A recent story on the Today Show sparked my interest and practically begged for me to write about it. It involved cancer, fertility, and surrogacy so it seemed right up our alley, but there’s a caveat I should disclose before you read any further – the mother of the mother-to-be was carrying her daughter’s child. Are you following me so far? Keep reading…

Chicagoan Emily Jordan was diagnosed with cervical cancer when she was 30 years old, leaving both her and her husband Mike, certain that children would not be in their future. Even more devastating news would follow – when she went into surgery to have her uterus removed, doctors informed her that she was actually pregnant. Although doctors could not save the fetus, they assured Emily that they would try and save her ovaries so she could still produce eggs.

After Emily’s surgery, she and Mike underwent invitro fertilization (IVF), but because she no longer had a uterus, they needed a surrogate to carry their embryo. At the time, her 52 year old mother Cindy, was anxious for a grandchild and heartbroken for her daughter because she couldn’t carry her own child. Cindy offered to be her daughter’s surrogate.  Emily and Mike initially dismissed her proposal thinking it was not a realistic option. After broaching the subject with Emily’s OB/GYN, she found out that her mother was exceptionally healthy, and actually a good surrogate candidate, so Emily and Mike made the joint decision to have Cindy carry their child.

According to Emily, “This is just a continuation of everything she has done for me her entire life, which is to make sure that I have the best life possible. This just reaffirms everything I know about her and love about her.” Just days after Emily turned 32, baby Elle Cynthia Jordan was born via C-section.  Even though the procedure required hormone shots for several months, Cindy said she would do it again: “When I watch both of them hold that baby and look into her face, it’s like everything I could have imagined wanting for them, better than I could have imagined.
This is what it was all about for me.”

To see the full story on Today, click here. To learn more about fertility options for cancer patients, including surrogacy, please click here.

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!

Earlier this year, I blogged about a young woman and volunteer with Bright Pink, Kristin Nelson, who had preventative ovarian removal after she tested positive for BRCA1. BRCA1 and BRCA2 genes are a class of genes otherwise known as tumor suppressors, and a mutation of these genes has been linked to a significantly increased risk for the development of breast and ovarian cancer at an early age. Kristin had enough of a family history of breast and ovarian cancer to want to take measures to protect herself, should she develop cancer as well. Knowing this would impact her fertility, she decided to bank eggs and embryos prior to her oophorectomy.

Luckily, Kristin knew enough about her fertility risks with BRCA1 to pursue fertility preservation prior to her surgery, but not everyone has the same experience. In an attempt to raise awareness and education about fertility preservation in high-risk young women, Bright Pink has partnered up with the Oncofertility Consortium to present, Fertility Preservation for High-Risk Young Women National Teleconference on November 15^th at 8:00EST. The teleconference seeks to help high-risk young women understand the basics of fertility concerns, their options for fertility perseveration and parenthood, and provide valuable resources that are available. Leading the information session will be Oncofertility Consortium Director, Teresa K Woodruff, along with Kristin Nelson and Melissa Synder from Bright Pink. To learn more about how you can participate in this teleconference or to register, please visit www.bebrightpink.org.

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!

It’s not uncommon for people to gift others with money on a birthday, or a graduation, at a wedding, etc.., but what about when people really need it? What about when people are in times of personal crisis?  Statistics show that 60% of all bankruptcies are a result of medical costs with most people unable to pay for emergency medical care even with the help of insurance. GiveForward, a fundraising website, was created to help individuals cope with a medical emergency with the financial and emotional support of family and friends.

GiveForward is a fundraising website which allows it’s users to create secure, fundraising webpages to raise money for emergency situations. The majority of fundraising pages are created to cover medical costs with 60% of beneficiaries fighting cancer. According to Ariana Vargas, Development Associate with GiveForward, the organization seeks to empower the friends and family of a loved one going through an illness to provide both emotional and financial support through a fundraising webpage. “It can be hard to know what to do or say when a loved one faces a medical emergency. GiveForward wants to help answer the question, ‘what can I do?’”

GiveForward provides support in addition to the fundraising tool available on the website to make the financial impact for the beneficiary more effective. Personal fundraising coaches are assigned to each individual in order to make the process as easy as possible considering all the stress the beneficiary is already under. Fundraising coaches help beneficiaries in a number of ways including, providing them with email templates to send out to family and friends when asking for donations as well as checking up with them throughout the process to give them tips and guidance for reaching their fundraising goals.

Several cancer patients have used GiveForward to raise money for fertility preservation procedures and Ariana is one of the members at GiveForward who helps them raise the funds they need in the short timeframe they have. She states that many cancer patients needing fertility preservation have discussed this with close family and friends so asking a family member to kick off the fundraiser with a substantial amount, really can set the tone for high donations. Like anything else though, “what you put into it is what you’ll get out of it,” so if you spend the time to personalize your fundraiser to those you are asking to contribute, you’re more likely to reach your goal.

