Cancer Connections 2012: Treatment for the Mind, Body & Spirit

In 2007, the Robert H. Lurie Comprehensive Cancer Center at Northwestern began a program called Cancer Connections. Cancer Connections was a monthly event held for individuals affected by a cancer diagnosis, to learn about services, meet advocacy groups and get the tools needed to manage the disease.  Now in it’s fifth year, Cancer Connections is debuting a new format, location and time to better serve the cancer community!

Cancer Connections will now be a held three times a year, with the first event on Saturday, March 24th at Prentice Women’s Hospital in Chicago. The new event format will provide ways for both survivors and caregivers to learn wellness strategies for the mind, body and spirit. Cancer Connections will introduce tools, techniques and services used to re-energize individuals living with a cancer diagnosis. What you can expect:

Learn simple strategies for eating healthier, move more, and manage the stress and sleep difficulties sometimes associated with cancer.

Connect with networking groups, peer support programs and other communities, including the Oncofertility Consortium, committed to ensuring no one fights cancer alone.

Renew the sense of well-being by sampling massage, acupuncture, guided imagery, healing touch and other integrative therapies

Cancer Connections will also have licensed massage therapists on hand and workshops/breakout sessions on topics including:

  • Simple Strategies for Physical Fitness
  • Introduction to Yoga
  • The Secret of Support
  • Caring for the Caregiver
  • Conversation about Hope
  • Guided Imagery / Meditation

For more details about Cancer Connections or to register for the March 24th event, please click here.

Social Media and Fertility Preservation

A few students from the Medill School of Journalism have recently been providing us with their thoughts on oncofertility. Zara Huasini gives us her second post here on the intersection of oncofertility and social media. Read her first blog, Increased Awareness Could Save Fertility of Cancer Patients.

____________

By Zara Husaini

If you enter a health concern into your Google search bar, I can almost guarantee that something will materialize.  Whether your query is expected (“do menstrual cramps hurt?”) or more outrageous, something will probably turn up.  For example: a few years ago I had a strange reaction to the piercing in my nose, and after a reading a particularly gruesome Yahoo! Answers thread, I was convinced that I’d wind up with a huge hole in my nose for the rest of my life.

It makes sense that people turn to the Internet about their most pressing concerns – it’s a safe way to gather information about things we’re not ready to discuss with anyone, not even a doctor.  The problem with this system is, misinformation abounds.

Northwestern University’s Oncofertility Consortium is doing its part to replace false information with real, verified medical fact.

“The Oncofertility Consortium only posts information that it believes is correct and authoritative. We work with the scientists and clinicians as needed to monitor and provide content for the oncofertility blog,” said program manager Angie Krausfeldt.

According to Krausfeldt, “Social media plays a significant role in breaking down barriers to communication and dispelling false or inadequate information.”

I think it’s important for medical experts to become more proactive in informing the public about about the health issues that they face. To me, the use of social media seems like the most current, effective way of doing this.

“I think that blogging and social media are a key outlet for keeping the public informed,” said Meredith Wise, a Northwestern University student.

Wise, who blogs for the Consortium, said: “it’s great that we have social media to use because in the past, most people got their health issue from their doctors or brochures they picked up when they had an appointment. We only go to the doctor every once in a while, so social media is a great way to reach people every day. I think Twitter is an especially great tool because everyone in the health community has lots of connections with each other there, and they can all help each other reach a broader audience and spread the word about health issues.”

If more medical professionals and organizations begin to spread accurate information via social media, it could diminish some of the anxiety that we experience when we just can’t make it to the doctor’s office and just can’t make sense of the symptoms that we’re experiencing.

The Oncofertility Consortium’s efforts should be commended and appreciated.  The staff is shedding light on an important issue that not everyone is aware of, encouraging discussion and clearing up some of the misinformation that exists all over the Internet.

Teresa K Woodruff, PhD: President Elect of the Endocrine Society

Please join us in congratulating Teresa Woodruff, PhD, Director of the Oncofertility Consortium and Thomas J. Watkins Professor of Obstetrics and Gynecology at the Feinberg School of Medicine at Northwestern University, on her election to the presidency of The Endocrine Society.  The Endocrine Society was founded in 1916 and is the premier organization whose mission is to advance scientific discovery, medical practice and human health in the field of endocrinology.  The society currently has more than 15,000 members, including clinicians and basic scientists, from all over the world.  Leading this organization is a very prestigious honor and a challenging job, but we know Dr. Woodruff is more than ready to take it on!

Dr. Woodruff continues Northwestern’s tradition of leadership in the field of endocrinology, and follows Neena Schwartz (1982-83), J. Larry Jameson (1999-2000), Andrea Dunaif (2005-06) and Kelly Mayo (2010-11) as Endocrine Society presidents from Northwestern University.

