Oncofertility at the Young Adult Alliance Conference

Last week, members of the Oncofertility Consortium flew to Austin, Texas to meet with the Young Adult Alliance. The Alliance is a coalition of more than 120 research, clinical education, and advocacy organizations around the country dedicated to making advances in cancer treatment for people aged 15 to 39.

Since the 1970s, survival rates doubled for the overall population of cancer fighters. In contrast, adolescent and young adult (AYA) cancer patients still have the same survival rates as in 1975. These rates may be due to delayed diagnosis, fewer clinical trials performed with young patients, and health insurance issues. The Young Adult Alliance facilitates new research for this important community and advocacy organizations can guide the agendas of these groups to solve problems involving fertility, careers, and education for young patients. Essentially, it does for the AYA community what the Oncofertility Consortium does for fertility.

I had the opportunity to attend this exciting event with the Oncofertility Consortium’s Patient Navigator, Kristin Smith. Many of the advocates at the event are, themselves, survivors of AYA cancer and really brought their enthusiasm to the meeting. The celebrity speaker for the event, Ethan Zohn, is no exception to that statement. Famous for his career as a professional soccer player, winner of the TV show Survivor: Africa, and beating Hodgkin’s Lymphoma, a short-haired Zohn pumped up the crowd before his weekend run at the New York City Marathon.

The event allowed us to meet up with old friends from Fertile Hope, I’m Too Young for This!, Bright Pink, Imerman Angels, Cancer Legal Resource Center, and Tamika & Friends. In addition, we met representatives from other research, education, and advocacy groups that we will highlight in the coming months.

Does Insurance Cover Breast Reconstruction?

As discussed in our blog last month, a Cancer Support Community (CSC) survey found that almost half of women with breast cancer did not receive information about breast reconstruction when reviewing treatment options. The outcome of this survey is shocking, especially given that due to the Women’s Health and Cancer Rights Act (WHCRA) of 1998, insurance companies must cover the costs of breast reconstruction surgery if they cover the costs of mastectomy. While many patients are not clear on the specifics of what their health insurance covers, it seems odd that providers would not be familiar with WHCRA, as it is a federal act and therefore applies to all health insurance organizations—public and private—in all states. Additionally, WHCRA deals with common and well established procedures (mastectomy and breast reconstruction), is available for patients with the most well-known and publicized type of cancer (breast cancer), and received significant media coverage during its passage.

Determining why providers are not discussing breast reconstruction with their patients is an important next step to ensuring that these conversations happen. If lack of knowledge is the main reason for the dearth of conversations, then perhaps the CSC, or some other organization, can create a new resource to inform providers. This provider resource could serve as a parallel of and/or work in conjunction with the CSC’s new national program, “Frankly Speaking about Cancer: Spotlight on Breast Reconstruction,” which offers comprehensive information about breast reconstruction as a way to empower patients.

Some providers may know about WHCRA but generally not mention breast reconstruction to their patients because they do not see it as part of their role (e.g. they are oncologists, not plastic surgeons; they are nurses, not physicians). These providers could benefit from the Oncofertility Consortium model of bringing together experts from a variety of disciplines in order to ensure patients receive the best and most complete cancer care.

The Emotional Side of Oncofertility

Third and final day of our visit with Kirsten the journalist. We really enjoyed her stay and hope she’ll come back soon!

—–

By Kirsten Tellam

Today was a more difficult day at the lab, not because of the work I was doing, but because of the topic.

I was in meetings with various people in the lab almost all day. I started out talking to Sarah Rodriguez, a post-doc historian who works in the lab . Sarah and I talked about the social and political factors that influence women’s health; she’s particularly interested in 20th century women’s sexual and reproductive health. We talked about how reproductive health is usually presented in extremes, with little gray area. She encouraged all of us, when we’re writing about health, to contact a historian for background information and a non-extremist position on controversial issues. It’s a source I never would have considered, but a great one!

Up next was Shauna Gardino, the lab’s clinical research coordinator. Shauna and I talked about six projects in the Oncofertility Consortium:

