Making good fertility preservation decisions: tools for women with breast cancer

Below is a Blog Post by Dr. Michelle Peate originally published on the Cancer Knowledge Network website which has been copied here:

The idea that we can have a child when we choose to is an important part of human identity, and having this taken away from us can be really upsetting. Unfortunately, many young women who are diagnosed with breast cancer face this issue. Treatments for their cancer such as chemotherapy, may mean sacrificing their chances for future children.

My research has shown that young women who are diagnosed with breast cancer worry about infertility as a result of their cancer treatment. Around two thirds of them told us that they want (more) children in the future and that this is really important to them.

The great news is that there is hope for these women. Many women in this situation can access options that can maximise their future opportunities to become parents. The most common options are to freeze eggs or to create and freeze embryos before starting cancer treatment. There are also some other experimental options, such as freezing ovarian tissue that can be considered.
However, the decision to preserve fertility is a difficult one.

• Fertility procedures are not without risks.
• There is no way to really know for certain if a woman will become infertile as a result of cancer treatment.
• Fertility preservation often needs to occur before they start cancer treatment – so this decision needs to be made quickly.
• Most women will only have one opportunity to preserve their fertility.
• Fertility preservation does not guarantee that a woman will have a baby later.
• Women often have limited access to good quality information about fertility preservation.
  
  

The decision to preserve fertility is difficult and is happening at a highly stressful time. Women may feel overwhelmed. They need support!
 
Ultimately, a good fertility preservation decision will weigh up the benefits and consequences of the decision, and women will make a choice that is consistent with their personal values.  In an attempt to support this process, we developed a decision support tool (called a decision aid) to help young women faced with this issue. The decision aid booklet was designed by a team of experts, using evidence to present information about breast cancer and fertility and the relationship between the two. It also presented women with values clarification exercises to facilitate the weighing up of the benefits and consequences for each fertility preservation option.
We evaluated the decision aid (read the paper here) amongst 120 young women who were newly diagnosed with early breast cancer across Australia. We found that the decision aid improved the quality of decision-making. Women who received the decision aid had more knowledge about fertility preservation and experienced greater satisfaction with the decision they made. They also were more certain about their decision and felt less regret than those who did not get the booklet.
It is very exciting to have an effective and useful tool that can now be used as part of clinical care. The decision aid has just been updated in light of new technologies and can be accessed here. Although we encourage you to use this tool if you are a young woman with early breast cancer considering your options or a clinician of a patient who is in this position, please keep in mind that this was designed for an Australian audience so there may be some differences around what is accessible in your location.

Now that we have done this, you might ask: where to next?
 
Well, our group is now working on a website which presents this information in an easily accessible way  so that people who would prefer not to have to read a whole lot of information in a booklet can still get hold of it online – where information will be presented through simple English, videos and animations. Ultimately, this decision aid will be specifically designed for those who find health information difficult to understand and process. This decision aid will be formally evaluated in a randomised controlled trial and be made available to the public following completion of the trial.
As mentioned above, one of the challenges in this field is calculating a woman’s chance of infertility. Current ‘calculators’, don’t tend to take into account a woman’s fertility before her cancer AND her recommended treatment.  So our team is also in the process of developing a fertility predictor that will be used by health care practitioners to work out a woman’s risk of infertility.  This tool will use personal factors, clinical data (such as blood biomarkers) and the recommended cancer treatment to predict a personalised risk of infertility. We will also evaluate this in a clinical trial and will be available following completion of the trial.