by Lindsay Nohr Beck, founder, Fertile Hope

When I was diagnosed for the second time in two years with tongue cancer, things were a little different from the first time around. I was told that, this time, I would have to have chemotherapy and surgery, as well as more radiation. I was also told that the chemo might leave me infertile. In the face of life and death, this may not seem like an issue that should take priority, but for me, it was huge. When I raised questions, my surgeon admitted that she didn't have many answers, and couldn't be as helpful as we both would have liked. So, I decided to proactively seek out answers for myself.

In the weeks before I started chemotherapy, I threw myself into research about what fertility options were out there. I discovered that information was hard to find, that men had better options than women, and that insurance companies rarely covered anything. I was fortunate though, I discovered an experimental egg-freezing treatment and was given the chance to preserve what was sacred to me, my fertility. The drugs were donated by the sponsoring drug company as part of the protocol, but I still ended up with a hefty bill for the procedure. If nothing else, it made me feel that I had done everything I could do to protect myself and my future fertility. But the whole experience left me wondering how many people slipped through the cracks; how many people only discovered the repercussions of their treatment after the fact, and why no one was doing anything about what seemed to me a gaping void in the care of cancer patients.

To meet this need, I founded Fertile Hope, a nonprofit organization dedicated to providing information, support and hope regarding cancer and fertility. There is a lot to consider before, during and after treatment, and many reproductive decisions must be made in the short time frame between diagnosis and treatment. Nothing is guaranteed – fertility or infertility – but the problem is that you will not know for sure what has happened until after treatment, when it is often too late to do anything. Options, answers and hope exist and start with quality information. Fertile Hope helps you, as a patient, be informed about your risks, educated about your options and empowered to make decisions throughout the journey.

Gathering Information

The first step in gathering information is to ask questions of your medical team, such as:

• Will my treatment have any short- or long-term side effects on my reproductive system?
• Is infertility a possible side effect?
• Are there alternative ways to treat my cancer that will result in less damage to my reproductive system?
• What are my fertility preservation options before, during and after treatment?
• Would using any of these options possibly make my cancer treatment less effective?
• After treatment, how will I know if I am infertile?
• After treatment, will I enter into menopause prematurely?
• If I become menopausal after this treatment, is the change more likely to be temporary or permanent?
• If I become infertile after treatment, what are my options for becoming a parent?
• How long after treatment should I wait before trying to conceive?
• Can you refer me to a fertility preservation specialist?

Your doctor may not be able to answer all of these questions but, if not, he or she should be able to help you seek out a specialist who can.

Fertility Options

The most proven and successful fertility option is embryo freezing, with pregnancy rates averaging 10-25% per embryo. But for a single woman without a partner to fertilize her eggs, embryo freezing may not be an option. Some women may choose to try to have a child using donor eggs, sperm and embryos; or they may opt instead for surrogacy, adoption or child-free living.

Today, there are also other, more experimental choices being developed in fertility preservation. Although the success rates for most of these treatments are currently unknown, they offer hope for the future:

• Egg freezing: Still experimental. Based on limited data, pregnancy rates are approximately 3% per oocyte stored, but technology is advancing quickly and several centers have promising success rates.
• Ovarian tissue freezing: Ovary(s) are removed, divided into small strips, frozen and stored for later transplantation back into the woman's body. Still experimental, ovarian function has been restored in several cases, but there have been no live births to date.
• Ovarian transposition: Ovaries are surgically moved away from the radiation field to minimize exposure and damage. Ovarian function success rates are approximately 50%, but pregnancy rates are unknown.
• Radical trachelectomy: An experimental procedure for cervical cancer patients, where the cervix is removed and the uterus preserved, with unknown success rates.
• Gonadotropin-releasing hormones (GnRH) analog treatment: A monthly injection that is administered during chemo, creating temporary menopause that may reduce the damage and fertility risks from chemotherapy. Most studies show no effect.
• Embryo freezing: Proven, successful and readily available. Eggs are removed, fertilized with sperm, frozen and stored for future use. Pregnancy rates are 10-25% per embryo stored. Available for girls post-puberty and a partner or donor sperm is required.

You should consult your medical team and your insurance provider when considering any and all of the above treatments. These procedures have varying risks and side effects. In addition, the treatments can be expensive ($500 to $10,000), and few are covered by insurance, although some patients have had success petitioning their insurance providers for coverage.

Pregnancy After Cancer

Research thus far is reassuring, but the number of pregnancies and births studied after cancer treatment is still small. If you're considering pregnancy after cancer treatment, there are some factors to be aware of, and which you will want to discuss with your medical team before pregnancy:

• Radiation to the uterus can increase the risk of miscarriage or premature births.
• The stress of pregnancy can sometimes worsen undetected damage from cancer treatment to a woman's heart or lungs.

That said, research has some reassuring news for cancer patients as well. For example:

• Pregnancy after cancer does not reduce chances of the patient's survival (i.e., trigger a recurrence), even after breast cancer.
• Women who have had chemo have been able to conceive and deliver with standard in vitro fertilization techniques.
• Rates of birth defects in children born after one parent's cancer treatment appear similar to that of the general population.
• No unusual cancer risk has been identified in the offspring of cancer survivors (except in families identified with true genetic cancer syndromes)
• Growing eggs exposed to chemo or radiation may suffer genetic damage, but this damage appears to be repaired within six months.