create life, one way or another.

Read more “Life Interrupted,” here.

Over the last twenty years, advances in fertility preservation techniques have made oncofertility more accessible to women diagnosed with cancer or other fertility impacting diseases. Despite this good news, the academic journal, Cancer, recently reported that between 1993 and 2007, only 4% of women between the ages of 18-40 diagnosed with cancer, sought out fertility preservation. In Cancer Today, a medical magazine issued by the American Association for Cancer Research, addresses this disparity in a new article entitled, “Fertility Preservation Catches On, But Slowly,” arguing that new cancer patients need information and referrals to reproductive specialists immediately after diagnosis to ensure they have the best possible chance of preserving their fertility if they choose to do so.

Studies show that discussing fertility preservation with a cancer patient may depend on several factors including education, socioeconomic status, sexual orientation, and whether or not the cancer patient already has children. According to Cancer Today, “college graduates [are] up to 40% more likely to be counseled than those without a bachelors degree.” Teresa K Woodruff, reproductive endocrinologist and director of the Oncofertility Consortium maintains that this disparaging information highlights the gap between getting fertility preservation counseling and taking action.  She also argues that “cancer patients need to be seen on that same day as diagnosis or within the next 24 hours,” by a reproductive specialist.

So what can we do to ensure that every young cancer patient has the same opportunity to preserve his or her fertility prior to treatment? The Oncofertility Consortium has led the way not only research, but also in advocacy, making fertility preservation a public discussion so that both clinicians and patients are aware of the potential damage cancer treatment can have on fertility. The more knowledge one has, the more likely they are to make an informed decision in that critical timeframe between diagnosis and treatment.

To read, “Fertility Preservation Catches On, But Slowly,” in Cancer Today, please click here. If you or someone you know needs information on fertility preservation, including options, techniques, clinics, cost, etc., please click on links below for more information.

• National Fertility Hotline (866.708.FERT) to speak with a Fertility Preservation Patient Navigator
• SaveMyFertility: an authoritative resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving their fertility before and during cancer treatment, and protecting their hormonal health after treatment.
• Fertility Preservation Patient Navigator: A website designed to help patients learn more about their options for family building.
• MyOncofertility: A patient education resource provided by the Oncofertility Consortium.

We now bring to you a guest blog from the cancer advocacy group Navigating Cancer Survivorship, which provides education and resources to health care professionals, survivors, and caregivers regarding the continuum of cancer survivorship.

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As previous blog posts have indicated, there are several laws that benefit and protect those coping with cancer. Some of these laws deal with health insurance coverage when participating in a clinical trial. Most recently, Illinois passed the “Qualified Clinical Cancer Trials” law, which has been in effect since January 1, 2012. This law, in essence, requires health insurers to pay for routine patient care expenses associated with qualifying clinical trials. Routine care costs are expenses that patients would have if they were getting standard cancer care, such as office visits, lab tests, and x-rays.

However, as we unfortunately know, it often takes more than a law to ensure that people are protected…to read the rest of this post and learn about the clinical trial laws in your state go to the Navigating Cancer Survivorship blog.

Fertile Action founder and fertility preservation patient advocate, Alice Crisci, shares her thoughts on the challenges patients face when navigating insurance coverage or lack there of for oncofertility procedures.

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By Alice Crisci

Every day, I struggle with the notion that most Americans diagnosed with cancer have to pay out of pocket for fertility preservation. For women, this cost can run as high as $20,000 in some markets. As an advocate, I engage insurance companies on a daily basis trying to get them to evaluate fertility preservation through a different lens other than infertility. I ask this question: “Would a 17-year-old with leukemia really be seeking infertility treatment?”

Breast reconstruction is coded and approved under a cancer diagnosis, and so too should fertility preservation be coded and approved the same way.  We shouldn’t need legislation to force insurance companies to make this change. As a patient advocate, I think the out these insurers are taking by evaluating coverage based on whether or not their plan covers infertility benefits is unethical.

Surely, no insurance plan in America covers cosmetic procedures, and yet we cover breast reconstruction. Remember analogies from your SAT’s:  Cosmetic Procedures: Infertility as Breast Reconstruction: Fertility Preservation. Unfortunately, insurance companies don’t see it that way. They look at it like this: Breast Reconstruction: Cancer as Fertility Preservation: Infertility.  How does that make any logical sense, if we know emphatically, that the cancer will cause infertility?

I recently had a young woman who pursued fertility preservation with a physician she was uncomfortable with because that physician’s fee was significantly lower than the physician this patient really wanted to see. As a recent college graduate with student loans and a part-time job, she felt she had no choice. Isn’t that what the reproductive rights movement has always been about? Choice?

• Choice to use the birth control pill.
• Choice to abort.
• Choice to find an adoptive family.
• Choice to be a single mother.
• Choice to freeze your eggs or ovarian tissue when diagnosed with an illness that could cause infertility.

I don’t yet know if legislation is the answer or if placing public pressure on insurance companies to view fertility preservation under the cancer column, rather than the infertility column, will create lasting change. I do know until I figure out what the answer is, I’ll continue to write my advocacy letters requesting coverage for our patients, and I’ll continue expanding the Fertile Action network of fertility specialists who donate their fertility preservation services to help those touched by cancer preserve their reproductive right to have a baby in the future.