Congratulations Dr. Woodruff!

A champion for fertility preservation and quality of life after cancer

This is the second of a series of blogs that Medill journalism students are writing about their perspectives on oncofertility. Read the first blog by Zara Husaini.

_____________________

By Christi Sodano-

A pioneer in the world of fertility preservation for young cancer patients, Dr. Teresa Woodruff of Northwestern University’s Feinberg School of Medicine, coined the term oncofertility and champions the idea of looking beyond the lab bench to the cancer patients affected by the studies.

Her research in reproductive endocrinology has increased awareness of fertility management and the role it plays in quality of life for the increasing number of women who are also young cancer survivors.

Woodruff addresses the main concerns and issues facing the field and the patients it is built around.

Q. What is oncofertility and what exactly does that encompass?

A. Oncofertility is a term to describe a new area of work that is used to provide fertility options to young cancer patients. It involves all the dimensions of a patient’s decision process and provider’s information. It is the ethics, the law, the religious constraints, and the multi-dimensionality of fertility management in the case of a young (ages zero to 40) cancer patient.

Q. What advice do you have for cancer patients concerned with fertility preservation? Where should they start and how can they find specialists that will work with their own doctors?

A. I think one of the main things is that cancer patients should really ask their doctors about the threat of their treatments to their fertility, because not all treatments are going to result in sterilization. Getting that information upfront is really important.

If their doctors don’t know, they should consult with a fertility specialist. Our oncofertility hotline can give them information about fertility management and their local experts. They don’t have to come to Chicago. There are 60 sites around America and we have partners in Europe, China and throughout the world that support fertility management.

Q. What options are there for cancer patients who are concerned about preserving and managing their fertility?

A. If you were able to protect your gametes before, it depends on what you protected. You might have gone through IVF and frozen a mature egg. Those mature eggs and ones that are fertilized with a husband’s, boyfriend’s, or a donor’s sperm can be re-transplanted into the patient.

For those who didn’t have their gametes protected, live births have also occurred after re-introducing preserved tissue transplants. However, there is the potential to reintroduce the cancer they just survived so we are working on ways to grow the tissue in culture and produce mature eggs that can be fertilized.

I think it is now 17 live births resulting from tissue culture.

For patients who were not aware or did not have time to access these options then adoption is now an option for them.

Q. What is the most common misconception regarding cancer patients and oncofertility?…Read more from the interview with Teresa K. Woodruff, PhD.

The Gynecologist and the Fertility Preservation Continuum

A cancer diagnosis can be daunting to put it mildly, but add to that potentially sterilizing chemotherapy and radiation regimes and a young cancer patient faces a future of uncertainty in terms of their fertility. Fertility preservation is an option which should be discussed with both men and women, but it can be particularly challenging with young women due to the fact that it can be time intensive (not all cancer patients have the time to undergo IVF) and because mature gametes are difficult to access. A new article by Oncofertility Consortium members, Francesca E Duncan, PhD, Jennifer K Jozefik, BS, Alison M Kim, PhD, Jennifer Hirshfeld- Cytron, MD, and Teresa K Woodruff, PhD entitled, The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients, argues that gynecologists are in a unique position as primary care providers (PCP) for many young women, to provide cancer patients with fertility preservation options and information pre and post-cancer treatment.

The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients focuses on young women and serves to provide gynecologists with a general understanding of how cancer therapies can affect fertility, what fertility preservation options are available to adolescent girls and young women, and how to access reproductive function pre and post cancer.  For example, the authors discuss the most common forms of fertility preservation techniques including egg banking, embryo banking and ovarian tissue cryopreservation. Every cancer patient has different options based on unique intrinsic factors including diagnosis, treatment course, age, ovarian reserve prior to treatment or anit-mullerian hormone (AMH) levels, and timing. It’s also important to note that fertility preservation options are constantly expanding as research translates to clinical practice.

The authors state that gynecologists have an opportunity to be an essential part of the oncofertility team because they interact more regularly with their patients throughout their cancer treatment and beyond. As we know, oncofertility is a multidisciplinary field requiring a team-based approach. The authors assert that, “gynecologists need to educate their patients about oncofertility because despite measures to introduce oncofertility into oncology settings, patients frequently report that they are not provided with ample information concerning fertility preservation,” from their oncologists. Therefore, the gynecologist acting as a PCP is in the most ideal role to communicate this important information.

To learn more about fertility-impairing cancer treatments, fertility preservation options, and the gynecologist’s role in oncofertility, click here to read, The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients.

Ovarian Tissue Induces Puberty After Stem-Cell Transplantation

We often discuss the many ways young people can preserve their fertility prior to undergoing medical procedures that may leave them sterile. One of these fertility preservation options, ovarian tissue cryopreservation, or freezing, has recently been reported in the Lancet medical journal, to also successfully be used to induce puberty in a 13 year old girl who had undergone a stem-cell transplant.

