Ten years ago, the idea of having children after cancer would not have been thought of at all. Today, due to the impressive rise in cancer survivors, this is an issue that women increasingly want addressed.

The ability to easily preserve male sperm prior to cancer treatment has provided hope at the time of diagnosis and families later in life.

However, women and girls faced with a cancer diagnosis have lacked the fertility preservation options that men were given. Loss of ovarian function in young women can cause several secondary health problems, including increased risk for cardiovascular disease and osteoporosis.

But beyond the physical challenges, loss of ovarian functioning can alter a woman's confidence in relationships, her ability to reach desired family and financial plans, and may even alter her feelings of femininity and sense of self.

Now, thousands of women have been provided fertility options, and babies have been born to healthy mothers who have fought cancer and now face a future that includes family.

As survival rates have increased for young people diagnosed with cancer, so has the need for clinicians to talk with patients and families about how cancer and its treatment can affect fertility.

In 2006, Teresa K. Woodruff, Ph.D., of the Department of Obstetrics and Gynecology at Northwestern University, coined the term “oncofertility” to refer to a new field of medicine that connects oncology with reproductive health. Dr. Woodruff founded and serves as director of the Oncofertility Consortium, an interdisciplinary network focused on health care and quality-of-life issues among young cancer patients, particularly issues around fertility after cancer.

In November 2019, the Oncofertility Consortium held its annual meeting in Chicago. The consortium was started with an NIH grant, and the annual meeting is supported in part by NIH. Here, Dr. Woodruff discusses highlights of the meeting and the evolution of the field of oncofertility.

What is the difference between “oncofertility” and “fertility preservation”?

We find it important to use the term “oncofertility” because oncologists often don’t see themselves as fertility specialists. When we coined the term, I think it allowed for more of the cancer community to understand that this is a collaborative discipline where oncologists need to be actively involved in, but don’t have to understand, all of the fertility management strategies, and fertility doctors don’t have to understand all of the oncology side.

When this field got started, there was no good way for patients to bridge between their cancer- and fertility-care providers, the way we do for other providers. For example, a woman might go from a breast cancer surgeon to a plastic surgeon and back again. The field of oncofertility was created to address that and other challenges.

There are plenty of [in vitro fertilization] fertility centers for the general population, but if a cancer patient calls about fertility preservation, they could be put in a queue for 6 months. In an oncofertility consultation, you are an urgent case and providers have to think about a whole different set of ways to help you navigate care. It sets off the need to talk with the oncologist, to understand what the care plan is, and then to tailor the fertility intervention accordingly.

Can you provide some background on the Oncofertility Consortium?

The Oncofertility Consortium was founded to develop strategies for multiple disciplines to come together for the urgent and unmet need of addressing fertility issues among young cancer patients.

[The consortium] is kind of this corridor of communication between people who may not have had to manage fertility for cancer patients before. For example, we connect oncologists with reproductive endocrinologists because young cancer patients who lose ovarian or testicular [tissue] are not just possibly going to be infertile, they are losing hormones that could lead to bone health concerns, or they could go into a profound and early menopause. Even males, when they lose testosterone, go through a profound menopause-like state and have hot flashes.

So, we really try to think not only about fertility, but also about things like hormone health and management for young people and, overall, in a [big-picture] way about how to help a patient with cancer achieve and maintain good reproductive function.

What happens at the Oncofertility Consortium’s annual meeting?

It’s almost a lab meeting in some ways. It’s not like a traditional meeting where you’re hearing from the super luminaries of the world. We’re hearing from the people in practice who are really working every day to develop strategies for patient care.

At our meeting this year, we had 250 participants from about 20 different countries. We had oncologists, endocrinologists, urologists, pediatric and adolescent health specialists, social workers, and nurse navigators. We had patients and parents and partners and grandparents, we had advocates, we had scientists. We basically have what I call “360 degrees of care” represented at this meeting.