This Sunday, August 7^th, you can find the GiveForward fundraising team at the Susan G. Komen Breast Cancer Walk finish line at Soldier Field in Chicago, IL. They’ll be wearing gray t-shirts with a pink elephant encouraging people to start talking about the elephant in the room and erase the stigma behind asking for help. For more information or to see examples of fundraisers, including those for fertility preservation procedures, please visit www.GiveForward.com.

Planning a family post-cancer can be a complicated process if a patient’s fertility was compromised during their cancer treatment. Depending on a cancer survivor’s prior treatment regime and subsequent fertility options, a number of family planning options may be available to them.  I spoke with Angela Lawson, PhD, a Psychologist at Northwestern Memorial Hospital in the department of Reproductive Endocrinology to learn more about what reproductive options are available to cancer patients who have been left infertile as a result of their cancer or cancer treatment.

One option for women who have banked eggs prior to cancer treatment or whose ovaries are still intact, but do not have a functioning uterus, is to use a gestational carrier. A gestational carrier or surrogate is implanted with an embryo, to which she may or may not have a genetic relationship with, and then carries the fetus to term. Once the baby is born, he/she is then legally placed with the intended parents where they then sign their names on his/her birth certificate.

Individuals can either go through an agency to find a gestational carrier or they can choose someone they know, possibly a friend or family member. Going through an agency can cost upwards of $100,000 with costs to the carrier, the agency, insurance and IVF to stimulate egg production. Going with someone you know is less costly and often makes people more comfortable knowing they have a personal relationship with the carrier that precedes the surrogacy. Personal relationships can lead to more emotional implications – the surrogate should feel comfortable giving the child to the intended parents knowing they will remain in the periphery of his/her life. Check out our blog, Delivering Hope, to learn more about one family’s incredible experience with surrogacy.

An option available to women who do not have the use of their own eggs, but can carry a fetus, is egg donation, whereby the cancer survivor follows a similar selection process as they would if they used a gestational carrier. Often, the medical community prefers the recipient use an anonymous donor rather than use donor eggs from someone they have a personal relationship with. This prevents complications that can arise in the event that the egg donor experiences any complications later in life which may impact her fertility before she has the opportunity to parent a child. If using an agency, egg donation is currently entirely anonymous.

All potential gestational carriers and egg donors go through a rigorous medical and psychological screening to ensure that they are being honest about themselves, to ensure they are stable and that they are not at risk for emotional vulnerability which can pose problems once the child is born. According to Dr. Lawson, about 50-75% of surrogacy and egg donor arrangements make it through the screening and move forward with the process.

If egg donation and surrogacy are off the table, adoption is always a great option too.  Having a history of cancer can make the process a little more challenging as not all agencies will adopt to cancer survivors. Sometimes either the agency or the birth parents are concerned about cancer recurrence and the subsequent repercussions to the adoptive child. Bearing this in mind, the Oncofertility Consortium compiled a list of cancer-friendly adoption agencies for survivors interested in navigating this option.

For more information on your reproductive options post-cancer, please contact our Fertility Preservation Patient Navigator, Kristin Smith, to learn more about resources in your area.

Planning to start a family can be an exciting and exhilarating time. Oftentimes people discuss issues along the lines of finances, space, school districts, career trajectory, etc… The logistics that will have an impact on whether or not you are ready for this next step and/or what you need to do to get ready. Once you’ve covered all the bases, then comes the fun part, “trying” for baby.  This is how we imagine it goes for most people, but of course it’s never that easy and in the case of a young cancer patient or cancer survivor, “trying” for baby can take on a whole new meaning.

Earlier this month, Gilda’s Club Chicago launched a new group to address the specific issues cancer patients and survivors face when thinking about starting a family. The group is called, “Starting a Family after Cancer,”  and it’s held the first Thursday of every month from 9:30-10:30am on the 5^th floor of Prentice Women’s Hospital in the Supportive Oncology Suite.  The group is facilitated by Rebecca Fritz, LCSW from Gilda’s Club Chicago and Kristin Smith, Fertility Preservation Patient Navigator for the Oncofertility Consortium.

According to Rebecca, the sessions will involve a 30 minute presentation on different topics each week, followed by 30 minutes of open discussion. “We encourage anyone who has an issue around oncofertility to come – young people interested in fertility preservation before beginning treatment, an adult survivor thinking about thawing out an embryo or an adult who wants to start a family and is interested in adoption…” The program was developed with a lot of flexibility to ensure that as their following grows, each individual’s needs and concerns can be addressed.  “Starting a Family after Cancer,” provides a place not only for discussion, but also to share experiences and receive support from the cancer community.

