Category » Oncofertility

Examining Cancer, Fertility, Sexuality, and Gender – A Study

By Maya M. Harper, M.A.

Every year, 70,000 adolescents and young adults (AYAs) between the ages of 15-40 are diagnosed with cancer. They may experience this diagnosis as a devastating twist of fate that has the potential for derailing their life from its current track. However, with the changes in the oncology field, cancer has become something that is survivable. People can and do have full lives after cancer.

The cancer treatments that can save a person’s life are not without risks. One of these risks is loss or impairment of fertility. There are proactive measures, such as sperm banking and embryo freezing, that a person can take if they have time before treatment. However, they may not find out about these services until it is too late. Even if they are presented with options, they must make decisions when they are already overwhelmed with making decisions about cancer treatment.

It is not uncommon nowadays for people to put off having children or even thinking about children until 30 or later. A cancer diagnosis means that a young adult may have this decision thrust upon them without warning. They may not have a partner. Kids may be the furthest thing from their minds. They have to make the decision not only of whether they want children, but also whether they are willing to have a child with the intervention of medical technology. Heterosexual people, in particular, may have always assumed that they could have children “naturally” someday. They may have much to consider. Fertility issues can also impact the romantic relationships of young adults who have been diagnosed with cancer.

Our new study – An Examination of Cancer Related Fertility Concerns– seeks to find out how people learn about and feel about fertility implications of cancer and cancer treatment. We would also like to find out whether there are differences in the ways that people of various sexual orientations and genders experience these implications. Heterosexual people and LGBT (lesbian, gay, bisexual, and transgender) people may tend to have different views of biological reproduction even prior to a cancer diagnosis.

Therefore, we are recruiting people who were diagnosed with cancer as young adults. We’d like to talk with them about their experiences for 45 minutes to an hour. I am excited to begin this study, because it is something that is truly novel. We are looking at oncofertility through a different lens than has been done before.  We may find interesting and useful results about the roles of sexual orientation and gender with respect to oncofertility. If you are interested in the study, please contact Maya Harper at maya-harper@northwestern.edu

Bright Pink and the Oncofertility Consortium Partner Up for Fertility Preservation

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 15th 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!

Fertility Preservation Goes Italian!

At the Oncofertility Consortium, we are always trying to make sure that we have the most up-to-date and accessible information regarding fertility preservation, particularly for patients. Whether we are partnering with advocacy groups to let patients know about support services available to them or we are sharing the latest research being done in fertility preservation, we want to make sure that we reach as many people as we can. One way that we work to do this is by making sure fertility preservation information shared on our partner websites is accessible to non-English speakers.

Currently, both of our sister sites, www.SaveMyFertility.org and www.MyOncofertility.org, have Spanish translations. Spanish seemed like the logical next step to creating a larger readership and expanding our reach within the oncofertility and patient community. Now we’re on to phase 2: Italian via Dormant Buds Association and website!!

Dormant Buds is an association founded based on the ideas of a gynecologist who works at a public hospital and specializes in fertility.  After contact with dozens of patients who, because of aggressive therapies, lost their ability to have children, the doctor, along with the help of a group of volunteers, designed a reference website, www.gemmedormienti.it. In the Section “Domande,” are Italian translations of the MyOncofertility.org animations. Take a look at this new website to see the latest translation!

 

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!

 

Playboy, Cancer, and Fertility Preservation: Which One of These is Not Like the Other?

At the Oncofertility Consortium, it’s no secret that we believe in the importance of fertility preservation for young cancer patients – it’s what we’re all about. Research, education, advocacy, clinical care, you name it, we’re on top of it and constantly looking for ways we can improve the fertility outcomes of cancer patients. There is a lot that goes into this kind of work, and we receive a tremendous amount of support from the greater cancer community, individuals, academic institutions, clinicians, etc… In other words, it takes a village, and one of those villagers just so happens to be Playboy, Inc. Let me explain…

Men hoping to preserve their fertility before undergoing treatment for cancer or another fertility-threatening disease can cryopreserve, or freeze, their sperm. This is the most established fertility preservation method for males and samples are obtained in what is called a “male production room.” Before going into the room, the men are supplied with a “visual tool” to help facilitate this process and in general, a Playboy magazine is what they get.