I think one of the key reasons why this meeting continues to be so successful and to grow is because it puts “boots and heels on the ground,” making sure that fertility management is part of the equation [in cancer care].

Oncofertility Resources

The Oncofertility Consortium offers a web portal for providers with information on fertility management options, and its website has a resource to help patients locate fertility clinics. The group also provides a helpline for patients ("the "Fertline") and access to a patient navigator who can help patients and families make a fertility preservation plan.

How has the annual meeting evolved over the years?

It’s evolved to involve a broader and broader constituency group and broader and broader themes. At the very beginning, it was really just oncofertility practice, how you develop it, and largely for adults [with cancer]. Over time, it’s moved toward pediatrics.

It’s also moved from initially just trying to establish the field … to now addressing a wide range of issues faced by those working in this area. This year, for example, we discussed the insurance reimbursement legislation that several states across the United States have passed that compel insurers to cover fertility preservation procedures for cancer patients and others who are facing potential infertility due to medical treatment. We had a great report from Joyce Reinecke [executive director of the Alliance for Fertility Preservation] on all the exceptional legislative and advocacy work that’s happening.

If you had told me in 2006 that, by 2019, we’d have eight or nine states passing legislation to require insurers cover oncofertility services, I would have said, well that’s just too fast, how could that happen? Each year it really continues to blow our minds—those of us who’ve been here this whole time.

The other part of this meeting is that the majority of attendees are new to the meeting each year. These are folks who are trying to set up their oncofertility practices, who are new to learning how to enable a navigator to work between oncology and fertility. So, we are constantly balancing the needs of someone who is brand new to this discipline, and needs the nuts and bolts and fundamentals, with those of people who have seen the discipline develop over time.

What are some of the highlights from this year’s meeting?

This year we highlighted pediatric oncofertility. There were a lot of great discussions about how to get information to the parent.

When children are diagnosed with cancer and their parents are learning about cancer treatment, they are really thinking about the survival of their kids and are making a lot of complex decisions about their kids’ future health. One of the factors that they can now integrate into a discussion of treatment approaches and their effect is the future fertility of their child.

We also talked about how patient consent for therapies to preserve fertility needs to happen and what the best practices need to be. There was some discussion about what’s on the horizon, both in terms of changes in radiation therapy for pediatrics as well as the potential of new therapies to protect fertility.

Two keynote speakers addressed the ethical issues of fertility management. Some of that has to do with ensuring that parents of pediatric and adolescent patients have information about the kinds of procedures now and after they recover from cancer and are ready for a family; those were very dynamic discussions. Issues of ethics, religion, and the law have been part of the Oncofertility Consortium since the very first meeting, and so we continue to ensure that we include those kinds of deliberative topics as part of the discussion.

What are the biggest challenges patients and practitioners still have in oncofertility?

The biggest challenge is getting more clinicians to adhere to [ASCO] guidelines that call for them to initiate discussions with their younger patients about fertility preservation. The reason the guidelines are not adhered to … it’s not that practitioners are negative or antithetical to it, it’s just that they may not have an easy route for referral or the confidence in how their patients should be managed.

I think the most important thing the Oncofertility Consortium does is help create the structure that ultimately provides greater access to fertility management for more and more cancer patients across the nation.

Many cancer treatments can affect a girl’s or woman’s fertility. Most likely, your doctor will talk with you about whether or not cancer treatment may increase the risk of, or cause, infertility. However, not all doctors bring up this topic. Sometimes you, a family member, or parents of a child being treated for cancer may need to initiate this conversation.

Whether or not fertility is affected depends on factors such as:

• your baseline fertility
• your age at the time of treatment
• the type of cancer and treatment(s)
• the amount (dose) of treatment
• the length (duration) of treatment
• the amount of time that has passed since cancer treatment
• other personal health factors

It’s important to learn how the recommended cancer treatment may affect fertility before starting treatment, whenever possible. Consider asking questions such as:

• Could treatment increase the risk of, or cause, infertility? Could treatment make it difficult to become pregnant or carry a pregnancy in the future?
• Are there other recommended cancer treatments that might not cause fertility problems?
• Which fertility option(s) would you advise for me?
• What fertility preservation options are available at this hospital? At a fertility clinic?
• Would you recommend a fertility specialist (such as a reproductive endocrinologist) who I could talk with to learn more?
• Is condom use advised, based on the treatment I’m receiving?
• Is birth control recommended?
• After treatment, what are the chances that my fertility will return? How long might it take for my fertility to return?

