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Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors

What does empowerment mean to you? Does it mean giving someone the authority or power to do something… because that’s what you’ll find if you look it up?  The word is not a new one – it originated around the 17th century and the meaning has remained largely the same. People have a need for a word that makes them feel that they are or are about to become more in control of their destinies, and this is especially true when faced with a cancer diagnosis at a young age. On Saturday, April 14th from 10:00AM-4:00PM, the Robert H. Lurie Comprehensive Cancer Center will be hosting an event entitled, Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors.

At this inaugural event, young adult and adolescent cancer survivors will learn strategies and information to help them embrace life after treatment with confidence. Get EmPOWERed is an opportunity for everyone under the age of 40 who has been treated for cancer, including childhood cancer survivors who are currently 13 years of age or older, to share experiences and receive support. Family members, friends and caregivers are encouraged to attend as well!

Get EmPOWERed will cover a lot of ground so there is something for everyone.  Topics that will be explored include: talking about cancer with important people in your life; coordinating follow-up medical care; managing stress and other cancer-related emotions; making good choices about exercise and nutrition; addressing insurance, financial, legal and other practical concerns; exploring options for building a family after cancer with fertility preservation patient navigator, Kristin Smith; managing pain and other effects of cancer; and helping caregivers to care for themselves.

The event is being held at the LaSalle Power Company in Chicago and there is a small registration fee for participants, which includes all the workshops and admission to a VIP after-party event at Gilda’s Club Chicago.  This is a great event for the young cancer community so if you that sounds like you or someone you know, please come out and take part in this great event! For more information on Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors, including registration, please click here.

Survivors: A New Magazine for Breast Cancer Survivors

As we have covered in past blogs,  young people account for about 10% of all cancer patients.  As science, research and advocacy evolve, more young people are SURVIVING cancer and going on to lead healthy and productive lives. Nonetheless, young cancer survivors are in a league of their own when it comes to survivorship issues, (i.e., late-term effects of cancer treatment, fertility, heart & brain health, etc…). In an effort to address and celebrate breast cancer survivorship, particularly in women diagnosed at a young age, a new quarterly magazine was born: Survivors: A Magazine for Inspiration, Hope, Healing and More.

In November 2011, the premier issue of Survivors: A Magazine for inspiration, Hope, Healing and More was published. According to the editors, the goal of the magazine is to “highlight positive and inspiring breast cancer survivor stories – about people who have turned their diagnosis and situation into possibilities and opportunities.” The most significant aspect of this new magazine lies not only in its mission, but also in its content – the magazine spotlights grass roots programs and organizations allowing them to get the kind of exposure they often deserve and need, but don’t often get.

Throughout the first issue are stories from women, many still in their reproductive years, who are involved with the Breast Cancer Awareness Body Painting Project (BCAPP). BCAPP is a form of art therapy for breast cancer survivor showcasing women of all different races and ethnicities with their chests/torso painted, aiming to demonstrate the beauty and inspiration in survivorship by presenting a positive body image of breast cancer survivors. If you have not already, you should definitely take a look at these profound and brave images of women who have been diagnosed with and survived, breast cancer.  If you need a little inspiration, you will be hard pressed not to find it here.

Their first issue of Survivors: A Magazine for Inspiration, Hope, Healing and More can be downloaded for free so take a look at it here and if you love it, they’ve already released their second issue for purchase.  If you’re interested in contributing breast cancer survivor stories or other related content, please send them an email at: survivors@inkspotdesigns.com.

 

John Green’s “Fault in Our Stars” and AYA Cancer in the Media

For all those young adult readers out there and even for those who are in no way eligible for that category anymore, John Green has just released his 4th fiction book, The Fault in Our Stars, starring two, young cancer stricken protagonists. Though the topic is a little grim, Green composes the novel into a surprisingly heartening story. Although fictitious, Green worked as a student chaplain in a children’s hospital several years ago and knows a thing or two about real-life young people living with or through cancer.

