Our undergraduate oncofertility reporter, Meredith Wise, brings us the first of two blogs on Giuliana Rancic and her current experiences with infertility and breast cancer. Mrs. Rancic is using her celebrity to educate the world on these important issues, which gives us all something to reflect upon during this holiday season.

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By Meredith Wise—Every day across the country, women diagnosed with cancer must face decisions regarding their treatment and its potential effect on their fertility. But when a celebrity faces the same decisions, suddenly the idea of oncofertility becomes a hot button issue.

On October 17, Giuliana Rancic, a television host for E! News, announced that she had been diagnosed with breast cancer. Rancic, who had been receiving IVF treatment in an attempt to have a baby, had a mammogram at her doctor’s suggestion. Rancic’s mammogram showed a tumor in her breast, and within a week she underwent a double lumpectomy.

Rancic had recently had a miscarriage following a round of IVF, and she credits the baby she lost with saving her life. Without the miscarriage, she would not have thought to schedule a mammogram.

Rancic and husband Bill have made no attempt to conceal her health issues from the public since the beginning of her IVF treatments, and her latest announcement is no different. On Monday, December 5, Rancic announced that her next step in treatment was to have a bilateral mastectomy, which she underwent on December 13.

According to an interview in People magazine, Rancic’s desire to have children, put on hold by her cancer diagnosis, is one reason that she has decided to proceed with the surgery. Rancic hopes that the surgery will allow her to beat her breast cancer once and for all, and that it will prevent her from having to undergo chemotherapy or radiation that could induce early menopause or interfere with future fertility treatments.

Rather than hide from the press, Rancic has used her celebrity status to put her health problems to good work for the public. She and her husband have appeared on numerous talk shows, answered questions for magazines, and have even Tweeted their appreciation of their fans’ support and prayers.

Rancic’s public battles with infertility and breast cancer serve to increase awareness and mobilize the public in the fight to find methods of fertility preservation. Rancic has chosen to undergo a dramatic surgery because she does not want other cancer treatments to further damage her chances of being a parent.

Rancic initially resisted getting a mammogram, believing that at 37, she was too young to have breast cancer. Now she hopes that by sharing her experience, she can remind others of the importance of early detection.

Hopefully, Rancic’s willingness to include her fans in her battles will not only raise awareness for breast cancer, but will also encourage the public to support finding methods of fertility preservation despite having to undergo cancer treatment. Rancic’s experience can raise awareness of oncofertility so that in the future, other women’s best hope against infertility will not be a surgery as radical as a double mastectomy.

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Meredith Wise is a senior at Northwestern University majoring in Pre-med and English. Her interests in women’s health and fertility started in high school when she shadowed an infertility specialist. She never thought that fertility would ever become an issue for her young friends but when one, Gracie, had tumors discovered on her ovaries, that all changed. Here is Gracie’s story:

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Meredith Wise-The idea of not being a mother one day had never crossed nineteen-year-old Gracie Mahan’s mind.

Gracie, a sophomore at Claremont McKenna College in California, took having children for granted until this past summer. In July 2011, Gracie went to the doctor with complaints of pain during urination, thinking that she would be diagnosed with a urinary tract infection. After several appointments with different physicians, she was forced to contemplate losing her fertility when she was diagnosed with bilateral ovarian dermoid teratomas.

According to the online medical dictionary Medline Plus, dermoid teratomas are tumors made up of skin and skin-like tissues, including teeth and hair. Gracie’s tumors had all three, and they affected both of her ovaries.

The tumors required immediate surgery. The surgeons planned to remove the tumors using a minimally invasive technique, but they warned Gracie that the tumors could require large incisions. If the tumors alone could not be removed, the surgeons would have to remove Gracie’s ovaries. “The doctors were very clear in telling me this,” Gracie says.

After informing Gracie of the possibility of needing to remove her ovaries, her physician told her that the tumors might be cancerous and, if this were the case, that she would need to undergo treatment following the surgery. Gracie feared the results: “If both of my ovaries were removed, I would be completely infertile, and I would begin menopause as a nineteen-year-old girl. Panicked by this thought, I immediately started doing research on infertility.”