1. The ethical, religious, legal, moral, and historical perspectives on oncofertility.

2. A willingness to pay assessment.

3. A shared decision-making survey.

4. A study on breast cancer survivors and how they interact with physicians.

5. A study on adolescent quality of life after cancer.

6. A psychological adjustment/decision-making study.

I then went over to the Prentice Women’s Hospital to talk to Kristin Smith, the patient navigator for the Oncofertility Consortium. This was the hardest but most interesting part of the day. Kristin’s job is to talk to patients who have been diagnosed with cancer about their options for preserving their fertility. This usually must happen in a very short time frame, because once a patient undergoes chemotherapy/radiation treatment, she usually becomes infertile. Kristin and I talked about specific patient cases (and both cried a little bit). One technique for preserving a woman’s fertility for when she’s cancer-free is experimental ovarian tissue cryopreservation. Doctors remove a woman’s ovary and keep 20% for research. The other 80% is cut into strips, sewn together, and then hopefully implanted in the woman’s body years down the line when she’s healthy again. Some women opt for egg freezing, which is difficult because eggs are mostly water. If ice crystals form, the egg is rendered unusable, so only 4% of frozen eggs actually yield live births. And there is the option of freezing embryos, which has a 25% live birth rate but involves the tricky problem of requiring a partner. If a woman is single, or casually dating, whose sperm does she use to fertilize the egg?

Kristin and I also talked about the preservation of fertility for young cancer survivors–girls who have yet to hit puberty–through ovarian tissue cryopreservation. This is an extremely touchy subject–parents don’t want to talk about their daughters’ future sexuality, especially when that daughter has just been diagnosed with cancer. But if they don’t have that talk, the daughter will most likely be sterile. The IRB protocol has not approved the procedure for anyone under 18 and the NU hospital doesn’t see patients under 18, so parents who want their daughter to have the procedure have to go to Milwaukee, another problem with the procedure. Still, Kristin said around 10 or 11 girls have had it performed.

It was a tough emotional day. I heard stories of women my own age dying of stage IV colon cancer; stories of women who wanted desperately to become mothers, only to learn that dream was no longer possible; stories of women whose partners refused to let them use the embryos they had frozen. The whole day made me grateful for the doctors and researchers working to make these women healthy and able to have children if they so desired.

Oncofertility Scientist for a Day

Day 2 with our embedded journalist.

—–

By Kirsten Tellam

I was really excited for my day at the oncofertility lab today– I actually got my hands in a pair of gloves and did some work!

First it was time for follicle isolation. Ovaries are composed of follicles, or aggregates of cells that usually hold a single egg. My job was to put an ovary under a microscope and, using syringes, separate the follicles. This was much more difficult than I thought–it was disconcerting to be moving my hands based on what I was seeing under the microscope and not with my own eyes! I was not a great follicle isolator, that’s for sure.

Courtesy of Huge Galdones

Then I got to encapsulate the follicles, which I had more fun with. Jen put some isolated follicles in alginate, which I then picked up using a pipette and put into a calcium solution. The word she used was “beading”–I dropped a bit of the alginate with the follicle in the shape of a bead into the solution. I successfully moved 7/8, which she said was pretty impressive for a first-timer. If done by someone who actually knows what they’re doing, the bead is then cultured and photographed, but they obviously couldn’t use my work–who knows what I inadvertently did wrong!

I had a great time in the lab today. It was really interesting to see the care and precision with which even the smallest of tasks must be done. And even though I don’t want to see dissections every morning, I did manage to survive without fainting, which I consider a plus!

Up for tomorrow: the social science day. I’ll learn about the history of oncofertility, social science issues, and patient navigation.

Pimento in Green Olives? Yeah, Not Pimento

An aspiring science journalist, Kirsten Tellam, embedded herself at the Oncofertility Consortium last week. Tellam, a Masters of Science in Journalism candidate at Northwestern University’s Medill School of Journalism, agreed to share her experiences as a guest on our blog.

———–

By Kirsten Tellam

Apparently, in most cheap green olives, the pimento in the center isn’t actually pimento at all. Instead, it’s alginate–a gelatin-like substance that is also used in scientific experiments. Ew.

This wasn’t the only thing I learned in my first day at Dr. Teresa Woodruff’s oncofertility lab, but it certainly was the most surprising.

I started my day with a tour of the lab, which was much larger than I was expecting. I met at least fifteen researchers, each with a different job and responsibility (and felt a little embarrassed–I could only understand about half of their job descriptions).

After getting the grand tour, Jen Jozefik (my program coordinator and the lab’s director of training) showed me an alginate demonstration and explained how it’s used in oncofertility for follicle encapsulation. I also got to see slides of mouse testes being created and bacteria cultures being set up.

Jen gave me a few packets of light reading (“Identification of a Stage-Specific Permissive in Vitro Culture Environment for Follicle Growth and Oocyte Development,” anyone?) so I could better understand the lab’s mission. Then I watched a video about the Oncofertility Saturday Academy, a program for high school girls at the Young Women’s Leadership Charter School. The program teaches admitted girls the basics of science and then lets them research and perform experiments. The video was really moving–the program helps girls realize that boys aren’t the only ones who can be successful scientists. I think it’s really important that this world-famous lab is investing in tomorrow’s scientists, particularly those who might not otherwise have the chance to realize their dreams.

