Teen and Young Adult Cancer Patients Must Be Told About Fertility

Joyce Roenike

If there’s anything that can rob you of the joys of being a teenager or young adult, it’s a cancer diagnosis. When you hear a doctor say "you have cancer" at such a tender age, you often feel as if you've lost your youthful innocence forever.

 

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.

 

EXCLUSIVE: Legendary Rock and Roll Troubador Jim Messina Continues to Shine

Jim Messina - Photo by Barry Sigman

Jim Messina's contribution to rock and roll has been quietly profound. From his days engineering, producing and then joining the legendary Buffalo Springfield in the 1960's, to his years as co-founder of country-rock pioneers Poco, to his most identifiable role as half of 70's super-duo Loggins & Messina, to an enduring solo career, Messina has had a career filled with memorable musical moments. 

A skilled mixer, producer and musician, Jim's work ethic, calm confidence, songwriting skills, melodic sensibilities, spot-on guitar work and underrated singing voice have served him well in a career that has lasted more than 50 years.

In a generously in-depth interview from his home outside Nashville, where he's preparing to get back on the road, Jim shared nuggets from a lifetime of music. 

The years with Buffalo Springfield were perhaps the most exciting, he says, but also the most chaotic. Whenever you have Neil Young and Stephen Stills in the same room, you know you’re going to get both their genius and their fireworks.

"It was just a matter of being prepared for that opportunity. It was not my first rodeo, but it was a big record. I got along with them all," Jim says, adding that Young was the first member of the band that he met.

“I thought he was the producer," Jim says. "And Stephen was Stephen: always in the groove, always ready to go. He just wants to get things done. Richie [Furay] was writing songs and singing, but he couldn't read music, he needed more help. Each of the members of the band worked in very different ways." 

Buffalo Springfield

 Jim didn't realize just how difficult this collection of musicians were until he was deep into the recording process.  

"It was like herding cats. They never argued in front of me and they weren't disrespectful to me or to one another, but they weren't really interested in being in the same room with each other or in recording at the same time. It was just a personality thing,” Jim says.

Speaking of personality things, it was David Crosby who first introduced Jim to the band. "I’d known David for a while. We lived together in Santa Ynez. He is outspoken, he says what he wants to say, but you tolerate him out of respect," Jim says. 

"I don't know that he has ever admitted to being an asshole publicly. He was always kind to me, but he was unfiltered. Sometimes you just want to say, 'David, put a sock in it, please'. "

From his earliest musical years in a surf-rock band to today, Messina has never stopped learning and teaching. He continues to positively challenge himself, his fellow musicians and his audience in a gentle way. 

Through the chaos of three seminal rock and roll bands, Jim has remained cool, calm and kind. He's always been a token grownup in an industry that celebrates eternal adolescence.  

Even in a room with older professionals, Jim’s typically the one who chills people out and gets things done.

"I always wanted to do what I wanted to do. I felt I had to take control, but it was unconscious to me. Maybe I was a natural herder," he says. "I was always the guy who was there first, and I was always the last guy to leave and lock the doors. I always signed the contracts and made the deals. I mean, someone had to be responsible, right? I never really liked weed, it made me dizzy and paranoid. I just can't mix it.”

Jim, who'll be performing songs from his entire career at the Coach House in San Juan Capistrano, Calif., on Wednesday, April 20, never takes his charmed life and career for granted. He still enjoys the ride, and it shows every night he’s on stage.

Fellow musicians began to take notice of Jim Messina when he was an engineer at Harmony Recorders and Sunset Sound in Southern California. That's where he was first introduced to the Laurel Canyon crowd. Crosby asked Jim to record the first demo for a burgeoning folkie singer named Joni Mitchell. After that session, the Messina buzz spiked. 

The biggest break came in 1966 when Jim was hired to be the recording engineer on the Buffalo Springfield's second album, Buffalo Springfield Again. Young recruited Messina to work on several of the band's songs including "Broken Arrow."

A year later, Atlantic Records founder/president Ahmet Ertegun called Jim at 10 p.m. Jim’s time and asked him to produce the band’s third and last album. Messina without hesitation said yes. Not long after that, Jim replaced the departing Bruce Palmer as the band's bass player and headed out on tour with the band.

Poco

After Buffalo Springfield met its inevitable demise, Jim formed Poco with fellow Buffalo Springfield member and prolific singer-songwriter Furay. Poco, a band that continues to be absurdly left out of the Rock and Roll Hall of Fame, essentially created the country-rock sound that would have an immeasurable influence on a generation of bands, most notably The Eagles.  