Gracie had to face tough decisions that few college students have to make. Her doctors told her that freezing her eggs would not be a viable option, but that she could freeze embryos. Without hesitation, her doctor asked if she had anyone in mind to use as a sperm donor. “I immediately burst into tears,” Gracie says. “I think that this was the day that made the situation very clear to me.”

Gracie considered in vitro fertilization (IVF), and her boyfriend was more than willing to use his sperm to help Gracie preserve her fertility in the case that her ovaries had to be removed. “It was surreal to be having this conversation at nineteen,” Gracie reflects. After careful thought, Gracie and her family decided that the cost of IVF was too great for a procedure that might not even be successful. “My biggest fear was waking up one morning as an infertile twenty-eight-year-old wanting a baby and wishing that we had done more.”

Fortunately, Gracie’s surgery was successful, and her surgeons were able to remove the tumors without removing her ovaries. The tumors were benign.

Though Gracie’s surgery went as well as hoped, the experience has affected the way she views her body, her fertility, and her future plans for motherhood. Gracie points to the uniqueness of an experience like hers saying, “As college girls, we work incredibly hard to ensure that we don’t get pregnant, thinking that it would be the worst thing to ever happen to us…I was faced with the opposite fear, that I would never be able to have a baby.”

The threat to her fertility that Gracie experienced has caused her to reexamine her priorities. “I think that you truly learn how precious something is when you almost lose it.” Gracie is grateful that her surgery did not affect her fertility, and she promises she will not squander her ability to have children. “During this experience I discovered that to me, life’s importance lies in having a family.”

Gracie’s battle with ovarian tumors has inspired her to remind other women to pay attention to women’s health and fertility research and to actively pursue maintaining their own health. “As young women, issues concerning fertility may seem a distant worry. However, I think that is incredibly important for young women to be both aware of the resources that are available to them and cued in to their own female health.”

The scientists and researchers within the Oncofertility Consortium spend a significant amount of time and effort studying the biological, psychological, and societal aspects of cancer and fertility. Many of the discoveries we make here have the capacity to transform clinical oncology care, reproductive health care practices, and change patient lives…but only if we are able to disseminate the results of this research. For that, we work with the many inspiring cancer advocacy groups around the  world. Fertile Action is one such group and it’s founder, Alice Crisci, may be one of the most enthusiastic members of this microcosmos, as we learned at the 2011 Oncofertility Consortium Conference. We recently sat down with Fertile Action for a quick Q & A, which we will post in a two part series. Enjoy!

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OC: When was Fertile Action founded?

FA: Alice Crisci debuted Fertile Action April 17, 2008, just four days before her double mastectomy when she was a 31-year-old breast cancer patient. Struck by the limited resources available for young women with cancer, and fueled by her personal experience funding her fertility preservation on her American Express card, Crisci vowed to protect the vision women have of their future as mothers when touched by cancer.

OC: What is your primary mission?

FA: Fertile Action helps women touched by cancer become mothers through education, advocacy and financial aid.

• We educate patients, survivors and caregivers on the fertility risk cancer treatment poses as well as the full spectrum of family planning options including fertility preservation, egg, embryo and egg donation, surrogacy, adoption, In vitro fertilization, and natural pregnancy.
• We advocate on behalf of patients and survivors to ensure they receive the most ethical and affordable family planning options possible from their physicians, agencies and insurance company.
• We reduce or eliminate cost as the barrier to becoming a parent through our financial aid program. We have a network of reproductive endocrinologists who donate their fertility services by 55%-100%. We even have a pro bono network of egg freezing specialists across seven states. We also offer egg donation grants and surrogacy grants to offset tens of thousands of dollars associated with third party reproductive technologies.

OC: What are the greatest barriers to fertility preservation for cancer patients?

FA: The greatest barriers to fertility preservation are lack of awareness, as well as exorbitant costs. Only 50% of U.S. oncologists discuss fertility risk or fertility preservation with their patients. The average cost of fertility preservation across the country is $12,000 and up to $20,000 in some markets, a cost insurance companies do not routinely cover.

OC: Do you have any upcoming educational events?

