WHAT IF YOU’RE UNABLE or unwilling to take on the hurdles of fertility preservation prior to treatment, and adoption just doesn’t seem right for you either? What if you were diagnosed with cancer several years ago and didn’t even know about the option of preserving your fertility? Do you still have a chance of conceiving on your own—or with a little help?
The short answer is yes. As I mentioned in chapter 1, the general rule is that the younger you were when you were treated for cancer, the better your chances are of eventually regaining your fertility, even if you got zapped with some of the nastiest chemo drugs. There are exceptions—even if you were a strapping, otherwise healthy twenty-one-year-old when you received a bone marrow transplant with full body radiation, you’re pretty unlikely to get your fertility back. And if you received strong pelvic radiation as a girl, before you hit puberty, your ovarian function may never recover.
But with these few exceptions, your odds of getting your fertility back after cancer may be better than you think. As I mentioned in chapter 1, recent research has found that women under forty often have a reasonably good chance of returning to normal menstrual cycles after chemotherapy causes temporary menopause, and in one study, about a third of these women became pregnant. (It’s not clear how many of them were actually trying to get pregnant, either.)
Just look at Lance Armstrong, who assumed that after the grueling treatment he underwent for testicular cancer in 1996, the only way he’d conceive a child would be using frozen sperm. After fathering three kids through IVF with those sperm, Armstrong and girlfriend Anna Hansen conceived son Max, born in June 2009, the old-fashioned way. “For less toxic treatments recovery often takes one to three years while for very toxic treatments (for example, preparation for a bone marrow or stem cell transplant) it may take as long as five to ten years, if normal sperm production returns at all,” notes the Center for Reproductive Medicine at the Cleveland Clinic. “Recovery of sperm production after this time is rare, but it can happen.”1
That doesn’t mean you shouldn’t still consider banking sperm or freezing eggs or embryos if the option is still open to you—just that you might still be able to have biological children even if the window for pursuing fertility preservation has closed.
How can you tell if you’re still fertile? It’s more obvious for a woman than for a man. If you are no longer menstruating regularly, odds are that you are no longer fertile. (Although even this is not a 100 percent guarantee—ask the women who’ve had “menopause babies!”) Usually, if you’ve gone through chemopause as a result of cancer treatment, you can expect that your menstrual cycles will return within a year of completing treatment. If it’s been more than a year and they haven’t come back, most doctors will say that the odds are fairly slim—although not zero—that they ever will.
But even if you’re menstruating again, that doesn’t mean you’re fertile. It’s certainly a good sign, but even women with clockwork periods may find themselves having difficulties conceiving. Just because you’re having regular cycles, it doesn’t mean that your ovaries are producing normal eggs that are healthy enough to conceive a pregnancy.
So assuming that your periods have come back, how can you tell if you’re likely to be fertile? One option is to seek out the advice of a fertility specialist, usually called a reproductive endocrinologist. You can find a doctor who is a member of the American Society of Reproductive Medicine on their website at https://www.asrm.org/euclid/detail.aspx?id=2328.
One of the first tests a fertility specialist will do measures something called your day 3 follicle-stimulating hormone (FSH). An FSH test measures how much of this hormone your body is producing in the effort to coax an egg to mature and release. If your ovaries are running low on eggs, your body senses this and produces more FSH as it tries to stimulate the ovaries to produce a good egg. There’s no absolute “you can’t get pregnant now!” cutoff for FSH levels, but the lower they are, the better. Most specialists in cancer and fertility like to see FSH levels at 10 or below. The higher your FSH levels are, the more likely it is that you’ll need assistance getting pregnant.
Most insurance companies do at least cover initial fertility consultation and testing, such as blood work, even if they don’t actually pay for fertility treatments. Others don’t—although, just as with egg and embryo freezing before cancer treatment, you may be able to persuade your insurance company to cover fertility services for you because your infertility is likely a “side effect of a covered treatment.” Simply modify the sample letters from chapter 2 to describe your situation (or have your doctor’s office do so).
