As part of our guest blog series, the Oncofertility Consortium would like to introduce our readers to Shannon Routh, and her organization for young survivors of ovarian and gynecologic cancers, Teal Diva, founded in 2009. Below is a post she wrote about her experience with cancer, fertility and finding the “new normal” in her life.

By Shannon Routh

Remember the MASH (Mansion-Apartment-Shack-House) game you used to play when you were a little girl, to predict what your life would be like when you grew up? The game where you choose your husband, how many kids you will have, where you will live, etc.  It’s funny how the words cancer, infertility or hysterectomy were never a part of my outcome.   My story ends a little differently than I had hoped…dreamed.

My husband and I were married just shy of 3 years when we got the news…you have ovarian cancer.  A few months prior to being diagnosed, I had abdominal pain.  I went to my gynecologist.  After reviewing my ultrasound, she noticed a cyst the size of a grapefruit on my ovary.  She referred me to a Gynecologic Oncologist.  As he prepped us for surgery, he told us we had 3 scenarios: 1-remove the cyst, 2- cancer, removal of cyst and ovary, and 3-cancer, hysterectomy, etc, etc, etc.  After surgery, I woke up asking if he did a hysterectomy and I was told he did not.  Oh my goodness…I was so relieved, so thankful.  The day I was released from the hospital is the day I learned I had stage IIa Clear Cell Carcanoma. I was 32.  And because of my age and cancer type, he wanted to be certain prior to taking both ovaries.  Wait…does that mean?…yep.  A 2^nd surgery was scheduled.  We went home…devastated.  In an effort to remain positive, I thought we could harvest eggs and pursue other options.  We went in for a consultation a few days before the radical hysterectomy and asked hopeful questions about our options, but we were told my cancer type feeds off of hormones. Unfortunately, you will not be able to bare children.  So not only do I have cancer, I can’t have kids.  WOW…talk about depressing.  But I didn’t have time to feel sorry for myself because I had to prepare for the hardest fight of my life.

My world was turned upside down by having cancer and learning I would never bare children, but I have found a new normal…one I didn’t plan for.  Throughout my journey, I needed desperately to connect with someone. So, one night I started writing and before I knew it, Teal Diva was born.   The mission of Teal Diva is to celebrate life!  As survivors of ovarian and other gynecological cancers, we understand the reason to celebrate every sunrise.  We are bound by our experiences and challenges and form a sorority which we never intended to join.  The primary beneficiary of our fundraising efforts are research programs seeking reliable screening tests for gynecologic cancers.

*To learn more about Teal Diva and other community resources for cancer survivors, please visit our Patients webpage.

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.

More than two years ago, Kara DeFrias began a blog about her journey to conceive a child. Over two years, this journey was unsuccessful. In the attempt to determine the cause of her infertility, doctors discovered that Kara had uterine cancer in February of 2010, at age 34. The cancer was still relatively early so while Kara had to undergo a surgery to remove her uterus and ovaries, Kara did not need chemotherapy or radiation. Prior to the surgery, Kara began working with Oncofertility Consortium members at the University of California, San Diego to undergo embryo banking. When Kara’s uterus and ovaries were removed, Kara donated some of her ovarian tissue to support the research at the Oncofertility consortium. Since her uterus was removed, Kara and her husband have begun to look into getting a surrogate for their child and it is looking promising. Kara’s chronicles are an inspiration to other fertility preservation patients. Read them here.

A cervical cancer survivor wrote an article on commercialappeal.com. It was published on Mother’s Day and encourages women to get tested for HPV, whether the woman has had the HPV vaccine or not.

Michelle Whitlock, who wrote “My thoughts: Simple tests can help reduce rates of cervical cancer,” mentions briefly that she was lucky enough to harvest her eggs before her treatment began.

One of the issues we have to deal with in Oncofertility is communication and dissemination of information – to have a doctor explain to you about your fertility options at such a crucial moment, when you might be running out of time to start treatment, is not very common and this must change.

Or perhaps Michelle took the initiative to find out the information on her own, which is commendable. But if you are a young child, or haven’t thought about a baby, much less a boyfriend or girlfriend, and all you are thinking about is fighting for your own life, it would be helpful to have your doctor talk to you or your family about the options available to you.

Check out the article here: HPV tests.

Northwestern Memorial Hospital is hosting a half-day conference on Saturday, May 17th called ”State-of-the-Art Hysterectomy: The Robotic Surgical Option.”

Dr. Patrick Lowe will be one of the speakers at this event. He was one of the doctors who participated in the Oncofertility Saturday Academy, teaching students from the Young Women’s Leadership Charter School about oncofertility and surgery. Those who attended Dr. Lowe’s module were given the opportunity to operate a Da Vinci robotic surgery machine – the same machine used to perform minimally-invasive hysterectomies.

Dr. Patrick Lowe from Northwestern Memorial Hospital stands by as a student from the Oncofertility Saturday Academy tries her hands at the Da Vinci robotic surgery machine, sometimes used to perform hysterectomies. Photo by Tara S. Kerpelman

The event at the hospital will include lectures, demonstrations and a talk by a patient who underwent robotic surgery.

The conference start at 8:30am and it costs $20.

For more information, go to Northwestern Memorial’s site: Robotic Hysterectomy Event.