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Kathy’s Story: A Special Sisterhood and Give Me a Second

January 3rd, 2011 by - comments (5)

Kathy’s Intro: I found a new calling when I got a “new” body in 1998. That was the year I had a hysterectomy and oophorectomy because my family history put me at a higher risk for breast and ovarian cancers. That year I went online to learn more about hormone replacement and physical issues post-hysterectomy, but didn’t find much information. I created a website that I called “HysterSisters,” where women could talk about what was going on in our bodies. Now HysterSisters.com is one of the most respected patient support sites on the Internet. In 2010, my experience listening to women’s questions inspired me to get an important message out to all women dealing with gynecological and other serious health matters: get a second opinion. HysterSisters launched a video and website called Give Me a Second in June 2010 to encourage women to get second opinions before a hysterectomy or other major surgery. Here is the story behind Give Me a Second – and why I believe our message can make a difference in our lives, and those of our daughters and granddaughters.

Nearly 30 years ago, my mother died of ovarian cancer. Before her, my grandmother died of breast cancer. At that time, there was no genetic test to tell me whether I was at increased risk for cancer. So in 1998, at age 41, I chose to have a total hysterectomy and oophorectomy, the removal of the uterus, fallopian tubes and ovaries.

The night before my surgery I cried like a baby, but I welcomed the peace of mind that my body would not betray me.

The post-hysterectomy phase was mysterious and new – so much to learn about how our bodies work. I looked everywhere and talked to everyone including my doctor. I was trying to get support and more information about this new body of mine. Surprisingly very little was available to patients like me. Both online and in the bookstore, hysterectomy information was fragmented, anecdotal, and sometimes contradictory.

When I couldn’t find the information or support system that I needed, I created my own. I started website called “HysterSisters,” where women shared their hysterectomy experiences. Nearly 13 years later, HysterSisters has become my life’s work – and another door opened.

As chief forum moderator at HysterSisters, I see a lot of questions – over 10,000 visitors a day! Over the last few years, I began to recognize a pattern: Women who come to HysterSisters before their surgeries feel empowered and educated; women who find our community after surgery need a lot of support. There is post-surgery confusion. They need more answers from their doctors and nurses. Many didn’t know what to expect or felt rushed into the operating room. And some women expressed regret over their decisions, when they learned that alternative treatments and procedures are available.

I decided that women needed to talk with each other before surgery, not just afterwards. So in 2010, our team created a website to promote second opinions before any surgery, but especially before hysterectomies. The heart of Give Me a Second is a video of little girls sharing their mother’s advice. When women get second opinions, they get more information, a new point of view, and for many, they get peace of mind about their decisions.

We know from an internal poll that over half our respondents did not get a second opinion before their own surgeries.

When we ask our members why they did not get a second opinion, we often hear things like this:

“I love my doctor! He delivered my babies. I couldn’t see another doctor!”
“My doctor helped me through so much. Aren’t all doctors trained the same?”
“I feel disloyal talking to another doctor.”
“I don’t want to hurt my doctor’s feelings.”

I’m a patient support advocate, so I must speak up. I feel duty bound to encourage women to get another opinion when their doctors recommend hysterectomy. It is not a matter of trust, and it does not violate your relationship with your doctor. A second opinion is a way of taking care of yourself by learning as much as you can before enduring a life-changing procedure.

I believe that second opinions will help reduce the rate of open abdominal surgeries, and they may also reduce the hysterectomy rate overall.

I do not regret my own hysterectomy. I made the best possible decision, taking my doctor’s recommendation into consideration. But if I had to make the decision all over again, I would have different options today.

In 2010, I learned that I do not have a genetic predisposition to breast cancer. Testing negative for BrCA1 and BrCA2 gene mutation was a milestone not only in my life, but also in the lives of my daughter and 1-year-old granddaughter.

About Kathy Kelley
As founder of HysterSisters and Give Me a Second, Kathy Kelley has become a respected patient advocate on the subject of women’s gynecological health. Kelley is a frequent guest speaker to physician associations, where she speaks about the role of patient support outside of the doctor’s office. In 2009, she was the invited guest of respected physician Arnie Advincula, M.D., at a panel on patient care at AAGL’s Global Congress of Minimally Invasive Gynecology. In 2010 she gave the keynote address at AAGL’s conference for gynecological surgeons, and was an invited guest during its November 2010 annual meeting.

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5 Responses to “Kathy’s Story: A Special Sisterhood and Give Me a Second”

  1. Yolanda says:

    Thank you for sharing Kathy’s story. I found HysterSisters a few months after my surgery and the women who responded to me when I hit the 1-year anniversary (and HUGE wall of grief) were monumental in my emotional recovery.

  2. Mary Filkins says:

    You just went ahead and had a hysterectomy/oopherectomy electively with no pre-condition other than family history?

  3. Mary, I think Kathy would welcome a question about the process but I want to caution against judging women for their health choices — we never do know what all comes into play when a woman chooses along with her doctor for what she feels is the best course of health care. I think the important point here is that many women and their doctors do decide this is best course and there is now a lot of information and support for women before and after. As Kathy herself says, she doesn’t advocate or recruit, she simply supports.

  4. Holliday Tyson says:

    I just stumbled onto HysterSisters while researxhing something about cervical procedures, and am very impressed by the combination of sisterly support and regular helpful facilitation by hostesses with good quality information. I read this page because I was curious about who started and owned this site. I have worked for 30 years as a nurse and midwife in women’s health, and I struggled myself, in 1990 with having an emergency hysterectomy at 29, and feeling such a lack of information and support before and after. It is not heartening that sites like HysterSisters and Get a Second are necessary but I found it heartening that they are doing such a good job in supporting and educating women and by their presence and quality,and Kathy’s advocacy work,also
    engaging thoughtful physicians and their organizations. This is valuable work, and I wanted to write to say thank you.

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