Due to the fact that many of our male cancer patients are immuno-compromised, meaning that their immune systems are in a fragile state, they need to be provided with a visual tool that is unopened and still wrapped in plastic. This ensures that their health is not compromised in any way.  Hey, it’s giggle-inducing I know (I’m smiling as I type this post up), but it’s still a link in the chain – a part you may not give much thought to.

Which leads me to this – a big thank you to Playboy, Inc for generously donating a years worth of magazines to the Oncofertility Consortium for our male cancer patients undergoing fertility preservation! Not only are they helping out our patients, but they’re also demonstrating their belief in the importance of oncofertility by choosing to support us among the numerous opportunities they have to donate to non-profit organizations. Sometimes, it’s the little things that count the most!

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!

Cancer Rights Conference Series: October 21st in Ann Arbor, MI

This past year, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for their Cancer Rights Conference series, which just wrapped up the second installment in the three-part series in Washington D.C. Now, believe it or not, the final installment of the conference series is fast approaching so if you haven’t participated yet, it’s time to get involved! Join us on October 21st, in Ann Arbor, MI, for this informative and free, one-day event. Our goal is to empower attendees to better advocate for themselves and share their knowledge with those who most need access to information and resources on cancer-related legal issues.

As always, CLRC will provide patients, survivors, caregivers, advocates, navigators, health care professionals, and attorneys with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics and the law, legislative advocacy, fertility preservation and education rights of children and young adults with cancer. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

FREE CLEs will be offered to eligible attorneys in attendance and CEUs will be offered to social workers and nurses. Please visit www.CancerRightsConference.org to register and/or for more information. The 2012 locations will be Los Angeles, Chicago, Houston, and Boston.  Dates and exact agendas have not been determined thus far, but you can visit CLRC’s website to register or find more information.

If for some reason you are unable to attend this conference, but need to speak with a legal professional regarding a cancer-related legal issue, CLRC provides a toll-free telephone assistance line (866-THE-CLRC). Callers can receive free and confidential information about relevant laws and resources for their particular situation.

October 2nd: The Lynn Sage Breast Cancer Town Hall Meeting

According to the American Cancer Society (ACS), a woman in the United States is diagnosed with breast cancer every three minutes. This breaks down to a 12 percent, or 1 in 8, lifetime risk for women of developing breast cancer in the U.S. and right now, there are about two and a half million breast cancer survivors. Chances are, those of you who are reading this blog have been affected by breast cancer either personally or indirectly, through family and/or friends who have been diagnosed.

For those of you with questions about breast cancer treatment options, family history, diagnosis and support services, the Lynn Sage Breast Cancer Town Hall Meeting will take place on Sunday, October 2nd at Northwestern University’s Chicago campus. It is an interactive discussion with Northwestern healthcare providers, providing you with an opportunity to have your questions answered by experts, learn about local and national support networks and meet with breast cancer advocacy groups.

Among the expert panel of healthcare providers will be our own, Kristin Smith, answering any questions you may have regarding fertility preservation and fertility options prior to and following cancer treatment. Joining Kristin will be a panel consisting of a cancer geneticist, radiation oncologist, survivorship and support expert, and a surgical oncologist. It’s a great venue to get more information and meet others, who may have gone through or are going through, a similar experience with breast cancer.

The town hall meeting is a free event and open to the public. There will be ample time provided for attendees to ask questions and get answers from our expert panel so come prepared with your most pressing concerns. For more information, including registration and directions, please visit www.cancer.northwestern.edu or call 312.695.1304. Walk-ins are always welcome so don’t let a little thing like registration hold you back! The most important thing is that you join us and get the answers and support you need.

Penn Med Student Perspective on Oncofertility

Last week, the 2011 Oncofertility Consortium Conference: Priorities for Sustainable Oncofertility Research and Patient Care, was held here in Chicago. One of the more than 150 attendees was a University of Pennsylvania medical school student, Katie Dillon, who works with Clarisa Gracia, MD, MSCE on oncofertility clinical research. She wrote an article for Making the Rounds, a blog from the Perelman School of Medicine at the University of Pennsylvania, which we are posting here.

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By Katie Dillon

A Trip to Chi-town for Science!