The authors of the study, Poirot, Abirached, Prades, Coussieu, Bernaudin, and Piver, report the case of a young girl with severe sickle-cell anemia. Sickle-cell anemia, or disease, is a recessive genetic disorder that causes the red blood cells to take on an abnormal “sickle” shape, which can cause reduced hemoglobin (carries oxygen to the bodily organs) and decreased blood flow. Sickle-cell disease can cause variety of symptoms including swelling of the digits, fever, chest pain, difficult breathing, and premature death.

In the case, a young girl’s sickle cell disease was so severe that she chose to undergo stem-cell transplantation. Prior to transplantation, patients may undergo total body irradiation or high levels of chemotherapy, which can often destroy their fertility, before the infusion of donor stem cells that may cure their disease. Before undergoing the irradiation, the 10-year old girl had one of her ovaries removed through a laparoscopic procedure, dissected into 23 pieces, and then frozen.

Three years later, at age 13, the girl returned to her clinicians with a problem. She had not yet shown evidence of entering puberty. The doctors then reimplanted 3 thawed pieces of her ovarian tissue in an attempt to induce puberty. Within two months, she started to develop breasts and pubic hair, and eight months after the graft, the girl had her first period. This is the first published report of ovarian tissue reimplantation for the express purpose of inducing puberty.

It is important to note a few things in this case. First of all, the clinicians in the case implanted the ovarian tissue in the abdomen, not in the normal location of the ovary, as the purpose was to induce puberty, not pregnancy. Secondly, though the procedure was a success, the girl’s menstrual cycles continued normally only for about two years and became irregular afterward. Thus, if she wishes to become pregnant later in life she may need to reimplant some of her remaining  ovarian tissue. Further effort by oncofertility researchers will be needed to 1) determine if ovarian tissue can reliably induce puberty in girls, 2) understand how ovarian tissue can be used to grow ovarian follicles in vitro, and 3) develop stem cell and cancer treatments that do not impact the hormonal health and reproductive potential of children.

2012 Chicago Oncofertility Saturday Academy at Northwestern University is Another Great Success!

By Nadia Johnson, Co-Director of the Oncofertility Saturday Academy

On Saturday, February 18th, 31 high school girls hailing from six different local Chicago high schools celebrated the culmination of the sixth annual Oncofertility Saturday Academy (OSA) with a family day and graduation event. OSA is the flagship academy of the Women’s Health Science Program, the award-winning science education program that aims to inspire high school girls from traditionally underrepresented backgrounds to pursue careers in science and medicine. OSA consists of a junior academy (JOSA) geared toward laboratory sciences, and a senior academy (SOSA) geared toward clinical sciences. Each academy includes weekly homework assignments, and three on-campus days filled with hands-on laboratory or clinical activities, workshops on such topics as sexual health and applying to medical school, and panel discussions with students or professionals in the field.

During family day, students demonstrate how much they have learned during the five-week program by presenting a capstone project, and rotating through stations that cover some of the academy topics with their families. For example, the SOSA students take their parents’ blood pressure (a skill they learned during the “Doctor for a Day” session) and the JOSA students show their parents how female fertility can be preserved through the use of follicle isolation and preservation in alginate beads (a technique pioneered by the Woodruff and Shea labs, that they learn about during the “Regulation of Ovarian Function” session).

Graduation follows family day, and is a chance for everyone – parents, siblings, and friends of the OSA students, and the over 100 OSA volunteers – to celebrate the accomplishments of the girls who were motivated and dedicated enough to complete homework assignments every week, and get up extra early on Saturdays to attend the on-campus all-day sessions. Each student gives a short speech before accepting her certificate and OSA patch. One student, a senior at Roberto Clemente High School, started her speech with: “I am very honored to be part of this program, this is the first year that it was opened to Chicago Public Schools [so] I am fortunate to be here.” Up until this year, the OSA program was only available to students from the Young Women’s Leadership Charter School. With the help of many teachers and advisors throughout the Chicago Public School system, the program leaders were able to offer the program to other qualified students this year; in addition to Clemente and Young Women’s, OSA student hailed from four other schools: Kenwood Academy, King College Prep, Lindblom Math and Science Academy, and Instituto Health and Science Career Academy.

Many other students commented on their favorite experiences during the academy in their graduation speeches. Several SOSA students remarked that using the da Vinci surgical robot, a $1.5 million system used for minimally invasive gynecologic procedures, during the “Oncofertility & Surgery” session, was their favorite part of OSA. Most of the students thanked their mentors – JOSA girls were partnered with scientist mentors and SOSA girls we paired with first year medical students. The girls were proud of what they had accomplished, and recounted their experiences during the program with a mixture of gratitude and amazement. One student, a senior at Young Women’s Leadership Charter School, concluded her graduation speech with a quote from author Sarah Caldwell: “Learn everything you can, anytime you can, from anyone you can – There will always come a time in your life, when you will be grateful that you did.”