Cancer Treatments May Affect Your Fertility

Cancer treatments are important for your future health, but they may harm reproductive organs and glands that control fertility. Changes to your fertility may be temporary or permanent. Talk with your health care team to learn what to expect, based on your treatment(s):

• Chemotherapy (especially alkylating agents) can affect the ovaries, causing them to stop releasing eggs and estrogen. This is called primary ovarian insufficiency (POI). Sometimes POI is temporary and your menstrual periods and fertility return after treatment. Other times, damage to your ovaries is permanent and fertility doesn’t return. You may have hot flashes, night sweats, irritability, vaginal dryness, and irregular or no menstrual periods. Chemotherapy can also lower the number of healthy eggs in the ovaries. Women who are closer to the age of natural menopause may have a greater risk of infertility. The National Institute for Child Health and Human Development (NICHD) has more information about primary ovarian insufficiency.
• Radiation therapy to or near the abdomen, pelvis, or spine can harm nearby reproductive organs. Some organs, such as the ovaries, can often be protected by ovarian shielding or by oophoropexy—a procedure that surgically moves the ovaries away from the radiation area. Radiation therapy to the brain can also harm the pituitary gland. This gland is important because it sends signals to the ovaries to make hormones such as estrogen that are needed for ovulation. The amount of radiation given and the part of your body being treated both play a role in whether or not fertility is affected.
• Surgery for cancers of the reproductive system and for cancers in the pelvis region can harm nearby reproductive tissues and cause scarring, which can affect your fertility. The size and location of the tumor are important factors in whether or not fertility is affected.
• Hormone therapy (also called endocrine therapy) used to treat cancer can disrupt the menstrual cycle, which may affect your fertility. Side effects depend on the specific hormones used and may include hot flashes, night sweats, and vaginal dryness.
• Bone marrow transplants, peripheral blood stem cell transplants, and other stem cell transplants involve receiving high doses of chemotherapy and/or radiation. These treatments can damage the ovaries and may cause infertility.
• Other treatments: Talk with your doctor to learn whether or not other types of treatment such as immunotherapy and targeted cancer therapy may affect your fertility.

Emotional Considerations and Support for Fertility Issues

For some women, infertility can be one of the most difficult and upsetting long-term effects of cancer treatment. While it might feel overwhelming to think about your fertility right now, most people benefit from having talked with their doctor (or their child’s doctor, when a child is being treated for cancer) about how treatment may affect their fertility and about options to preserve fertility.

Although most people want to have children at some point in their life, families can come together in many ways. For extra support during this time, reach out to your health care team with questions or concerns, as well as to professionally led support groups.

Fertility Preservation Options for Girls and Women

Women and girls with cancer have options to preserve their fertility. These procedures may be available at the hospital where you are receiving cancer treatment or at a fertility preservation clinic.

Talk with your doctor about the best option(s) for you based on your age, the type of cancer you have, and the specific treatment(s) you will be receiving. The success rate, financial cost, and availability of these procedures varies.

