In March I attended the Young Survival Coalition Summit in Atlanta, a conference for women (and their loved ones) who have had breast cancer at a young age. I had an exhibit booth and asked women to fill out a short survey about their experiences in getting information and help with sexuality or fertility issues after their cancer diagnosis. I also publicized the survey online after the summit and got some additional responses, so in all, 55 women responded. Their experiences do not surprise me, because, sadly, they are very similar to other studies that have been published.
First, let’s look at some characteristics of our women: 43% were between the ages of 45 and 59, 15% were 30-44, and 22% were over age 60. However, many were long-term survivors: 38% were diagnosed with breast cancer more than 5 years ago and only 6% had just been diagnosed in the past year. These women were better educated than average, with 26% having a 4-year college degree and 47% a postgraduate degree. They also were 81% non-Hispanic white, 13% African American, and the rest were of other ethnic backgrounds. Most were currently married (72%) with another 15% living with a partner and the rest separated or divorced. So our group of women is very similar to the usual breast cancer survivor who fills out surveys online or at a conference: more white, well-educated, and married than the general population of the US.
One would think that these women would be pretty savvy about finding medical information, both from their oncology team and on the internet. But here is what we found: Over half of women (56%) were somewhat or very dissatisfied with the information or help they received about sexuality after cancer. Similarly, 57% of women who were concerned about fertility after cancer were somewhat or very dissatisfied with the information and help they received. Only 23% of women got sexual information from their oncology team, although 40% of women concerned about fertility were given information. Women were more likely to get help with sexual problems from a support group (47%), a breast cancer conference (45%--not surprising since the YSC Summit had sessions on sexuality), or a web site (38%). Sources of help on fertility included a breast cancer conference (40%), a support group (30%) or a web site (30%).
We asked women about barriers to getting help on sex or fertility. Fifty-eight percent agreed that their oncology team did not bring up the topics of sexuality or fertility—and 27% agreed that it was uncomfortable to bring up these topics in a busy clinic. And of those brave women who did ask questions, 31% reported that their oncology team did not have helpful answers! Furthermore, 40% of women did not know how to find expert care for sex or fertility problems and 24% believed they could not afford to see a specialist even if they found one.
It is results like these that motivated me to work for 15 years on the programs that are now part of Will2Love. I hope we can provide accurate, timely information for women with breast and other types of cancer, as well as guidance on finding expert, affordable care.
This educational material is intended for informational purposes only and is not intended to replace, or substitute for, professional advice, counseling, diagnosis, or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a condition. Never disregard professional advice or delay in seeking treatment because of something you have read in this educational material.
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