It may appear that the OSA program is designed to teach high school girls about cancer, reproductive biology, and oncofertility, but the program strives to teach so much more than that. It is a program designed to empower young women with knowledge about their own bodies; a program with over 100 university staff, student, and faculty volunteers, who serve as role models and mentors during the program; a program looking to change the face of science and medicine. OSA is a program that takes young women who are willing to learn, and hopes to turn them into the scientists, physicians and leaders of tomorrow.

 

Oregon Science Academy Graduates with Honors in Fertility Preservation

It’s only March and two of the Oncofertility Saturday Academies (OSA) have already completed their graduation ceremonies. With this newest class, the Oncofertility Saturday Academies have educated more than 240 students across the US. Last weekend, Mary Zelinski, PhD, who heads one of the Oncofertility Consortium‘s research projects, wrapped up this year’s Oregon academy at the Oregon Primate Research Center (ONPRC). Here’s what she had to say:

———————————————————————————————————-

By Mary Zelinski, PhD

The Oncofertility Saturday Academy held at the Oregon National Primate Research Center and Oregon Health & Science University graduated on February 25, 2012.  The students celebrated their accomplishments by sharing outstanding posters, delicious pizza and interesting views on some ethical issues involving this rapidly evolving field.  Ten high school students from the Portland metropolitan area met for six consecutive Saturdays to learn about the field of Oncofertility through hands-on labs and lectures.  This year, we even had the sister of one the students in our first ‘official’ Oregon OSA graduating class!

On our first day of class, each student was assigned a cancer patient needing information and guidance about their fertility, and by the final class, the students shared their recommendations for fertility preservation options specific to their individual patient. Another highlight of the graduating class was a morning of very moving presentations by young cancer patients, both of whom had been recently diagnosed, and their quest to preserve their fertility.  This really put the entire content of the class into a real-life context for the students.

The Oregon OSA was again a big success, thanks to the efforts of Diana Gordon, Director of Education Outreach at ONPRC, Mary Zelinski, Associate Scientist at ONPRC and class instructor, Lynda Jones, Oregon OSA Curriculum Development Coordinator, and Dr. David Lee, Department of Obstetrics & Gynecology, OHSU.  Here are some student comments:

“We were trusted to do real experiments and really got to dig deeper into current research about oncofertility.”

“I really enjoyed being able to participate in hands-on experiments and explore a field that is relatively new in science.”

“I loved talking to Dr. Lee and the cancer patients, and I loved ultrasounding the monkey.  I would make there be an Oncofertilty II class that I could take!”

“The hands-on labs and interactive parts (like the suture lab…) were FANTASTIC!”

“I liked the size of the class, the opportunities given by the instructor were unique, and I absolutely loved all the activities we did in class.”

“So much fun, amazing instructors!”

We will look forward to continuing Oregon OSA for as long as we can.  Our future efforts are aimed at polishing our curriculum that is using Oncology/Cancer as well as Oncofertility as major themes, training area high school teachers in using this curriculum, and basically disseminating these classes and labs (including those in NUBIO) throughout the Portland area.

Congratulations to all current and future OSA alumni !

 

 

Increased awareness could save fertility of cancer patients

The Oncofertility Consortium recently hosted a group of masters students from the Medill School of Journalism at Northwestern University. Over the next few weeks, they will be contributing their perspectives to the Oncofertility Blog. Here is one of their stories.

_________________

By Zara Husaini-

When Matthew Zachary was diagnosed with brain cancer 16 years ago, he was not made aware of all the possible repercussions of the disease. “My fertility wasn’t even considered back then,” he said.

Zachary, the founder and CEO of I’m Too Young For This, a New York foundation for young cancer patients, said that cancer should never deprive someone of the right to have a family.

“When anyone gets diagnosed they want to take care of it right away,” Zachary said, explaining that patients don’t always have time to seek out information regarding oncofertility. There’s a very small window of opportunity. The psychology of shock puts you in survival mode – you don’t think of anything except I don’t want to die.”

Zachary, who was diagnosed as a college senior, is the father of twins who were conceived by in vitro fertilization. His cancer had affected his fertility.

Oncofertility is a field that provides fertility options to cancer patients. The field is made up of cancer and fertility experts. Options for patients include egg banking, embryo banking, ovarian tissue banking and ovarian transportation and shielding…Read more about Zara’s perspective on oncofertility.

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.

 

Page 20 of 55« First...10...1819202122...304050...Last »
 
© Oncofertility Consortium Blog