September was Pediatric Cancer Awareness month, a cause that resonates personally with many Growing Generations team members and clients. As an organization on a mission to build families, we couldn’t help but consider the impact pediatric cancer and treatment can have on forming a family. When a child is diagnosed with cancer, parents and doctors face a difficult task in determining the best course of life-saving treatment. It’s easy to see how preserving fertility, while important, may not be the first thing on a parent’s mind. We’re here to discuss the future well-being of childhood cancer survivors with regard to their fertility.
Growing Generations works closely with fertility doctors who understand the importance of this topic. One, Dr. Gad Lavy from New England Fertility, was kind enough to talk with us about the ability to preserve a child’s gametes (egg and sperm) and safeguard their personal choice to have children of their own one day. Nowadays, outcomes for treating childhood cancer are often positive, but it is important to consider the toll these treatments may take on a child’s ability to reproduce. Or, as Dr. Lavy tells us:
Most cancer therapy is likely to affect the ovary and testicle and reduce or obliterate function. Preservation of gonadal (ovaries and testes) function should be a priority in the long-term health of cancer survivors. The gonads produce gametes (eggs and sperm) as well as hormones that are important to the well-being of the child and adult. In many cases, especially when a cancer diagnosis is made, the priority of delivering life-saving measures often takes center stage and overshadows the concern about fertility and hormone function and proper counseling is not provided. It is therefore of extreme importance for parents to seek advice about this issue when their child/young adult is faced with this diagnosis.
In our Q&A below Dr. Lavy shares his open and honest thoughts about preserving fertility (gametes) and what families may encounter during the process. We hope the information provided can serve as a resource for parents facing this tough conversation about their child’s future.
What are some reasons a pediatric patient may need fertility preservation options? And at what age can they begin exploring them?
The most common reason for exploring fertility preservation in children and young adults is a diagnosis of systemic cancer, such as leukemia. The disease [is] usually widespread and involves almost all organs. The treatment is therefore also systemic and meant to target the cancer cells wherever they are. The treatments (chemotherapy or radiation) target cells that are rapidly growing and are effective against cancer cells. However, the ovary and the testicle are particularly sensitive to these treatments.
Preventing damage from radiation is ideal but not always possible; it involves shielding the sensitive organ (testis or ovary). When using systemic chemotherapy, options are more limited. Efforts are being made to develop and use drugs that are not harmful to the reproductive organs.
The options available for fertility preservation prior to initiating the potentially damaging treatment are effective in young adults who have completed puberty. Sperm and eggs can be harvested from the ovary and testicle and frozen for future use. The option available for pre-pubertal boys are girls are more limited and considered experimental. Both involve invasive procedures, freezing sections of testicle and ovaries, and do not have a proven track record.
What are the most important considerations for parents who are considering fertility preservation for their children?
Parents should learn about the options available for their children, which are not always common knowledge. The diagnosis for cancer usually comes as a complete shock and the focus is on life-saving measures. In most cases, there is enough time to consider fertility preservation prior to initiating treatment. Most fertility specialists are very receptive to those in immediate need for advice as well as treatment.
What advice can you offer to parents on how to have conversations about fertility preservation/family planning with their child?
The diagnosis of cancer is often more difficult for the parents than the child who [may] not completely understand the meaning and implications. The parents should do their best to educate themselves by seeking the advice of the treating physician as well as a fertility specialist. They will then be in a better position to discuss the plan with their children. In many cases, and depending on the family dynamics, it may be helpful to consult with a mental health professional who can advise.
Is preservation the same, no matter why your child/teen needs to do it? Or do preservation options vary depending on the reasoning? (i.e.: cancer diagnosis versus other medical issues, etc.)
Fertility preservation is needed whenever a disease, condition, or its treatment may affect ovarian or testicular function. In most cases, the cause is cancer. However, there are other conditions that can cause the ovaries and the testicle to become depleted of eggs and sperm in childhood or during the teen years. In all cases, the approach is the same: save some gametes (sperm or eggs) for later use. The process involves obtaining the sample and freezing it. The recent advancements in freezing of sperm and eggs allow us to maintain viability over extended periods of time. The freezing generally does not affect the viability of the cells.
In young adults where testicular or ovarian activity has begun, retrieval and freezing of sperm and eggs is possible and highly effective. In younger children, the only options are removing and freezing a section of ovary or testicle. Current technology does not allow for reliably obtaining fertile eggs and sperm from the tissue. There is, of course, the possibility that this technology will become available when the cells are needed. Counseling should be provided about these options as they involve invasive procedures.
If a patient is under 18, who typically has “custody” of the sperm or eggs that are preserved? What about if the child/teen is deceased?
As with other medical decisions, the parents are the custodians of their minor children. Under the age of 18, the parents are responsible for all medical decisions. It will follow that any reproductive tissue retrieved from a minor is their property but under the custody of their parents.
The issue of informed consent in these situations is complex and not completely resolved. Some authorities, like The British Embryology Authority, recommend against parents signing for storage of reproductive tissue of their children.
In general, the parents will need to sign the consent for a minor child. However, the consent should only include the removal and storage of the tissue. A separate consent will be required once the tissue is to be used. That consent will be signed by the child who will be an adult by then. The consent should also include a provision as to the ownership of the tissue if the child is deceased.
What would a typical cost range look like for this process? Are these treatments ever covered by insurance?
The cost of sperm freezing is substantially less than the procedure required for freezing eggs. The procedures for testicular tissue preservation are invasive and expensive, as is the process to retrieve ovarian tissue. Insurance companies are often reluctant to cover procedures they deem ‘experimental’. The final decision is with the insurance company.
While it’s a situation we’d rather parents not have to encounter, we’re hopeful that outcomes for youth battling cancer will continue to improve. Through careful planning and assisted reproductive technology, many survivors can now choose to build families of their own despite the effects of cancer treatment.
Thank you to Dr. Gad Lavy for shedding light on what’s possible.
Additional resources on this important topic can be found at:
- Leukemia and Lymphoma Society
- Cancer.Net: Doctor-Approved Patient Information from ASCO
- Alliance for Fertility Preservation
- LIVESTRONG: Adolescents and Young Adults
- Critical Mass: The Young Adult Cancer Alliance
- American Society of Clinical Oncology (www.asco.org)