My day was mostly an introduction to the lab and its practices. Tomorrow I get to do some actual research! I’ll be learning about follicle isolation and encapsulation and trying to isolate follicles and view follicle cultures all day. I’m excited to spend the day as a researcher would, but also a little nervous–I haven’t done any lab work since high school.

I feel like I know a lot more about oncofertility and actually have a good idea of what is happening in the lab after just one day there. And I learned a particularly important lesson: no more cheap green olives for me.

Ready for Movember!!

Don’t worry, it’s not a typo – Movember is the proper name for the month of November where men join together to grow moustaches (aka the mo) for the whole month in order to fundraise and raise awareness about cancers that affect men.  The moustache is Movember’s ribbon, where “Mo Bros” are literally “changing the face of men’s health.”  Movember, which originated in Australia, has grown tremendously since its inception in 2003.  Last Movember, 255,755 Mo Bros and Mo Sistas (women who support their Mo Bros in bringing attention to men’s health) from all over the world raised $42 million from the generosity of more than one million donors.

This year, Movember will donate the money raised from the US campaign to the Prostate Cancer Foundation (PCF) and LIVESTRONG.  The PCF uses the Movember funds to support research on the treatment and prevention of prostate cancer.  The money given to LIVESTRONG will be used for a variety of projects, one of which is Fertile Hope, the fertility preservation initiative dedicated to educating and supporting cancer patients and survivors whose treatments and/or disease put them at risk for infertility.  As a Fertile Hope Center of Excellence, the Oncofertility Consortium is excited about the partnership between Fertile Hope and Movember and encourages everyone to support the cause!  For more information on male fertility preservation, please call 866-708-FERT (3378) or visit myoncofertility.org.

On a personal note, I am particularly excited about Movember because my husband is part of a Movember team.  We each have prostate cancer in our families, so the issue hits close to home.  I’ll keep you updated on his progress and share pictures of the ‘stache.  It should be a fun (and hairy) adventure!  Leave a comment and let us know about your plans to participate in Movember!

Trick or Tweet!

I’m a newcomer to Twitter, never having caught on to the Twitter craze that has become so popular among groups and individuals, young and old.  In working with oncofertility@twitter, I must admit that I am really enjoying learning how Twitter works, and most importantly, learning from members of the Twitter community.  Who knew that so much could be shared in 140 characters or less?

The Oncofertility Consortium joins a large group of cancer and fertility support organizations on Twitter to raise awareness about cancer issues, ranging from prevention to survivorship.  The exchange of ideas and information through daily and even hourly tweets allows this active community to continually grow and gain a stronger voice.  Oncofertility@twitter works to put fertility preservation at the forefront of cancer care by providing resources, giving updates, and sharing expertise on how to handle fertility-threatening diseases or treatments.  Each tweet is a teachable moment that informs patients and their families about the opportunity to secure biological parenthood after cancer.  Currently, there are 64 followers of oncofertility@twitter – follow us today and bring us closer to our goal of 100 followers by Thanksgiving!

Have a safe and healthy Halloween!

PS: Also follow us on facebook!

Oncofertility at the USA Science and Engineering Festival

The National Mall in Washington D.C. was the place to be for inquisitive minds this past weekend–the USA Science and Engineering Festival held there on Saturday and Sunday drew crowds of nearly 1 million people who took part in over 1,500 hands-on activities, exhibits, and science shows.  Our own Institute for Women’s Health Research had one of these exhibits, where Cathryn Smeyers and I were able to share information about the Women’s Health Sciences Program and to help spread the word about Oncofertility.

Did you know that the “pimento” in most cocktail olives isn’t really a pimento at all–it’s actually made from a compound that comes from seaweed?!?  No?  Well you’re not alone–this came as a surprise to most of the 2000 visitors to our booth, each of whom diligently dissected that “little orange thingy” out of an olive and found out what in the world it has to do with women’s health.  They found out that the seaweed compound inside some olives is called alginate, and each visitor got to mix some alginate with a calcium solution and watch what happened.  Even kids as young as 2 were eager to give it a try and to squish the little beads that formed when the alginate came in contact with calcium.  Our slightly older audience members were also very interested to find out how researchers at the Oncofertility Consortium are using these little alginate blobs as a sort-of artificial ovary–allowing ovarian follicles placed inside them to hold their 3D shape as they grow, so that we can learn how to grow healthy eggs outside of the body.  To learn more about this process for yourself, check out this animation at myoncofertility.org.