Yes! We are launching a national oncofertility tour in 2012, where we will conduct one-day conferences across the country for adolescent and young adult cancer survivors, their caregivers, oncology professionals, and fertility specialists. We will discuss all family planning options in an informal, comfortable setting as well as offer mini-consults for the survivor community with specialists, third party agencies, reproductive attorneys and more. We will also launch webinars in 2012 as well covering similar topics.

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Read the rest of our interview with Fertile Action tomorrow!

Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

We hope that all patients of reproductive age who are diagnosed with cancer have the opportunity to discuss oncofertility with their provider shortly after diagnosis. This conversation should include the options, risks, benefits and various outcomes of available fertility preservation techniques. Oncofertility decisions can have a big impact on a cancer patients life, both in the moment and as they move forward through treatment, recovery and remission.

One aspect of oncofertility decision-making that needs to be explored is the impact the actual conversation can have on a newly diagnosed cancer patient. This discussion may have a significant effect on patients who were previously ambivalent or not interested in having biological children.  What was not an issue in this individual’s life prior to their diagnosis may now become something with which they struggle.  It’s true that not everyone plans to have children and what you may feel in your mid-20s could certainly change as you age and your life circumstances change. Nonetheless, men and women often make a conscious decision not to have children.

Discussing fertility preservation may lead a cancer patient to struggle with a decision that was already made prior to their diagnosis because they feel it should be important to them.  A cancer patient’s journey is complex and although fertility preservation options provide so much hope and joy to some, it can be a mixed blessing for others.  According to Leonard Sender, MD in “Reading Between the Lines of Cancer and Fertility: A Providers Story,” “having children is no longer a default expectation of becoming an adult, or even of getting married.” Thus, a provider shouldn’t assume that just because a patient can have children, doesn’t necessarily mean they want to.

For a newly diagnosed cancer patient, all the decisions they make will have a big influence on their lives from the point of diagnosis onward.  It’s important for providers to consider that not all patients want fertility preservation and that these decisions may have been weighed and assessed long before the cancer diagnosis, not because the patient is focused on other aspects of their treatment. To read more about this, including a case study of a cancer patient who chose not to pursue fertility preservation, please read “Reading Between the Lines of Cancer and Fertility: A Providers Story,” by Leonard Sender, MD in Oncofertility: Ethical, Legal, Social and Medical Perspectives. 

Recently I dipped my foot into the real estate market and began looking for a place we could call home. I followed all the steps that most anyone else would: I hooked up with a real estate agent (*Todd), I began scouring all the listings in my price range and after a few visits to “the house”  I sent a text to Todd and said, “I’m ready to make an offer.” Within an hour, he was at my door and ready to draw up a contract.

We sat down at the table and began to fill out the contract making idle chit chat along the way. He asked me what I did for a living and it dawned on me that over all this time, I had never shared my occupation with him.  It seemed kind of strange that this was the first time it had ever come up. “I work at the Oncofertility Consortium at Northwestern University.” He gave me sort of a strange, but knowing look and I told him that oncofertility was essentially fertility preservation for young cancer patients.  Well little did I know that we had more than real estate to talk about…

Without going into the play by play of our entire conversation, I’ll give you the abbreviated version: Todd was diagnosed with testicular cancer at the age of 18, he underwent fertility preservation before he began treatment for his cancer, and now in his mid 30s, he and his wife have two children through ART with the help of our own Dr. Kazer at Northwestern Memorial Hospital.  Small world!

Todd shared with me the awkward moment when his oncologist at Elmhurst Hospital discussed fertility preservation with him shortly after diagnosis while he sat there next to his mother. “I would have said yes to anything she asked just as long as she stopped discussing this with me in front of my mother!”  Ultimately though, at 18 years of age, Todd made the decision on his own (albeit out of a sense of urgency to quickly move on to the next topic) to bank sperm and preserve his future fertility.

Luckily for Todd, he had known his wife since his cancer diagnosis so she knew right off the bat what it would take for them to have children someday, and she was onboard.  Fast forward 15 + years later and Todd has a three year old and a one year old that he never could have imagined at 18 would be so intrinsic in his life and in his marriage.  “I’m so glad I did that, that someone talked to me about it and gave me options because you’re not thinking about it in that moment.” Maybe Todd wasn’t, but thankfully for him, someone else was.