• Egg freezing (also called egg or oocyte cryopreservation) is a procedure in which eggs are removed from the ovary and frozen. Later the eggs can be thawed, fertilized with sperm in the lab to form embryos, and placed in a woman’s uterus. Egg freezing is a newer procedure than embryo freezing.
• Embryo freezing (also called embryo banking or embryo cryopreservation) is a procedure in which eggs are removed from the ovary. They are then fertilized with sperm in the lab to form embryos and frozen for future use.
• Ovarian shielding (also called gonadal shielding) is a procedure in which a protective cover is placed on the outside of the body, over the ovaries and other parts of the reproductive system, to shield them from scatter radiation.
• Ovarian tissue freezing (also called ovarian tissue cryopreservation) is still considered an experimental procedure, for young girls who haven’t gone through puberty and don’t have mature eggs. It involves surgically removing part or all of an ovary and then freezing the ovarian tissue, which contains eggs. Later, the tissue is thawed and placed back in a woman. Although pregnancies have occurred as a result of this procedure, it’s only an option for some types of cancer.
• Ovarian transposition (also called oophoropexy) is an operation to move the ovaries away from the part of the body receiving radiation. This procedure may be done during surgery to remove the cancer or through laparoscopic surgery.
• Radical trachelectomy (also called radical cervicectomy) is surgery used to treat women with early-stage cervical cancer who would like to have children. This operation removes the cervix, nearby lymph nodes, and the upper part of the vagina. The uterus is then attached to the remaining part of the vagina, with a special band that serves as the cervix.
• Treatment with gonadotropin-releasing hormone agonist (also called GnRHa), a substance that causes the ovaries to stop making estrogen and progesterone. Research is ongoing to assess the effectiveness of giving GnRHa to protect the ovaries.

If you choose to take steps to preserve your fertility, your doctor and a fertility specialist will work together to develop a treatment plan that includes fertility preservation, whenever possible.

Many cancer treatments can affect a boy’s or a man’s fertility. Most likely, your doctor will talk with you about whether or not cancer treatment may lower fertility or cause infertility. However, not all doctors bring up this topic. Sometimes you, a family member, or parents of a child being treated for cancer may need to initiate this conversation.

Whether or not your fertility is affected depends on factors such as:

• your baseline fertility
• your age at the time of treatment
• the type of cancer and treatment(s)
• the amount (dose) of treatment
• the length (duration) of treatment
• the amount of time that has passed since treatment
• other personal health factors

It’s important to learn how the recommended cancer treatment may affect fertility before starting treatment if at all possible. Consider asking questions such as:

• Could treatment increase the risk of, or cause, infertility?
• Are there other recommended cancer treatments that might not cause fertility problems?
• Which fertility preservation options would you advise for me?
• What fertility preservation options are available at this hospital? At a fertility clinic?
• Would you recommend a fertility specialist (such as a reproductive endocrinologist) that I could talk with to learn more?
• Is condom use advised, based on the treatment I’m receiving?
• Is birth control also recommended?
• What are the chances that my fertility will return after treatment?

Cancer Treatments May Affect Your Fertility

Cancer treatments are important for your future health, but they may harm reproductive organs and glands that control fertility. Changes to your fertility may be temporary or permanent. Talk with your healthcare team to learn what to expect based on your treatment(s):

• Chemotherapy (especially alkylating drugs) can damage sperm in men and sperm-forming cells (germ cells) in young boys.
• Hormone therapy (also called endocrine therapy) can decrease the production of sperm.
• Radiation therapy to the reproductive organs as well as radiation near the abdomen, pelvis, or spine may lower sperm counts and testosterone levels, causing infertility. Radiation may also destroy sperm cells and the stem cells that make sperm. Radiation therapy to the brain can damage the pituitary gland and decrease the production of testosterone and sperm. For some types of cancers, the testicles can be protected from radiation through a procedure called testicular shielding.
• Surgery for cancers of the reproductive organs and for pelvic cancers (such as bladder, colon, prostate, and rectal cancer) can damage these organs and/or nearby nerves or lymph nodes in the pelvis, leading to infertility.
• Stem cell transplants such as bone marrow transplants and peripheral blood stem cell transplants, involve receiving high doses of chemotherapy and/or radiation. These treatments can damage sperm and sperm-forming cells.
• Other treatments: Talk with your doctor to learn whether or not other types of treatment, such as immunotherapy and targeted cancer therapy, may affect your fertility.