A little about the book: Hazel is sixteen-year-old girl living with terminal cancer and carting around an oxygen tank when she meets Augustus, another young cancer survivor who lost his leg during his bout with osteosarcoma, at her kids-with-cancer support group. The two are kindred spirits, sharing an irreverent sense of humor and wit, and end up falling in love in spite of Hazel’s prognosis. Green’s book reflects on the universal questions we can all relate to – How will I be remembered? Will my life, and my death, have meaning? What do I want to do with my life, now, in this moment?

Green recently sat down for a segment of Weekend Edition on National Public Radio (NPR) and discussed his book as well as his experience spending time with young cancer patients. Green talked about wanting to write a book that didn’t feature teenagers as “wide eyed” with the answers to life’s existential questions. He said, “The truth is that teenagers are teenagers, whether they’re sick or well. And whether they’re going to exit adolescence or not, they still have to go through this.” This in particular, makes Green’s book come off as authentic and true-to-life because cancer or not, kids still want to be kids and live in that moment, albeit those with a cancer diagnosis have a more pronounced understanding of their mortality.

Through the recent attention being paid to the adolescent and young adult (AYA) cancer community in the media via movies, (50/50), organizations (i2Y, SAMFund) and now Green’s latest book, The Fault in Our Stars, the public can get a better understanding of the specific needs of young people living with or after a cancer diagnosis (fertility, survivorship, psychosocial care). To read more about or to purchase a copy of The Fault in Our Stars, please click here.

Bonnie J. Addario Lung Cancer Foundation: Jog for Jill

Those of you in the cancer community may have heard the name Jill Costello before. We first learned about her through her best friend and cancer advocate, Darby Anderson, on an impromptu visit to the Oncofertility Consortium. Jill has been featured on ESPN, written about in Sports Illustrated, interviewed on NPR and she even has her own entry in Wikipedia. Jill was an athlete, a 4.0 student, and an activist among other things. She was an athlete by nature, and an activist by choice. At the age of 21, Jill was diagnosed with stage 4-lung cancer – a healthy and active young woman with no history of smoking or genetic pre-disposition to cancer.

There is no cancer that is better than another, but lung cancer often has discouraging statistics. Less than 2% of individuals diagnosed with lung cancer at stage 4 survive, and many associate lung cancer with smoking, assigning an unfair stigma for many diagnosed with the disease. As a result of this disease’s reputation (that it’s self-induced), and due to the low survival rate, it rarely attracts big research money. In the last 40 years, the survival rate has largely remained the same.

As a testament to who she was as a person, Jill was brave and positive throughout her yearlong battle with cancer. She remained active on the rowing team and successfully led her team to a Pac-10 victory as the coxswain for UC Berkeley’s women’s crew. She finished college with a 4.0 G.P.A. and spearheaded the first Jog for Jill, a 5k walk/run for the Bonnie J. Addario Lung Cancer Foundation on February 7, 2010 in Berkley, CA. Jog for Jill raised over $45,000 dollars and drew 1,000 participants making it the largest fundraiser ever for lung cancer at that time.

A little over one year after her initial diagnosis, Jill passed away leaving behind a legacy of activism and fundraising in an effort to, in Jill’s own words,  “Beat Lung Cancer Big Time!”  Beginning March 11, 2012, the Jog for Jill Walk/Run series kicks off in Berkeley, CA and will be touring the country to raise money for lung cancer research. The Bonnie J. Addario Lung Cancer Foundation will be hosting walk/runs in 17 different cities, so please visit the Jog for Jill webpage for details on how you can participate.

Cancer & Fertility Preservation: How I Lost My Uterus and Found My Voice

A newly released memoir from cancer survivor, Michelle Whitlock, delves into her experiences with HPV, cervical cancer, fertility preservation and love in a book that you will read from start to finish in one sitting. How I Lost My Uterus and Found My Voice is an honest and (very) candid account of what her 20s looked like, replete with all the things you might expect out of a 20 something: falling in love, travel, finding oneself, heartbreak, etc… Now throw in a whole lot of cancer, embryo banking, chemo, radiation, incontinence and a play by play of “getting your groove” back after your vagina has done a total 180 from what it once was, and you have a very unique story.

