What You Should Know
- Fertility and family planning are central to the lives of many people diagnosed with glioma during the childbearing years of their life.
- Treatments like vorasidenib, temozolomide, and radiation offer meaningful control over the tumor, but they can also impact family planning.
- Egg freezing for women and sperm banking for men are current opportunities to preserve the ability to have children in the future.
“We should be asking patients more about what their plans are for childbearing, what they’d like to do, and start getting that process rolling,” says Dr. Akanksha Sharma, a Neuro-oncologist at Sutter House California Pacific Medical Center in San Francisco, California. “Our information is that all treatments, including IDH inhibitors, temozolomide, or radiation, all of that might have some impact on the future in terms of fertility and also in terms of genetic risk to the fetus.”
More On Glioma Treatment
- Glioma Treatment Options: How Doctors Decide What’s Next
- Glioma Treatment: Deciding Between Proton and Photon Radiation
- Fighting Fatigue During Glioma Treatment
- After Treatment, The Importance of Monitoring For Glioma Recurrence
- Decoding Glioma Diagnosis: How Molecular Profiling Guides Treatment and Prognosis
How Glioma Treatments Affect Fertility
Read More- Temozolomide (oral chemotherapy)
- Radiation therapy
Studies show that up to 25–40% of patients treated with cranial radiation develop some level of pituitary hormone deficiency within years of treatment (Endocrine Society guidance).
- Vorasidenib (IDH inhibitor)
Data on human pregnancy risk is limited because pregnant women were excluded from trials. Animal studies suggest risk of fetal harm, which is why prescribing guidelines require effective contraception during treatment and for at least 1 month after stopping the drug. Long-term fertility effects are still unknown
- Early Fertility Counseling
In some cases, a patient starts vorasidenib or temozolomide believing they are simply managing their tumor, only to find out months later that they cannot safely conceive while taking the drug. Additionally, stopping the medication to pursue pregnancy isn’t medically advisable. In others, the patient is suddenly facing the emotional shock of decisions they didn’t know they needed to consider.
“By avoiding or delaying these conversations, we actually cause more harm than good because we might want to push it out because it’s not relevant at this moment. But then, when the patient kind of comes in and says: ‘Now I’m trying to think of having a child’, they’ve never been told that the IDH inhibitor could be dangerous, or they can’t conceive while on it,” Dr. Sharma explains.
Early reproductive counseling helps patients understand how treatment affects fertility, make informed decisions before therapy begins, pursue egg or sperm preservation if they wish, know what timeline their treatment realistically allows, and avoid unexpected surprises later.
Fertility And The Treatment Of Glioma: Important Considerations For Patients Of Child-Bearing Age
Can I pass this gene mutation (IDH) to my children?
The IDH mutation in glioma is somatic, meaning it occurs in the tumor cells but is not inherited from parents and is not passed down to children. That distinction is deeply important, and reassuring for families planning the future.
However, treatment-related risks to a fetus, especially from medications, are real and must be discussed.
Questions You Should Ask
- What options do I have if I want to become pregnant in the future?
- When is the safest time to pursue pregnancy after treatment?
- Should I freeze eggs or sperm before starting treatment, and how long will that take?
- Are there financial assistance programs for fertility preservation?
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