Will2Love is a startup company offering online help for cancer-related concerns about sexuality or fertility. Why is that important? Because over 60% of the 15.5 million cancer survivors in the US end up with severe sexual problems that do not go away by themselves, yet fewer than 20% ever get help from a health professional. In surveys, oncologists, nurses, psychologists, and other professionals agree that sex is an important issue to discuss—yet each group also asserts that talking about sex is “not my job!” Doctors think nurses should do it—nurses think doctors should do it—and psychologists just think some other professional should do it!
Infertility affects fewer cancer survivors, but each year in the US, another 170,000 people under age 45 are diagnosed with cancer and half will face damaged fertility. With men and women starting families at later ages, more young adults are facing cancer-related infertility. We can freeze sperm or eggs for the future, but only about 25% of men and 5% of women take advantage of these technologies.
I have spent my career at some of the top medical centers in the world—21 years at the University of Texas MD Anderson Cancer Center and 13 years at the Cleveland Clinic Foundation. Even in those settings, with excellent care and easy availability of sex therapists, gynecologists, urologists, sperm banks, and fertility preservation programs, sex and fertility often fell off the radar in discussions with patients. Only 15% of cancer patients in the US are treated at major cancer centers that would be most likely to provide reproductive health care, and only 6 centers (to my knowledge) have specialized clinics to help with sexual problems.
As a psychologist (and cancer survivor) myself, I have always been an advocate for empowering patients to make the best health decisions. Of course some people prefer to have their oncology team make choices, as long as they are confident in them—but I think a shared decision model makes the most sense. To make good decisions, you need accurate, timely information.
What if you are a 52-year-old man diagnosed with prostate cancer and have the surgeon telling you that nerve-sparing prostatectomy is your best shot at a long life while the radiation oncologist says you can avoid erection problems and urinary problems if you have proton beam therapy?
What if you are a 34-year-old woman, 4 months pregnant with your first and very wanted child, when you find out you have breast cancer? Your local doctor tells you to terminate your pregnancy if you want to live, but you find articles on the internet that say you may be able to have good cancer treatment and save your baby?
What if you are a happily-married 68-year-old woman on hormone therapy for breast cancer that shrinks your vagina and makes sex so painful that you just give it up?
I wanted to create an online place where people could find answers to their questions 24/7, in the privacy of home, without depending on their oncology team to take enough time to truly educate them. Will2Love’s free content includes News and Views columns about issues relating to sex, fertility, and cancer; moderated forums for patients/partners and for health care professionals; webinars with panel discussions of important topics; and an extensive section of resource links, all in one place.
We will be charging a modest subscription fee for men and women to use our self-help programs, which were developed with clinical trials showing that they improve users’ ratings of their sexual function and satisfaction. Each program includes information on the sexual and fertility impact of a whole range of types of cancer and treatments; step-by-step self-help exercises to prevent or overcome problems, guidance on finding expert professional help, and video stories from real patients as well as vignettes played by actors.
Before the end of 2016, we plan to add fee-for-service counseling by phone or videoconference in addition to our self-help programs. Health coaching will be done by trained patient advocates. Expert sex therapy or fertility counseling will be done by psychologists who are licensed in the state in which the patient is located. We are also developing a therapist manual for health professionals, especially the frontline clinicians like patient advocates or nurse navigators, who are typically providing sex and fertility counseling now. With our manual, maybe some online training, plus having patients use our self-help programs, we can greatly enhance the quality of care available all over the United States.
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.