Emotional Considerations and Support for Fertility Issues

For some men, infertility can be one of the most difficult and upsetting long-term effects of cancer treatment. Although it might feel overwhelming to think about your fertility right now, most people benefit from having talked with their doctor (or their child’s doctor, when a child is being treated for cancer) about how treatment may affect their fertility and learning about options to preserve their fertility.

Although most people want to have children at some point in their life, families can come together in many ways. For extra support during this time, reach out to your health care team with questions or concerns, as well as to professionally led support groups.

Fertility Preservation Options for Boys and Men

Men and boys with cancer have options to preserve their fertility. These procedures may be available at the hospital where you are receiving cancer treatment or at a fertility preservation clinic.

Talk with your doctor about the best option(s) for you based on your age, the type of cancer you have, and the specific treatment(s) you will be receiving. The success rate, financial cost, and availability of these procedures varies.

• Sperm banking (also called semen cryopreservation) is the most common and easy option for young men of reproductive age who would like to have children one day. Samples of semen are collected and checked under a microscope in the laboratory. The sperm are then frozen and stored (banked) for the future. Sperm can be frozen for an indefinite amount of time.
• Testicular shielding (also called gonadal shielding) is a procedure in which a protective cover is placed on the outside of the body to shield the testicles from scatter radiation to the pelvis when other parts of the body are being treated with radiation.
• Testicular sperm extraction (TESE) is a procedure for males who are not able to produce a semen sample. Sperm is collected through a medical procedure and frozen for future use.
• Testicular tissue freezing (also called testicular tissue cryopreservation) is still considered an experimental procedure at most hospitals. For boys who have not gone through puberty and are at high risk of infertility, this procedure may be an option.

If you choose to take steps to preserve your fertility, your doctor and a fertility specialist will work together to develop a treatment plan that includes fertility preservation procedures whenever possible.

December 23, 2019, by NCI Staff

As survival rates have increased for young people diagnosed with cancer, so has the need for clinicians to talk with patients and families about how cancer and its treatment can affect fertility.

In 2006, Teresa K. Woodruff, Ph.D., of the Department of Obstetrics and Gynecology at Northwestern University, coined the term “oncofertility” to refer to a new field of medicine that connects oncology with reproductive health. Dr. Woodruff founded and serves as director of the Oncofertility Consortium, an interdisciplinary network focused on health care and quality-of-life issues among young cancer patients, particularly issues around fertility after cancer.

In November 2019, the Oncofertility Consortium held its annual meeting in Chicago. The consortium was started with an NIH grant, and the annual meeting is supported in part by NIH. Here, Dr. Woodruff discusses highlights of the meeting and the evolution of the field of oncofertility.

What is the difference between “oncofertility” and “fertility preservation”?

We find it important to use the term “oncofertility” because oncologists often don’t see themselves as fertility specialists. When we coined the term, I think it allowed for more of the cancer community to understand that this is a collaborative discipline where oncologists need to be actively involved in, but don’t have to understand, all of the fertility management strategies, and fertility doctors don’t have to understand all of the oncology side.

When this field got started, there was no good way for patients to bridge between their cancer- and fertility-care providers, the way we do for other providers. For example, a woman might go from a breast cancer surgeon to a plastic surgeon and back again. The field of oncofertility was created to address that and other challenges.

There are plenty of [in vitro fertilization] fertility centers for the general population, but if a cancer patient calls about fertility preservation, they could be put in a queue for 6 months. In an oncofertility consultation, you are an urgent case and providers have to think about a whole different set of ways to help you navigate care. It sets off the need to talk with the oncologist, to understand what the care plan is, and then to tailor the fertility intervention accordingly.

Can you provide some background on the Oncofertility Consortium?

The Oncofertility Consortium was founded to develop strategies for multiple disciplines to come together for the urgent and unmet need of addressing fertility issues among young cancer patients.