The group welcomes walk-ins, but encourages registration to make sure they have enough space and refreshments for all participants. Contact Kristin Smith at ksmith12@nmff.org if you would like to attend the next session on May 5^th. To learn more about this group or other groups offered by Gilda’s Club Chicago, please visit www.gildasclubchicago.org.

Preparing to parent after cancer treatment can be both an exciting and a terrifying journey depending on what your experience with cancer was and what your current parenting options are.  A recent podcast entitled “Adoption or Infertility Treatment after Cancer,” broadcast by Creating a Family, a nonprofit providing education and resources for infertility and adoption, tackled this issue with a panel of four experts, including Irene Su, M.D., MSCE, Assistant Professor of Reproductive Medicine at University of California in San Diego (UCSD) and member of the Oncofertility Consortium. The panel spoke in depth about issues surrounding pregnancy, adoption, infertility and recurrence.

One topic that particularly stuck out in my mind was the discussion as to whether or not attempting to become pregnant after treatment increased a cancer survivor’s chance of recurrence, specifically with hormone related cancers such as breast cancer.  According to Dr. Su, “most studies show that there is not an increased risk for recurrence; however, the majority of oncologists would suggest that a patient wait until they are out of the recurrence stage before attempting to get pregnant.” Beyond the clinical aspect of this issue, is the personal. The fear that many women have of recurrence if they were to get pregnant, regardless of what science suggests. After having been through such a traumatic and life changing experience, not every woman is emotionally prepared to invest in a pregnancy. Those that do make that decision should consult with both a high-risk obstetrician and a reproductive endocrinologist to insure that they are in the care of health professionals that understand the specific issues relevant to cancer survivors.

An alternative for cancer survivors interested in having children, but not wanting to attempt pregnancy or being left infertile as a result of treatment, is adoption.  Adoption can sometimes be a little more complicated for cancer survivors because not all adoption agencies allow cancer survivors to adopt for fear that the child will lose the adoptive parent to the disease or that the parenting experience will not be optimal due to the possibility of recurrence. Other adoption agencies have specific guidelines for how long an individual has to be cancer free before they are eligible to adopt. For example, in Korea there is a five year wait and in China, the waiting period is 10 years without recurrence before you are eligible to adopt. Many domestic adoption agencies have a shorter wait time, but ultimately it is determined on a case by case basis. In 2010, members of the Oncofertility Consortium performed an analysis of domestic and international adoption agencies as they pertained to cancer survivors and then compiled a list of cancer-friendly adoption agencies that survivors could refer to when researching their options.

As a result of the complicated dynamics involved with parenting post cancer, it’s important for newly diagnosed cancer patients to know their options in terms of fertility preservation before beginning treatment. According to Dr. Su, “there are no exact studies about infertility and cancer, just a strong idea about likelihood,” so it’s important to be well-informed about fertility preservation and your specific options. There are many different roads to parenthood, but the more informed you are, the better off you’ll be. To listen to this podcast, go to http://www.creatingafamily.org/radioshow.html.

Young cancer patients who choose fertility preservation in the midst of a cancer diagnosis reveal their belief in a future for themselves and in their body’s ability to create life even when faced with death. Oncofertility technologies offer possibilities to cancer patients asking them to contemplate creating life during a time when their own is in question.  This changes the road to parenthood in some ways, yet the overwhelming desire to create a future for oneself remains the same. Understanding this innate desire can help healthcare practitioners be more prepared to guide their patients in the decision-making process.

Even if a cancer patient chooses fertility preservation, there are no promises that they will later become parents so what drives the decision-making process if there are no guarantees? Some suggest that the hope for a future and new life embedded in the idea of fertility may negate many of the painful feelings associated with cancer. This idea of an “imagined” future allows the patient to confront their current diagnosis and the dire circumstances surrounding it with a renewed sense of hope and determination. Fertility preservation can become a coping mechanism for cancer patients allowing them to see a life post-cancer.

Although some may argue that it is irresponsible to pursue fertility preservation if you are not prepared to be exceptional parent in that moment, choosing fertility preservation doesn’t necessarily mean that you are choosing to be a parent. It means you are choosing to have options. It means you are protecting your right to have a biological child when and if you decide that it is right for you. For adolescents, it may mean you are placing value on your future and your imagined self as an able and fit parent.  In studies, researchers have found that an individual’s capacity to aspire to a healthy and positive future is often linked to their current well-being.