Pulitzer Prize winning photographer and cancer survivor, John Kaplan documents his journey through diagnosis, treatment and remission in the new documentary, NOT As I Pictured. At 48 years old, John was at the top of his game; successful career, wife and 2 kids (a boy and a girl), and rarely sick. When his belly button took on an odd shape, he went to the doctor for a hernia check.  During a routine CAT scan, doctors found a large tumor hanging off the side of his kidney.  It was cancer. Don’t be alarmed!  All we have to do is surgically remove the tumor and you’re on your way to good health again. Unfortunately this is not how his story unfolded…

During surgery, John’s doctors discovered that his tumor was actually a result of a much larger issue. This would not be as simple as removing the tumor and recouping at home with some soup and tender loving care. He had blood cancer – non-Hodgkin’s, aggressive and insolent – difficult to treat, prognosis not good.  He would need aggressive chemotherapy. He had a long road ahead of him.

So begins John’s journey through hair loss, ports, day-long sessions of chemotherapy, fatigue and ultimately, remission. We see him interact with his family and watch how he navigates this profound, life-changing event with his children – too young to understand the magnitude of cancer, but nonetheless apart of his treatment. Throw in Mother Theresa, a firefighter, and a rock star from Pantera and you’ve got a strange mix of bed fellows helping John along the way.

Watching this documentary, we get an insider’s glance into what it’s like to face a seemingly insurmountable cancer diagnosis and how John does it with bravery, hope and determination. John’s story is meant to inspire others struggling with cancer, to focus on the moments in life that are good, and sacred and hopeful. You can catch his documentary, NOT As I Pictured, beginning in late August on your local PBS station. John is also giving away 10,000 free copies of his documentary,  NOT As I Pictured, to anyone touched by cancer. Go to www.NotAsIPictured.org for more information.

A few weeks ago, at the American Society of Clinical Oncology (ASCO) conference, I walked over to the Bright Pink organization’s booth to introduce myself. In doing so, I met a young woman manning the station as a volunteer for the organization and we hit it off immediately, sharing stories about our kids and families. As the conversation gravitated back toward our respective organizations, she told me that her sister, Kristin Nelson, had undergone fertility preservation prior to having an oophorectomy. She gave me Kristin’s information and told me to contact her to learn more about her experience and possibly help others through her story.

Immediately upon getting in touch with Kristin, she was very open about her experience and the impact it’s had on her life 3 years later. At 34 years old, Kristin tested positive for the BRCA1 gene, making her significantly more susceptible to breast and/or ovarian cancer than someone without the gene . Her parents urged her to get tested for the gene after 3 out of 4 of her paternal aunts were diagnosed with either breast or ovarian cancer, one testing positive for BRCA1 as well as her father.  “I was shocked when I found out I had the gene. I was 34 years old, single, I didn’t know where to turn. I always thought about my fertility and wanted to have children so the thought of having to get rid of my ovaries was devastating.”

On the advice of a Clinical Psychologist specializing in medical decision-making, Kristin began looking into fertility preservation. After several mammograms, MRI’s and biopsy that proved to be negative, she knew she had to be proactive in order to save both her life and her fertility. She met with a fertility specialist and decided to bank both eggs and embryos before undergoing an oophorectomy. She also donated ovarian tissue from both of her ovaries to the Oncofertility Consortium in 2008 for research. A month later, she had a double mastectomy (removal of both breasts) and began showing symptoms of menopause.

Now at 38, Kristin has become the “go-to-girl” at Bright Pink when young women need to have their ovaries removed and are struggling with the repercussions of that. “I have never felt an ounce of regret because I took control of the situation.” This is the message that Kristin tries to convey to the women she speaks with – to be proactive and take control of your health and your fertility. To learn more about the Bright Pink organization or about your fertility options via information contributed by the Oncofertility Consortium, please visit www.bebrightpink.org.