If you can’t get coverage, or if you’re anxious about going in for an office visit when you’re not sure if you really have a problem, you can also take an at-home fertility test from First Response, which makes pregnancy and ovulation tests. These tests cost between $15 and $25 and are available from pretty much any drugstore—sometimes coming in packs of two or four. Instead of having the fertility specialist take your blood on day three of your menstrual cycle, you pee on a stick on that day. The test has its limits—it doesn’t tell you your exact FSH level but just says if you’re “fertile” or “not fertile.” If the test line that shows up in the little window is darker than the “reference line,” then you’re likely to have elevated FSH levels and should move ahead with scheduling that appointment at the fertility clinic. If it’s lighter than the reference line, or if no test line shows up at all, then you might consider trying to conceive “unassisted” for a few months.
Obviously, you’ll get a lot more detailed testing and information from a visit to a fertility specialist. But if you want to check things out in the privacy of your own home first, this is an inexpensive way to do it. Just remember that a “good” result—low FSH levels—is not an absolute promise that you’re still fertile, because FSH is only one way to assess your fertility.
Men who want to test their sperm motility at home used to be able to use a dual version of the at-home fertility test, called Fertell. Unfortunately, it doesn’t seem to be on the market in the United States anymore. Most places that used to sell it now say that it’s out of stock, so sperm testing is pretty much reserved for your doctor’s office for now.
Whether you want to try getting pregnant on your own or you’re seeking fertility treatments, as a cancer survivor you have some timing issues to think about.
Most of these questions primarily affect women. For a guy, the whole question of when to try for children is a lot easier. Since you make new sperm constantly, there’s really not a lot of concern about “damaged” sperm in your ejaculate after cancer treatment. Once you’re a month or two out from treatment, it’s unlikely that there’s anything wrong with the new swimmers in your semen. And although the first two years after treatment are your time of greatest risk for the cancer’s returning, you’re not going to be the one who’s pregnant—so if it does, you won’t have to choose between starting treatment right away and taking a pregnancy to term.
For women, first there’s the worry about how much, and if, your cancer treatments may have damaged your eggs. That is, what if the egg you conceive with has chromosomal damage from the chemotherapy drugs you’ve taken? It’s true that many chemo drugs can, in fact, wreak havoc on the DNA of a woman’s developing eggs.
There is no research that indicates that women who have undergone chemotherapy have a long-term risk of having a baby with chromosomal abnormalities. But most experts in the field agree that it is best to wait six months to a year after completing chemotherapy before attempting to get pregnant. “That seems to be a sufficiently long period to allow any damaged eggs to clear your system,” says Dr. Oktay. Eggs that have been significantly damaged by chemotherapy usually do not survive within a woman’s reproductive system any longer than that.
There’s another reason to wait a bit after completing cancer treatment of any kind before you try to conceive: the risk of recurrence. Pregnancy itself doesn’t appear to increase the risk of your cancer’s returning (more on that in chapter 6), but most doctors will tell you that cancer survivors are at the greatest risk of having their disease come back during the first two years after treatment—especially if the cancer is one of the more aggressive ones. (Women with hormone-positive breast cancer appear to have a longer window of time during which their risk of recurrence remains relatively high.) If you do become pregnant during this time, and then your disease returns, you have some very difficult decisions to make.
Christina Demosthenous was in a position like this. It wasn’t a recurrence, but her first breast cancer diagnosis. She was thirty-two, and the lump she felt in her breast seemed like nothing. Then, when she got pregnant, her breasts began to change and the lump seemed to disappear. But her obstetrician urged her to get further tests. “Pregnancy and cancer don’t mix,” he said.
Christina was three months pregnant when she was finally diagnosed with breast cancer—a type that was highly sensitive to hormone levels. “I live in New York and I went to see about every doctor in town,” she says. “Nobody said, ‘Don’t worry about it, just have surgery and chemo and it will all be okay.’ They all just said, ‘Ugh, this is bad.’ Two doctors finally looked at me and advised me to terminate the pregnancy. I didn’t care if I died, I wanted this baby more than anything else in the world, but I thought to myself, if it doesn’t turn out good, I would be even more devastated to think I wouldn’t be around for my baby.” Ending her pregnancy, Christina says, was the hardest decision she ever had to make.