The Festival was a very exciting and inspiring place to be!  It was invigorating to see so many young people excited about all kinds of science, and to hopefully encourage them to become part of the next generation of leaders in science and medicine.  This Festival was the inaugural run of what will hopefully become an annual event.  Be sure to check out the 2010 Expo Days Recap Video to get a taste of what the Festival had to offer!  In the words of President Obama, “Keep exploring, keep asking questions, keep having fun.  The future of this country and the advancements of the next century are in your hands.”  “My hope is that this festival is just the beginning for all of you–that’s not just the power of science, that’s the promise of America.”

Interview with Holly: Oncofertility Patient in TIME Magazine

The October 11, 2010 issue of TIME magazine highlighted the importance of fertility preservation for cancer patients. The article discussed the mission of the Oncofertility Consortium and interviewed a young cancer survivor, Holly, who underwent fertility preservation at Northwestern Memorial Hospital in Chicago, IL. Since Holly works down the street from us here at the Oncofertility Consortium, I recently had the opportunity to sit down with her and learn more about her triumph against cancer.

The TIME article told the story of Holly’s breast cancer diagnosis and treatment in 2009. In our lunch meeting, I was surprised to learn that this was not her first battle with cancer. At age 14, Holly was diagnosed with Hodgkin’s lymphoma. As we sat down for lunch, she described the rigorous treatment of that first cancer with, “six months of chemotherapy and an additional two weeks of radiation therapy.”

Due to the type of radiation treatment, Holly knew she was at increased risk for later breast cancer so when she was 25, she began annual screenings. According to Holly, “the first year I went for monitoring was the only mammogram that was normal.” After that first screening, every yearly exam found some kind of mass that ended up being benign. But in 2009, the newest mass was diagnosed as malignant. Holly remembers the day well because it was, “two months to the day after I got engaged.”

Over the next month, Holly worked with her doctors to develop a treatment plan for the cancer and to preserve her fertility. She and her fiancé, Rich, decided to undergo hormone stimulation for embryo banking before completing the cancer treatment that may have impaired her fertility.

More than a year later, Holly is cancer-free, a newlywed, and already looking forward to using her stored embryos. “It is very exciting that these embryos could become our babies,” she said. As she sat across from me at lunch, I could see the peace-of-mind that the frozen embryos give her. According to Holly, “With all of life’s uncertainties-why add more?”

Parthenogenesis and Policy in Science Magazine

An image of a parthenote, courtesy of Alison Kim, PhD

An interdisciplinary team from the Oncofertility Consortium published a paper today in the journal Science on the intersection of politics and scientific research. The group, made up of a historian, a bioethicist, and scientists from the Oncofertility Consortium highlighted how a flawed U.S. law restricts research in fertility preservation for cancer patients. Specifically, the law prevents federal funding to pay for research that uses parthenotes in research.

Parthenotes are a group of cells derived from an egg that begins dividing without fertilization from sperm. The short policy article in Science describes the biology of parthenotes and explains their potential broad benefits for research in many aspects of cancer, fertility, and oncofertility. As we discussed in a previous blog post, parthenogenesis could be used for researchers to identify eggs that are healthy enough to begin the early stages of cell division. This activation would allow scientists to identify methods to successfully mature eggs outside of a woman’s body that are ready to be fertilized. This could help oncofertilty patients who have lost the ability to have biological children due to cancer and its treatment.

Tingen et al. also describe the history of the law-in-question, the Dickey-Wicker Amendment, which prevents the production, use, or destruction of embryos or parthenotes with federal money. In 1993, the U.S. Congress and President Bill Clinton gave the National Institutes of Health (NIH) the authority to provide financial support for human embryo research. Before funding such research, the NIH established a group of 19 experts in science, medicine, ethics, law, and social science, called the Human Embryo Research Panel to determine the moral and ethical issues raised by this research.

The panel found that the creation of parthenotes for research purposes was ethically acceptable while embryo research warranted additional review. As such President Clinton directed the NIH to prevent funding for most embryo research but allowed them to provide money for studies on parthenotes. A few years later the Dickey-Wicker Amendment was drafted to restrict all embryo research. Looking at prior legislation, these non-scientists included the term “parthenote” into the bill.

Recent legal rulings have brought embryo research and the Dickey-Wicker Amendment into the spotlight again. Rather than continue this mistake in the law, the authors in the Science article call for the removal of parthenotes from the Dickey-Wicker Amendment. They provide a more detailed explanation of their position in an upcoming article in the American Journal of Bioethics.

Page 37 of 55« First...102030...3536373839...50...Last »
 
© Oncofertility Consortium Blog