At the age of 26, Michelle found out that she had HPV, a sexually transmitted virus infecting 50-60% of sexually active people. Shortly after finding this out, she received the biggest blow of her life – she was diagnosed with invasive cervical cancer.   From that point forward, Michelle made it her mission to ensure her treatment plan was something that worked for her, meaning not only was she going to do everything in her power to beat the cancer, but she was also going to fight just as hard to preserve her fertility for her “maybe babies” one day. At a time when little information was offered regarding fertility preservation, Michelle had to take the reins into her own hands and become her best advocate. Unsure of whether or not she even wanted children, she was not going to let cancer take her options away.

After successfully beating cancer the first time around and avoiding a total hysterectomy by electing to undergo an experimental surgery to eradicate the disease, she was diagnosed with the same cancer just a few years later.  She was left with no other option except chemo, radiation and a total hysterectomy, but as a result of her research and commitment to finding the best care possible, she found a doctor who understood the importance of her fertility just as much as she did. Thus, her “maybe babies” came to fruition and were put on ice for a date… TBD.

I don’t want to giveaway any more of her story, but this is a must read for cancer patients, survivors, caregivers or anyone that wants to know what cancer, fertility issues, and sexuality really look like. I highly recommend it for its rawness and the openness with which she shares her experience. Nothing is sugar-coated in these pages – Michelle talks about things that will make you blush from time to time, but they’re the things no one talks about, and should be.  It’s an inspirational story that reads like a conversation with your girlfriends so if you haven’t already, please pick up a copy of How I Lost My Uterus and Found My Voice, by Michelle Whitlock, and see what I have been raving about!

Astrue v. Capato: The Supreme Court Covers Oncofertility

This March, the United States Supreme Court will hear oral arguments about its first case on oncofertility. The case involves the Capato couple, a husband and wife from Florida who dealt with Mr. Capato’s diagnosis of esophageal cancer.  Prior to beginning cancer treatment, the Capato’s learned that Mr. Capato’s chemotherapy could destroy his fertility and, as such, choose to preserve his fertility by banking sperm.  Despite the cancer treatment, Mr. Capato passed away from his disease. Mrs. Capato decided to continue their wishes as a couple and use Mr. Capato’s banked sperm to have their children through in vitro fertilization.

In 2003, 18 months after the death of her husband, Mrs. Capato gave birth to twins. As a widowed mother of twins, Mrs. Capato applied for Social Security survivors’ benefits. According to the Social Security Administration website, these benefits are intended to help the family of a worker who passes away and that 98 of every 100 children are eligible for benefits if a working parent dies.

However, Mrs. Capato’s application for her children to receive survivors’ benefits was denied. According to the Social Security Administration, the Capato twins are not actually Mr. Capato’s children since they were conceived after his death. This first decision was based, in part, on a Florida law that states that a child cannot receive inheritance from a parent who was dead at the time of conception. Mrs. Capato appealed this decision twice and was denied both times. Finally, the Third Circuit decided on the Capato twins’ behalf stating that the term “child” refers to the biological offspring of Mr. Capato, which they are.

The case that is going to the Supreme Court is called Astrue v. Capato as the Social Security Administration, is commissioned by Michael J. Astrue. Social Security Administration has a policy of denying survivor benefits when a child is conceived after a parent’s death and they are asking for guidance for the court on when to decide when these children should be beneficiaries.  We look forward to hearing more about this case in the next few months and will keep our readers updated. More insights into the legal aspects of oncofertility are available from some of the researchers at the Oncofertility Consortium:

Giuliana Rancic and Oncofertility

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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Fertility Preservation Decision-Making: A Young Woman’s Story

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.”

Fertile Action and Alice Crisci: Partners in Disseminating Oncofertility Research

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!

Fertility Preservation: Childless by Choice

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

 

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