Some women may be able to sustain a pregnancy after being diagnosed with cancer—especially if the cancer diagnosis or recurrence comes late in the pregnancy, when you’re closer to the time when an early C-section and immediate treatment might be feasible. Although Carly Chandler, who later adopted from foster care, also found a lump in her breast early on in her second pregnancy, it wasn’t diagnosed as cancer until much later, when she was able to deliver her son early and begin treatment.
Christina actually might have gotten different advice about her original pregnancy if she’d been diagnosed more recently. A new study that came out in 2009 indicates that if the worst happens and you do get diagnosed with breast cancer, or a recurrence, while pregnant, you might not have to end the pregnancy. Researchers at MD Anderson Cancer Center found that there was no difference in the odds of surviving ten years between the women who were not pregnant during or slightly before their diagnosis, and those who were. You shouldn’t start chemotherapy during your first trimester, the researchers said, but when chemo begins in the second or third trimester, babies are just as healthy as those born to mothers without breast cancer.2
Still, you really don’t want to risk being put in that position if you don’t have to. So most experts say it’s best to wait at least two years after completing cancer treatment before becoming pregnant.
On the other hand, as mentioned previously, you don’t want to wait too long. As a cancer survivor, especially if you’ve undergone chemotherapy, the odds are that you will go into menopause earlier than you otherwise would have. So even if your cycles have come back, and you’re fertile now, you may not stay that way as long as you might expect. “In all likelihood, this will shorten your fertile years,” says Dr. Lee.
So you have to strike a balance: take the time to finish treatment and have a couple of “safe” recurrence-free years, but time your efforts so that you’re not just starting to try to conceive at thirty-eight when you might hit early menopause at forty. If you’re thirty-five, two years out of treatment and know you want a child, but it’s not the right time—your husband’s deploying, you’re changing careers, whatever—you might want to consider freezing eggs or embryos now, just in case.
And for a few women, it may be advisable to try to get pregnant sooner than that two-year window. Some young women with early-stage, low-grade endometrial cancers choose to take a conservative approach to treatment—hormonal treatment that leaves their uterus intact—because they do want to bear children and don’t want an immediate hysterectomy. If your doctor agrees with this treatment plan, you might want to start your family sooner rather than later, so that you can then have more definitive surgical treatment as soon as you’re finished having children.
You might be surprised at just how many cancer survivors have gotten pregnant on their own, with no help from technology at all.
Christina Demosthenous was so eager to try again to have a baby, after her heartbreaking experience being diagnosed with cancer in early pregnancy, that she literally kept a calendar counting the days until she and her husband could begin their quest again. Her doctor agreed that she could take a break from Tamoxifen after two years on the drug, and the two-year mark was circled on her calendar in red.
“Then when I went to my oncologist, she said, ‘I told you that?’ ” Christina recalls. Her doctor tried to persuade her to stay on the medication longer, citing its powerful benefits in women who are hormone receptor positive, but Christina was adamant. “I said, I really want to have a baby and I want to have it now.”
She went off Tamoxifen, and waited the three months that doctors advised to let the medication clear out of her system. “I got pregnant the first month we started trying!” she marvels. “We swore it would take forever, but it happened right away. I think we just got the timing right.” In January 2009, she gave birth to her son Plato.
As soon as Christina gave birth, her oncologist handed her a new Tamoxifen prescription. “I couldn’t fill it. I knew I would want another child and I wouldn’t want to wait five years. And it’s not like you can start up and stop again six months later,” she says. “So we’re trying again now. This time, it’s not happening as quickly, but as soon as this baby is born, I’ll go back on Tamoxifen.” So far, she has remained hopeful and cancer-free.