On June 5^th, the 18^th Annual Cancer Survivors Celebration & Walk is taking place in Chicago, IL, at Grant Park. This leisurely, non-competitive 4 mile walk is a family-focused, community awareness event dedicated to bringing together cancer survivors, friends and family, and all those who have been touched by cancer.  It’s an event to honor cancer survivors with food, entertainment, and an opportunity to sign the Dedication Wall – a 25ft x 50ft white wall with markers at the base of it allowing people to write messages to the cancer community (a message to loved ones lost, encouragement to participants in the walk, thanks to a doctor who has helped them, etc…).

Jennifer Bowker, Manager of Communications at the Lurie Comprehensive Cancer Center, and one of the organizer’s for this year’s Walk, spoke with me in detail about the upcoming event. “We hold the walk in conjunction with National Cancer Survivor’s Day and the definition of a ‘cancer survivor’ is from the moment of diagnosis, through the rest of your life, you’re a cancer survivor.” Ms. Bowker said that this is her favorite event because it brings people in the cancer community together and embodies a spirit of positivity and camaraderie. It’s also the largest event of its kind nationally, with 4,000 people expected to participate.

As participants progress along the walk route, they will pass a series of posters called The Faces of Cancer.  Each poster houses a picture of a cancer survivor and a brief quote from them.  It inspires those walking and encourages others in their fight against the disease. One of those Faces taking part this year is Jenna Benn.  She is a 29 year old Gray Zone Lymphoma survivor, who preserved her fertility prior to beginning her cancer treatment.  She is currently undergoing her 6th and final round of chemotherapy and is looking forward to participating in the Walk on June 5th. You can see a touching video about Jenna’s experience as a cancer survivor here or visit her blog, Kill it in the Butt! and read about how she made the decision to bank her eggs before starting chemotherapy.

The 18th Annual Cancer Survivor’s Celebration & Walk is a time to celebrate cancer survivors. It’s a time to honor those who are currently fighting the disease, those who are in remission and those we have lost to cancer. To register or for more information, visit the 18th Annual Cancer Survivor’s Celebration & Walk. This is not a fundraising event nor are participants required to walk the entire 4 mile course.  If you register for the walk online by June 3rd, it only costs $15, but there is registration on the day of the event costing $25.  Please come out and show your support for this amazing event!

When Gina Shaw was undergoing cancer treatment, she tried to find a book that could clearly and simply provide her with information about having children after cancer. Shaw, who started chemotherapy on her 37^th birthday and did not have any children at the time, could not find any such resource.  As a freelance writer, Shaw decided to write her own book to discuss the family-building options that cancer patients have before, during, and after completing treatment. She talked with the Oncofertility Consortium about the making of her book, which was published last week.

The book, Having Children After Cancer: How to Make Informed Choices Before and After Treatment and Build the Family of Your Dreams, discusses many of the fertility issues involved in cancer treatment. In it, Shaw talks about how different treatments can affect the fertility of men, women, and children in addition to laying out the different methods for fertility preservation. The book also provides information to cancer survivors who are interested in learning about options if their fertility has been compromised by cancer or its treatment. Finally, as any other expectant parents, cancer survivors often wonder how the physical and genetic aspects of their cancer can affect their children. In her book Shaw answers these questions and discusses the emotional issues of parenthood after cancer.

Gina Shaw guides cancer patients and survivors through the book by providing the personal stories of about two-dozen survivors.  Shaw stated that she, “interviewed patients about what it felt like to undergo embryo banking, chemotherapy, and more.” She also talked with women who had received radiation for breast cancer and described their experiences breast-feeding, as radiation can impair later lactation on that breast.

In addition to talking with patients, Shaw also interviewed medical experts in the reproductive, oncology, and oncofertility fields. She said, “The members of the Oncofertility Consortium were really helpful and played a key role in the fertility preservation, financing, and insurance sections of the book.”

In discussing fertility preservation, Shaw stated that about half of the survivors she met with were not informed of their fertility preservation options and that, “Some people who were informed received that information in a very cursory way.” In addition, she described that survivors who received cancer treatment, “ in a small community-based oncology setting may be less likely to receive fertility information,” than those in large centers. With the publication of Shaw’s new book and the continued work of the Oncofertility Consortium, hopefully all young cancer patients will receive fertility information at the time of cancer diagnosis.

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.