This past week I traveled to Chicago for the Oncofertility Consortium, an annual conference held at Northwestern to discuss advances in the field of fertility preservation for cancer patients. As mentioned in my previous post, I am currently taking a year out from medical school to conduct clinical research in infertility, my field of interest. Oncofertility is an area in which my mentor, Dr. Clarisa Gracia, specializes.

Dr. Christos Coutifaris, Katie Dillon, and Dr. Clarisa Gracia

The field looks at cancer treatments like chemotherapy and radiation that are toxic to the reproductive organs. For a long time these effects have been a medical afterthought, as the focus on survival after cancer diagnosis took precedent over other health concerns. But as improved cancer therapies result in better prognoses, it is necessary to consider the side effects associated with treatment. Specifically it is important to think about fertility preservation before cancer treatment begins so that patients may have options down the road for building families…Read more about Katie Dillon’s trip to the 2011 Oncofertility Consortium Conference.

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View a new documentary about the Oncofertility Consortium‘s first five years, A Roadmap for the Future: Inquiry, Discourse, and Innovation in the Oncofertility Consortium, which was first premiered at the Oncofertility Gala last Monday evening.

Upcoming Cancer Rights Conference: Washington DC

In June this past summer, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for a one-day conference event kicking off their 2011 Cancer Rights Conference series. It was a great success and provided many attendees with valuable information regarding cancer-related legal and financial issues. One attendee at the conference said: “This program was awesome. Everything presented was valuable information. As a cancer survivor it is comforting to know there is someone out there looking out for us. Thank you so much CLRC for all you do. You make a difference in our lives!”

On September 23rd, the 2nd CLRC Conference is being held in Washington DC and there is still time to sign up for this informative and FREE event. The conference will provide patients, survivors, caregivers, advocates, navigators, health care professionals, and attorneys with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics and the law, legislative advocacy, fertility preservation and education rights of children and young adults with cancer. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

FREE CLEs will be offered to eligible attorneys in attendance and CEUs will be offered to social workers and nurses. Please visit www.CancerRightsConference.org to register and/or for more information. The 2012 locations will be Los Angeles, Chicago, Houston, and Boston.  Dates and exact agendas have not been determined thus far, but you can visit CLRC’s website to register or find more information.

If for some reason you are unable to attend this conference, but need to speak with a legal professional regarding a cancer-related legal issue, CLRC provides a toll-free telephone assistance line (866-THE-CLRC). Callers can receive free and confidential information about relevant laws and resources for their particular situation.

Fertility Preservation and Motherhood

Motherhood has long been viewed as a valued role for women, regardless of whether or not every woman is a mother or plans on being one. In all fairness, it is a defining role for many women and something that gives their lives added meaning. I can certainly understand how this could be a principle role in one’s life – I feel as though motherhood, among other things, gives my life purpose and a completeness stemming from conceiving, carrying and raising a child.

Historically, women who did not have children were viewed as unfortunate (I am referring primarily to middle class, white women). Their primary role was in the home and children were a large part of “keeping a home.” Before women entered the paid workforce, their primary job was to have and care for children. As you can imagine, women who for whatever reason were unable to bear children, suffered socially and emotionally as a result of their infertility. The idea of being complete, of being a whole woman was challenged by their childless identity.

In a new article by Sarah Rodriguez, PhD and Lisa Campo-Engelstein, PhD, entitled, “Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004,” they explore the idea of wholeness experienced though organ transplantation, specifically ovarian tissue transplantation in infertile women.  Women began requesting medical interventions for infertility as early as the beginning of the 20th century suggesting the “cultural resonance of pregnancy and motherhood.”  As surgical interventions to correct infertility grew in popularity, infertility was no longer seen as a “personal misfortune… [but instead] a medically treatable condition.”

In their article, Rodriguez and Campo-Engelstein argue that ovarian tissue transplantation can serve, through the act of biological reproduction, to render women whole, meaning to conceive and carry a pregnancy naturally. By utilizing case studies that span over a century, they show that the idea of wholeness embodied in biological motherhood still permeates women’s identities thus, organ transplantation that restores fertility in women helps facilitate this idea of completeness.

To learn more about this and the history of ovarian transplantation, please read “Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004,” by Sarah Rodriguez and Lisa Campo-Engelstein. You can also find their research on fertility in, Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

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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