Kristine Schmalenberg, who adopted a son in Kazakhstan, initially elected not to interrupt her Tamoxifen to try to get pregnant. But as she neared the four-year mark, she decided to take the leap. “I went off the drug at four years, without talking to my oncologist,” she confesses. “I didn’t want her to tell me no!” Like Christina Demosthenous, she waited a few months for the drug to leave her system, then started trying to conceive. At thirty-six, four years after undergoing chemotherapy known to be toxic to fertility, it took her just three months to become pregnant. “We weren’t really optimistic and were prepared for it to take a lot longer, so we were thrilled when it happened so soon!” she says. Today, older son Max is five and little brother Bennett is three.
Even Lindsay Nohr Beck, who froze eggs before chemotherapy for tongue cancer, then used IVF with preimplantation genetic diagnosis to get pregnant with her daughter after learning of the genetic abnormality that her husband could pass along, ended up having her second child without any assistance at all.
“We had gone through a couple of IVF cycles to try to get pregnant again, and I miscarried,” she says. “So we decided to take the summer off from the IVF roller coaster, and I got pregnant accidentally.” She thought she’d miscarry again—her husband’s balanced translocation had led to a series of miscarriages before they discovered the problem. “At every appointment, I’d expect that there would be no sac or no heartbeat, that we’d have a tough decision to make. But at each test, the news was great. Our son Walker is one in a million.”
Of course, Lindsay was twenty-nine when she had her daughter through IVF, and in her early thirties when she had Walker. But even if you’re old enough to remember the Carter administration, that doesn’t necessarily mean there’s no hope at all of getting pregnant.
I was forty when my husband and I decided to start trying to conceive. We had adopted our beautiful daughter less than two years earlier, but the agency we had used for her adoption was reputed to be having some problems. (They later shut down.) We were nervous about working with them again and at the same time daunted by the prospect of researching more agencies and trying to find one we could trust. Then I said to my husband, “You know, no one ever told us I couldn’t get pregnant. We just assumed I wouldn’t be able to.”
By then, I was more than two years past my initial treatment, and the cancer hadn’t reared its ugly head. We hadn’t been actively trying to prevent a pregnancy, but we hadn’t been taking a very systematic approach to conceive one, either. So we decided that, while we researched new agencies, we might as well try really really hard to get pregnant. For us, that meant first taking a home fertility test to reassure me that it was worth getting all excited about. I took the only test then on the market, Fertell, fully expecting it to not only show that I had fertility problems, but to actually sit up on the back of the toilet tank and point and laugh at me. I was forty years old and a cancer survivor, after all.
It didn’t. It said things were clear for takeoff. In our next nod to technology, we bought the Clearblue Easy Fertility Monitor—the fancy schmancy digital doodad that takes readings of your first morning’s pee and tells you not only when you’re about to ovulate, but alerts you on the days when you’re getting ready to ovulate, days when you’re also increasingly fertile and should make plenty of time for “baby dancing.”
The first month we used it, the Clearblue Monitor started telling me I was in my “high” fertility phase at about day ten of my cycle. We dutifully began hitting the sheets at every opportunity. I kept waiting for the little test window to show a tiny digital egg, the sign that I was about to ovulate—but it never did. From cycle day ten to cycle day twenty-four or so, I just kept getting high readings. We were getting a bit tired, but we kept up our marathon. Eventually, the reading just dropped back down to low again, and I figured I either hadn’t ovulated that month, or the machine just didn’t “get” me yet. (It’s supposed to learn the fluctuations of your menstrual cycle the longer you use it.)
Dejected, we thought we’d try again next month. But we didn’t have to. A day or so before my next period was due, I couldn’t resist taking a home pregnancy test. A few minutes later, I stumbled out of the bathroom in the predawn light, waving the stick in Evan’s face, yelping “Is that a line? I think it’s a line!!” It was … and nine mostly uneventful months later, six weeks before I turned forty-one, that line turned into our beautiful, six-pound, three-ounce son Adrian.
When Adrian was about eighteen months old, and his big sister three, we decided that maybe we weren’t quite done yet. That time, it took two months of trying (and the help of the good old Clearblue Easy Fertility monitor again) for me to get pregnant with our daughter, Katia. I was forty-three when she was born on June 17, 2010—seven pounds, ten ounces of gorgeous perfection.