There would be no Eagles without Jim Messina and Poco. Nor would there be the country-rock sound that now largely defines the Nashville sound. 

Messina wrote “You Better Think Twice,” Poco's first hit single, and left Poco after three excellent albums and was hired as an independent producer with Columbia Records. He says he left the band because he just wanted to stay in one place for a while and work with musicians producing new records, which is one of his deepest passions. 

Jim also knew that the rock and roll lifestyle was creeping up on him and he wanted some sanity and calm. But that sanity and calm was soon to be replaced by shock and awe, in a good way. Those producing days at Columbia led him to a fateful meeting set up by the record label in late 1970 with a skinny but confident young singer-songwriter named Kenny Loggins.  

Jim, who was asked by the record company to produce Kenny's first record, invited Kenny to Jim's house in L.A. As they jammed in Messina's living room and got to know each other a little better, Messina began to realize the vastness of Loggins' potential. What a diversely talented guy Loggins really was, Messina thought.  

On that day and in the subsequent days, Jim helped Kenny stretch out, challenging Kenny's musical boundaries as well as his own as they both spread their wings.  

"'Danny's Song" and "House at Pooh Corner" were sweet songs, and his influences were largely folk artists. But I realized that Kenny had a real love for R & B," Messina recalls. "He worked at ABC-Dunhill as a songwriter, and he could do almost anything. He could sing like Elton John and Leon Russel. I was encouraged that he wanted to do something diverse."

Loggins & Messina

Messina, who likes producing music that crosses over genres for a more global effect, says that Loggins & Messina was built to be as musically broad as possible from the get-go. 

"We knew this would give us an opportunity to have real and sustained success and not be pigeonholed. And we were lucky. We were the recipients of a bit of good fortune in that radio stations were changing at the time. You could hear Janis Joplin and Earl Scruggs and Johnny Cash on the radio. The audiences were college students, they were educated and interested in what was new,” Jim says.

The two musicians meshed poignantly. The enthusiasm and positive on-stage vibe. The harmonies. The charisma. The dry wit. It all worked. This was a band with talent and personality. The name of that first album became Kenny Loggins with Jim Messina Sittin' In. But it ultimately became known simply as "Sittin' In."  

The band that Jim and Kenny brought in to record and tour as Loggins & Messina was a collection of all-star musicians who could effortlessly play multiple types of music and improvise. These musicians included bassist Larry Sims, drummer Merel Bregante, multi-instrumentalist and oboe and saxophone master Jon Clarke, and violinist/multireedist Al Garth.  

Loggins & Messina's subsequent ascent to the top of the charts was deeply gratifying for Messina. Over the next seven years, Loggins & Messina would become one of the most successful duos in rock history, to this day. The band released eight hit albums, had multiple hit singles and sold more than 16 million albums. And they never compromised, they continued to play songs in a variety of formats.  

The band created such songs as “Be Free,” “Thinking of You,” “Lahaina,” “Travelin’ Blues,” “Sailin’ the Wind,” “Peace of Mind,” “Changes,” “Your Mama Don’t Dance,” “Listen to a County Song,” “Golden Ribbons,” “My Music,” “Nobody But You,” and many more. 

Despite the band's enduring popularity, Loggins & Messina remains one of the most underrated bands of the rock era. Pretentious, tone-deaf music critics didn't embrace the group's smart, melodic and eclectic sound nearly as generously as they should have. But the public did. So did musicians. So did radio programmers, both FM and AM. And so did concert audiences, who were consistently blown away by the band's energetic live shows.

The Loggins & Messina experiment dabbled in rock, pop, country, jazz, singer-songwriter, folk, Jamaican and more. L&M carved out a niche that was just right for those introspective times. The extended jams on "Vahevala" and "Angry Eyes," for example, were ethereal, improvisational, jam band-ish, melodic, and they rocked. 

But of course like most good things, Loggins & Messina came to an end in 1976. It was not a surprise. Everyone knew that Kenny was destined to pursue a solo career, which he did, of course.

Jim's subsequent solo years produced some of the best work of his career. The first album Jim released after he and Loggins said their goodbyes was Oasis in 1979. A superb record, Oasis, which was recorded at Santa Barbara Sound Recording in Santa Barbara, Calif., is filled with brilliantly conceived songs with a Latin jazz feel.

Jim explains: "The record was largely Latin jazz, but with a rock base. The record sold around 150,000 copies, people liked it, and it would have sold a lot more but the record company decided not to support it. A record executive told me he didn’t like it because it didn't sound enough like Loggins and Messina, and he stopped supporting it. I dropped dead and said, 'You've got to be kidding me, I spent $400,000 of my own money to promote that record'!" 

