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| Joyce Roenike |
But you haven’t. It mercifully resurfaces when you’re first shown how the cancer treatment is working. And again when you’re told you’ve gone into remission. And that joy often returns most profoundly when you have children of your own.
Tragically,
far too many teen and young adult cancer patients are never told that certain
types of chemotherapy and radiation, as well as the cancer itself, can keep them from having children.
Patients in this age group are not always told by their doctors or nurses about
the importance of fertility preservation before they begin cancer treatment. And fertility preservation advocates say that has to change.
“I had no idea. No one told me anything at first about the importance of fertility preservation,” says Joyce Roenike, an attorney and 23-year survivor of leiomyosarcoma, a type of rare cancer that grows in the smooth muscles in the hollow organs of the body, including the intestines, stomach, bladder, vessels and uterus.
Roenike was fortunate, however. She was told before she began her treatment that it could keep her from having kids.
“I was thankfully put on notice of my fertility risks, which was uncommon at that time. I am so thankful that I was told," she says.
Roenike and her husband went through a type of fertility preservation called embryo banking. Then they had a surrogate carry the babies to term.
“Our twin daughters are healthy and both in college now,” says Roenike, whose fertility experience inspired her to become an advocate for her fellow cancer patients and their loved ones.
She is now president of the Alliance for Fertility Preservation (AFP), a 501c3 charitable organization whose primary goal is to educate the public and fight for federal legislation so that everyone in the teen and young adult age group is told about the fertility risks before beginning cancer treatment.
According to AFP, every year in the U.S. approximately 1.5 million people are diagnosed with cancer, and almost 10% of these new diagnoses occur in people who are 45 or under.
Many of these people have not yet had children.
For these patients, preserving their fertility and protecting their parenthood options is an important part of their survivorship and life after cancer.
Cancer can affect the reproductive system. This occurs when there is cancer of the reproductive organs including the ovaries, uterus, cervix and testes.
Roenike, who's also the co-author of "100 Questions & Answers About Cancer and Fertility" and has given many presentations to audiences nationwide, explains that patients can have impaired fertility, possibly due to the stress of their illness on the body, even before they begin their cancer treatments.
The cancer treatment itself, including chemotherapy, radiation, and surgery, can also damage the reproductive system. Some treatments, including certain chemotherapies and radiation, are gonadotoxic, meaning they will destroy sperm and eggs and therefore cause infertility.
Some treatments, including surgery as well as radiation, can cause mechanical damage to the reproductive system, through the removal of reproductive organs or damage to their ability to function.
Patient Populations at Risk
In the United States, many men and women are starting their families later than they did a generation ago. Data from the U.S. Centers for Disease Control and Prevention (CDC) show that the national average age for first births among U.S. women rose from 21.4 in 1970 to 25 in 2006.
Just 20 years ago, many people who were diagnosed with cancer in their 30's or early 40's may have already completed their families. But today, they may just be getting married and thinking about parenthood.
Survival rates are rising, too. The American Society of Clinical Oncology (ASCO) reports that an estimated 379,000 people in the United States are survivors of childhood and adolescent cancer, diagnosed before age 20.
ASCO notes that 83% of children and adolescents diagnosed with cancer will live at least five years or more following their treatment.
While this represents a great advance in treatment, many of these survivors are now facing the late effects of their earlier cancer treatments, including infertility.
Roenicke says that to date, only 11 states have fertility legislation. “In terms of legislation for coverage, almost everything to date has been at the state level,” Rienecke says. “We hold out hope for a federal bill.”
Maria Andrulonis - “It’s a Boy!”
When Maria Andrulonis (right, with her husband) was diagnosed with cancer at age 31, she didn't know who to turn to for advice about fertility and cancer.
She knew that she wanted to have children, but she was
anxious and not sure where to go for help.
She eventually found UC San
Diego Moores Cancer Center, where she met H. Irene Su, a professor of
reproductive endocrinology and infertility fellowship in the department of
obstetrics, gynecology and reproductive sciences.
“She was excited to help me. She told me that I had this option, and she also told me that I had to get my medication soon because I only had so much time before I began the chemotherapy. I was placed in a clinical trial, and the care they provided, the tumor board meetings, made all the difference," Andrulinis says.
The loss of innocence for Andrulonis actually began not with her cancer diagnosis but with her father's diagnosis. She was taking
care of her father and dealing with his cancer, then dealing with her own
cancer. Needless to say, it was a stressful time for her.
But she was determined to not let her cancer rob her of her desire to have children.
“You want to move forward in life, and your peers are getting married and having kids, and most cancer patients are my parents’ age or older, there are just not as many in my age group," she says.
During her cancer treatment she got surprised looks from other patients.
“In the waiting rooms you get double takes, you can see that they are wondering what someone my age is doing there. In the chemo suite you get looks like ‘you are so young, you are my child’s age’. They just don’t understand.”
Getting Her Innocence Back
Almost as soon as she was diagnosed with cancer, Androlinis thought she may not be able to have kids. So, she wisely chose to look into fertility preservation.
“We preserved the embryos. It was a week and a half of injections. I felt more pregnant than I do now,” she says.
“We stored them, did the transfer, and it took. It’s a boy. I am expecting at the end of July. When you hear the baby’s heartbeat, you know that it worked. It is mind boggling. Doctors should automatically tell cancer patients about fertility.”