To be fair, not everyone’s postcancer pregnancy goes entirely smoothly—although the outcomes can be just as joyful. Terri Turner had adopted a daughter from Colombia in 2007, six years after being diagnosed with breast cancer at the age of twenty-nine. She and her husband were in the process of filling out the paperwork to adopt again when they decide to try to get pregnant on their own. Terri was worried about recurrence, but she knew her husband really wanted to try for a biological child.
“I was scared out of my mind, not trusting my body. As it turned out, it was the world’s most harrowing pregnancy, like an eight-month plane crash,” she says. “The whole time, I was thinking, why the bleep did I not adopt again? It turned out that my son had a lump on the umbilical cord that was constricting blood flow, so the poor little guy was just starving for eight months. I’d do kick counts constantly and if I didn’t feel him, I’d rush in, thinking he was dying. They don’t know why it happened. I made it to thirty-six weeks and a scheduled C-section, and Nikolai was born at three pounds, five ounces. He was a tiny, scary-skinny little chicken. Now he’s big and beautiful and fabulous.”
In some cases, cancer survivors might want to use assisted reproduction to become pregnant even if they aren’t necessarily having any fertility problems. For example, doctors may recommend that young women who’ve had conservative treatment (hormones only, no hysterectomy) for early-stage endometrial cancer consider using IVF to help them become pregnant as soon as possible. That way, they can complete their family more quickly and undergo a hysterectomy, which offers more definitive protection against the return of endometrial cancer.
And while most cancers are not inherited, some are. For example, if you have a BRCA1 or BRCA2 genetic mutation, which confers a drastically heightened risk for breast cancer and ovarian cancer, you have a fifty-fifty chance of passing it on to your daughters. For that reason, some women with these mutations choose to plan their families using IVF with preimplantation genetic diagnosis (PGD). This means that during the IVF process, one cell is removed from each fertilized embryo and tested for the BRCA mutation. That way, only embryos that don’t carry the cancer-causing mutation can be implanted. When you’ve seen sisters, mothers, aunts, and cousins face breast cancer and perhaps die from it, it’s understandable to want to spare your daughters the same fate.
Or you simply may not have had the opportunity to try to preserve eggs, embryos, or sperm prior to cancer treatment. Maybe your doctor didn’t mention it to you, or maybe it was all just too overwhelming at the time. But now, two years or five years or ten years down the road, you’re hoping that there might still be a chance that you’re fertile, and you want to try to become pregnant or father a child.
It could be possible. Men have pretty much no way of knowing if there is functional semen in their sperm without testing, but for women there are more signs. If you stopped having menstrual periods entirely after your cancer treatment, and they never came back, the odds are slim. But as long as you’re not in total menopause, with no ovarian function left at all, it’s entirely possible that you might still have some eggs left. You may not be able to get pregnant on your own, but with the help of fertility treatments, it could be a possibility. Similarly, men who are unsure of whether or not they still might be fertile after cancer treatment should consult a fertility specialist. You could be like Lance Armstrong and father a child spontaneously more than a decade after you thought your sperm were wiped out!
If you’re able to, your best bet for fertility treatments that take into account your unique circumstances as a cancer survivor is to go to a fertility program that is in some way affiliated with a cancer center (part of the same medical center, for example) or has an oncofertility specialty. You can find a program like this through organizations like Fertile Hope/Livestrong and the Oncofertility Consortium (see Resources). Staff at such programs will be a lot more knowledgeable about issues such as whether or not specific fertility medications—in particular, those that raise the estrogen levels in your body—might raise your risk of recurrence, and what other options you might have. Look back at chapter 2 for further information about some of the fertility treatments you might undergo at one of these programs.
If getting pregnant on your own still isn’t an option, there are other avenues to consider. Some cancer survivors have successfully built their families using egg donors or surrogates, and you’ll read more about those options in the next chapter.