Processing Missed Fertility Preservation Opportunities

People who did not preserve fertility before treatment tend to describe it afterwards as something they failed to do. It is worth looking at the actual sequence. Treatment often had to begin within days. The information arrived, if it arrived at all, in the same appointment where you were told you had cancer. Many people remember little from that appointment. Cost may have come up without anyone mentioning assistance programs.

NCI advises talking with your doctors and fertility specialists before treatment begins. When that conversation does not happen, it is a gap in the system. It does not become your decision just because it happened to you.

Fertility after cancer treatment is not one switch. NCI says it depends on the type and dose of treatment, how long it lasted, your age, the location of the tumor and your fertility beforehand. Some chemotherapy drugs called alkylating agents carry a high risk. Radiation to the pelvis or the central nervous system can also damage fertility, and surgery that removes reproductive organs ends it.

NCI notes changes may be temporary or permanent. A useful first step is asking your team how likely your fertility is to be affected, how long it might take to return, and whether to see a fertility specialist or reproductive endocrinologist.

One thing to know. NCI notes that some people diagnosed with primary ovarian insufficiency still ovulate and have irregular or occasional periods after cancer treatment. So what your periods are doing is a question for your care team, not a final answer.

Some of these will be relevant to you and some will not:

• Surgical sperm retrieval. NCI describes TESE as removing a small sample of testicular tissue, and TESA as taking sperm cells and tissue from the testicle with a small needle. The sperm cells are collected and frozen for future use.
• Other paths. Ask a fertility specialist what else may be possible for you, and whether anything is still worth doing sooner rather than later.

None of these is the thing that was lost. Presenting them as equal swaps is one reason this conversation so often lands badly. They are the paths that remain, and many people build families in different ways.

NCI points to Livestrong Fertility for financial support, a discount program for qualifying cancer patients and help finding a fertility clinic. NCI also notes that some states require insurance companies to cover fertility preservation methods, and links to RESOLVE for coverage details. Coverage varies, so ask your team or a patient navigator about insurance and assistance.

Reduced fertility is not the same as none. NCI says there may still be a chance of pregnancy during treatment, and that some treatments may be harmful or cause miscarriage. Doctors may recommend birth control during treatment. For men, NCI says condoms and other forms of birth control may be advised. Ask your team how long that advice applies for you.

There is a common instinct to argue people out of this. You can adopt. You might still conceive. At least you are alive. That last one is the worst of them, because it asks you to trade one loss against another, as though gratitude cancels grief.

The loss is usually more specific than "children". It might be pregnancy. It might be genetic continuity. Very often it is the choice itself: the sense that a decision this large was made about you while you were unaware of it. Being precise about which of these you are mourning tends to make it more bearable. It also makes it easier to say to someone else.

NCI suggests speaking with social workers and patient navigators about fertility concerns. Ask whether your center has a fertility counselor or a support group for people whose fertility was affected by treatment. Asking for that referral is reasonable at any point after treatment.

• National Cancer Institute — Fertility Issues in Girls and Women with Cancer
• National Cancer Institute — Fertility Issues in Boys and Men with Cancer