The part of
the experience that really stays with Andrulonis is just the notion of pregnancy
after cancer.
“I wonder if other
survivors have the same thoughts,” she says.
“I was never looking forward to
the actual pregnancy part. I just want the baby part. I feel like everything my
body has been through from chemo but then through hormone therapy,well, my body
hasn’t been mine for the last 6 years. It’s been manipulated with medications to
fight cancer and become something that I don’t know as the same anymore.”
Andrulonis says the concerns about fertility added more stress to the equation.
“My chemo was pretty standard, and I did pretty well with it, but it wasn’t easy,” she says. “I remember going back to the working world after cancer and hearing women talk a little bit about their pregnancies and it reminded me a lot of chemo. I couldn’t think in my mind why people put themselves through that on purpose and for a longer period than my 6 months of chemo."
Andrulonis says she has been dreading the pregnancy part of all this.
"Maybe dreading isn’t the right word,
but I am more anxious and very unsure about it," she says. "When I met with Dr. Su to
re-establish care and talk about starting this process, I half-jokingly asked
her if there was such thing as an embryo crock pot, and if not then why not. She
giggled, and said she thinks I mean getting a surrogate."
Andrulonis says she told Su that they didn't have the money for that.
"I just told her that I want to thaw an embryo and sign papers, and they cook it and let me know when to come pick up the baby, and I show up with a car seat and take some parent test and go home with the baby," Andrulonis said. "Dr. Su again giggled and said she thinks I mean adoption.”
But all joking aside, Andrulonis wonders why we as a society haven't gotten to this point in medicine considering the fact that we have already cloned sheep.
“I’m sure ethics is a big
part of it,” she says, “but still, why not for people like me or people with
other health issues?”
Andrulonis was
partly dreading the idea, knowing that she was going into a process that she
knew would take another toll on her body.
“I knew it was going to be more injections and more loss of control of my own body. Instead of medications taking over for the long haul it would be medications and then a baby taking it over,” she says.
If she were younger, she says she might have waited longer after hormone therapy so she could have her body back to for a while.
“I wonder if other young survivors have these same feelings,” she says. “I know my oncologist mentioned that they prefer patients wait at least a year after treatment to try for babies. My first thought was who in their right mind wants to go through pregnancy and birth within a year of completing cancer treatment?”
Andrulonis went through a phase for the first year in which she wondered if she still wanted to have kids after 30 years of wanting children.
“I feared the process and pregnancy being like chemo and then having a recurrence and leaving my child on this earth putting them through losing a parent,” she says. “Was I the rarity in this thought process?”
So far, she says it has not been as bad as chemo.
“Granted, I hear the third
trimester and birth are the hardest parts of it all, so I’m somewhat living in
the idea that ignorance may be bliss. Either way, it’s coming,” she says.
“We want a few children, so I’m also hoping the rumor is true that once the baby comes, you forget everything else. If it’s not true, I’ll have a lot of sassy things to say to all these women that have told me this my whole life.”
Andrulonis is
deeply grateful that she was given this opportunity when so many others have
not, but, she adds, “It comes with a different set of anxieties, and maybe some
aspects of PTSD (post-traumatic stress) that surprised me along the way.”
Men Are Dealing With Similar
Concerns
Of course, men deal with
fertility issues, too. When I was first diagnosed with stage IV follicular
non-Hodgkin’s lymphoma back in early 1997, I was engaged to be married. And we definitely wanted to have a family.
I was 34 when I first felt the enlarged lymph node in my neck, and I did feel as if my innocence had been taken from me when I got the bad news that I had stage IV follicular non-Hodgkin’s lymphoma.
The doctor told me that I could live three to five years. That was hard to hear. But it was a nurse in my oncology clinic who told me that my chemo could leave me unable to have children. It simply had not occurred to me.
After learning about the
possible consequences of not preserving, I visited the sperm bank. Thankfully,
my wife eventually did get pregnant two and ½ years later, so we did not need
to inseminate. Our daughter Mandy Reno is now just a few months away from
graduating from college.
The point is, I was lucky. Someone did tell me, briefly, that if I wanted children, I should seek out fertility preservation. For those of you reading this who have recently been diagnosed with cancer, I urge you to ask your doctor about fertility preservation before you begin any treatment.
In this era of harsh politics and angry rhetoric, fertility preservation is one issue that I think and hope virtually everyone can support. Because it’s about families. Fertility preservation is a profound issue for teens and young adults with cancer -- both men and women -- who want to have a family soon, or later in life.
How to Get Involved:
Roenike says that in the past few years, many states have introduced bills that would compel
insurers to cover fertility preservation procedures for cancer patients and
others who are facing potential infertility as a result of medical treatment,
which is referred to as iatrogenic infertility.
In 2017, the first two states -- Connecticut and Rhode Island -- passed such measures into law, Roenike explains. Since then, several other states have followed, and a national trend toward coverage has developed. That's a good thing.
AFP has been working in collaboration with local cancer groups, interested professionals, nonprofits, and patients in many of these states. If you are interested in getting involved in these efforts, please reach out at:
advocacy@allianceforfertilitypreservation.org
This series on teen and young adults with cancer is commissioned by Teen Cancer America with financial support from Seagen.
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