[The consortium] is kind of this corridor of communication between people who may not have had to manage fertility for cancer patients before. For example, we connect oncologists with reproductive endocrinologists because young cancer patients who lose ovarian or testicular [tissue] are not just possibly going to be infertile, they are losing hormones that could lead to bone health concerns, or they could go into a profound and early menopause. Even males, when they lose testosterone, go through a profound menopause-like state and have hot flashes.

So, we really try to think not only about fertility, but also about things like hormone health and management for young people and, overall, in a [big-picture] way about how to help a patient with cancer achieve and maintain good reproductive function.

What happens at the Oncofertility Consortium’s annual meeting?

It’s almost a lab meeting in some ways. It’s not like a traditional meeting where you’re hearing from the super luminaries of the world. We’re hearing from the people in practice who are really working every day to develop strategies for patient care.

At our meeting this year, we had 250 participants from about 20 different countries. We had oncologists, endocrinologists, urologists, pediatric and adolescent health specialists, social workers, and nurse navigators. We had patients and parents and partners and grandparents, we had advocates, we had scientists. We basically have what I call “360 degrees of care” represented at this meeting.

I think one of the key reasons why this meeting continues to be so successful and to grow is because it puts “boots and heels on the ground,” making sure that fertility management is part of the equation [in cancer care].

How has the annual meeting evolved over the years?

It’s evolved to involve a broader and broader constituency group and broader and broader themes. At the very beginning, it was really just oncofertility practice, how you develop it, and largely for adults [with cancer]. Over time, it’s moved toward pediatrics.

It’s also moved from initially just trying to establish the field … to now addressing a wide range of issues faced by those working in this area. This year, for example, we discussed the insurance reimbursement legislation that several states across the United States have passed that compel insurers to cover fertility preservation procedures for cancer patients and others who are facing potential infertility due to medical treatment. We had a great report from Joyce Reinecke [executive director of the Alliance for Fertility Preservation] on all the exceptional legislative and advocacy work that’s happening.

If you had told me in 2006 that, by 2019, we’d have eight or nine states passing legislation to require insurers cover oncofertility services, I would have said, well that’s just too fast, how could that happen? Each year it really continues to blow our minds—those of us who’ve been here this whole time.

The other part of this meeting is that the majority of attendees are new to the meeting each year. These are folks who are trying to set up their oncofertility practices, who are new to learning how to enable a navigator to work between oncology and fertility. So, we are constantly balancing the needs of someone who is brand new to this discipline, and needs the nuts and bolts and fundamentals, with those of people who have seen the discipline develop over time.

What are some of the highlights from this year’s meeting?

This year we highlighted pediatric oncofertility. There were a lot of great discussions about how to get information to the parent.

When children are diagnosed with cancer and their parents are learning about cancer treatment, they are really thinking about the survival of their kids and are making a lot of complex decisions about their kids’ future health. One of the factors that they can now integrate into a discussion of treatment approaches and their effect is the future fertility of their child.

We also talked about how patient consent for therapies to preserve fertility needs to happen and what the best practices need to be. There was some discussion about what’s on the horizon, both in terms of changes in radiation therapy for pediatrics as well as the potential of new therapies to protect fertility.

Two keynote speakers addressed the ethical issues of fertility management. Some of that has to do with ensuring that parents of pediatric and adolescent patients have information about the kinds of procedures now and after they recover from cancer and are ready for a family; those were very dynamic discussions. Issues of ethics, religion, and the law have been part of the Oncofertility Consortium since the very first meeting, and so we continue to ensure that we include those kinds of deliberative topics as part of the discussion.

What are the biggest challenges patients and practitioners still have in oncofertility?

The biggest challenge is getting more clinicians to adhere to [ASCO] guidelines that call for them to initiate discussions with their younger patients about fertility preservation. The reason the guidelines are not adhered to … it’s not that practitioners are negative or antithetical to it, it’s just that they may not have an easy route for referral or the confidence in how their patients should be managed.

I think the most important thing the Oncofertility Consortium does is help create the structure that ultimately provides greater access to fertility management for more and more cancer patients across the nation.