This was of course a classic example of a music business "suit" making a decision about music that he was simply unqualified to make. It happens all the time, to this day. But this was a particularly egregious and infuriating example given Jim's following, musical pedigree and talent. These were fantastic songs that deserved an appropriately positive and aggressive publicity effort. The record was basically shelved.

But what matters most is that it was a tremendous record, a groundbreaking album that has aged remarkably well. Oasis showed, again, what a talented and diverse songwriter Jim is. Ask anyone who's actually listened to Oasis. The songs stay with you: “Seeing You For the First Time,” “Do You Want to Dance,” “A New and Different Way,” “Talk to Me,” “Free to be Me,” “Love is Here,” “Waitin’ On You,” “Is This Lovin’ You Lady,” and “The Magic of Love."

The record label's decision was understandably hard for Jim to accept. 

"The record label executives just need to do a better job of getting to know you, your successes, all sides of you as an artist," Jim says. "Look at Loggins & Messina. Look at the musical diversity we had. The record label guys need to understand that an artist is going to come out with something new and different from time to time. Elvis took risks, so did Sinatra."

The executive who decided to ignore Oasis was, Jim says, "Just not right for that job. He was incompetent. He cost us a lot of time, effort, money and our audience."

While Oasis deserved a much better fate, I am happy to say that I discovered it the first week it was released. And, well, so did my neighbors. I had been waiting eagerly for Jim’s first post-L&M effort, and I wasn’t disappointed. The record was released at a perfect time in my life. I had just moved to Santa Barbara from the Midwest to attend college. Jim was also living in Santa Barbara at the time. Oasis was the soundtrack of my first year in California.

A year or so later, Jim signed a new contract with Warner Brothers and released his second solo album, Messina. It, too, was tremendous, and it was a bit more eclectic, with rock, folk, jazz and more Latin. Two years later, Jim released One More Mile, which was more of a rock-focused album. 

Each of Jim's three solo records in the 1980's was filled with outstanding songs and superb musicians. But Jim has never released a record that wasn't well produced, well written and well played. 

And he’s always tried to get along with the people with whom he's worked. Egos are an inherent part of fame, but Jim never seemed caught up in his own success or in the hoopla of rock and roll. He just loves the process of making music. 

Jim keeps a relatively low public profile, but he's never really been out of the spotlight. He still tours regularly and his shows sell out. But he gets back home every couple of weeks. Family matters to him.

Jim, who is also an accomplished painter, says he is "still enjoying discovering who I am, where I've been and most significantly, where I'm going."

Of all the things that have happened in Jim's career, though, perhaps the coolest and most heartwarming thing has been his reunions with Loggins. It took a while, but it was worth the wait.

In 2005, Jim and Kenny reunited for the first time and went back out on the road, as I wrote for San Diego Magazine. This happened after 30-plus years apart. They enjoyed a hugely successful nationwide reunion tour that produced a CD and DVD entitled Live: Sittin' In Again at the Santa Barbara Bowl. 

At the time, Jim revealed the original master analog recordings that he had produced and mixed for Loggins and Messina at Columbia Records, which became The Best: Sittin' in Again.

The duo reformed again in 2009 for an extensive tour. It was another big success.

Both Jim and Kenny have admitted that they really were not close friends during the 1970's when they made musical history together. The real offstage friendship came years later, and it is still going strong. 

On July 15 and 16, Loggins & Messina will ride again when they appear at the Hollywood Bowl in what promises to be an emotional concert for the ages. 

Jim is justifiably proud of his musical accomplishments. But he should have been inducted into the Rock and Roll Hall of Fame not once, not twice, but three times!

Hear me out:

*  Jim should have been included when the Buffalo Springfield was inducted back in 1997. Jim played a huge roll in the band as a full-fledged member, as well as a producer and engineer.

*  Poco, a hugely influential and creative band, also should have been inducted into the RRHOF years ago for being arguably the most influential country-rock band of them all,as I mention above. Three members of the band have been inducted into the Hall as members of other bands (Furay with Springfield, and Randy Meisner and Timothy Schmit with The Eagles).

*  Loggins & Messina definitely should have been inducted into the RRHOF many years ago for obvious reasons. They have been eligible since 1998.

But there is no bitterness about any of this from Messina. He’s not the kind of guy who you will ever find sitting on a dusty couch obsessing about what could and should have happened in his music career. 

He's too busy playing music, painting, and spending time with his family. Life is good for this legendary troubador. 

“I was given a lot of responsibility in my career. And it came early,” Jim says. “I just didn't want to violate the trust I was given. For me, it's always been about the work. It’s always been about the music.”