In order to provide the best possible care for cancer patients seeking fertility preservation, the healthcare community needs to understand the decision-making mechanisms underlying those choices.  It may be the innate desire to have a child or it may be a method for creating future goals and setting the stage to achieve those goals. Either way, they need the proper support and guidance to navigate the intersection between life and death. To learn more about this topic, please read “Choosing Life When Facing Death: Understanding Fertility Preservation Decision-Making for Cancer Patients,” by Shauna L. Gardino, PhD and Linda L. Emanuel, PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Often when we think of assisted reproductive technology (ART) in the emerging field of oncofertility, we assume that this technology is available to all women of reproductive age following cancer treatment – that with some manipulation of eggs or embryos transferred back into a woman’s body, they have the potential to become pregnant. Unfortunately for some women, their cancer treatment leaves them unable to gestate for a number of reasons including: the effects of radiation on the uterus, the removal of the uterus (hysterectomy) or the potential negative effect of chemotherapy on hormone regulation.  In these situations, if a woman has banked her eggs or embryos she then has the option, the only option at this time, of using a surrogate to have a biological child.

Choosing surrogacy as a means of having a biological child necessitates a significant amount of research in order to fully understand the complicated legal, ethical and economic implications of an already emotional and personal decision.  Decisions need to be made about which type of surrogacy you will pursue – altruistic or commercial – will you be compensating someone or not? Does your state even allow you to compensate a surrogate and if not, what are your options in other states? In surrogacy, a lot of what you decide to do depends on your geographical location and the laws and practices of that particular region.

Commercial surrogacy can be costly omitting a large number of people from opting in which makes international surrogacy a more accessible option to individuals with financial limitations. When choosing international surrogacy you will have to establish how to navigate another country’s legal and/or governmental system. Some countries have very limited governmental regulations while others are highly restrictive so working with an experienced and knowledgeable surrogacy broker may help you to avoid potential legal complications.  A broker is there to protect your rights as the biological parents and to make sure that the surrogate chosen is prepared emotionally and physically to follow-through as contracted with the surrogacy agreement.

Regardless of the logistics of surrogacy, as we see an increase in cancer survivors through improved treatment plans, we will also see an increase in surrogacy arrangements. When discussing fertility preservation options with patients, it is the responsibility of the provider to also let the patient know about surrogacy in the event the cancer treatment leaves them unable to gestate. In order to make an informed decision about their fertility options, patients need to have all their possibilities laid out in front of them.  You can read more about this topic in “Domestic and International Surrogacy Laws: Implications for Cancer Survivors,” by Kiran Sreenivas, PhD and Lisa Campo-Engelstein, PhD, in  Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

We at the Oncofertility Consortium spend much of our time developing new techniques and options for young cancer patients who wish to preserve their fertility before undergoing cancer therapy. But what options are available to cancer survivors who did not undergo fertility-sparing treatments?

Cancer patients may not protect their reproductive potential before beginning cancer treatment for many reasons including an immediate need for care, unavailable options near a patient’s home, and young age at cancer diagnosis, among others. Once they successfully beat cancer and start thinking about the future, young people may begin to wonder about their reproductive options. Since tailored treatments are used to combat each distinct case of cancer, fertility is also differently affected in every case. Treatments that may affect fertility include surgery, radiation, and chemotherapy. Even the doses, locations, and combinations of these treatments may affect later reproductive ability. Finally, these variables can alter the fertility of individual cancer fighters in different ways.

Survivors who wonder about the impact of cancer treatment on their reproductive potential should talk with a physician or fertility counselor. Survivors with additional questions or need for referrals can contact the FERTline oncofertility patient navigators. Analysis of a man’s semen sample can determine if the number and mobility of sperm indicates diminished fertility. Women may have their ovaries, fallopian tubes, and uterus examined and their hormone levels measured. Though these tests may give an indication of fertility, there is no sure-fire way to determine person’s reproductive potential until he or she attempts to conceive a child.

Cancer survivors who find their fertility impaired may use one of the many options in assisted reproductive technology (ART) to have biological children. Men with reduced sperm count or mobility may undergo intrauterine insemination or intracytoplasmic sperm injection, which involves depositing sperm into the uterus or injected into an egg, respectively, to increase the chance of conceiving. Male or female cancer survivors can also fertilize their sperm or eggs through in vitro fertilization (IVF) to have a child.

Survivors who lose reproductive ability after cancer and its treatment can employ third party reproduction to have children. These include using donor sperm, eggs, or embryos to have a child. Women whose bodies are unable to support a pregnancy to term can also employ a surrogate, or gestational carrier, to carry the survivor’s biological children or with the use of donor gametes. Adoption is also an option that is becoming increasingly available to cancer survivors, in part, due to some of the research at the Oncofertility Consortium. Thus, cancer patients who did not undergo fertility preservation should not lose hope as they still have the ability to build a family.