The National LGBT Cancer Network
Phoebe Brown: Ovarian Cancer Survivor
Phoebe Brown was diagnosed with ovarian cancer in 2005, at age 34. An accomplished filmmaker, Phoebe explored the emotional aftermath of her cancer diagnosis in her 2007 documentary 99 to 1: Ovarian Cancer and Me. Her film has played at film festivals throughout the world, and, in 2009, won the Jury Award for Short Film at the 1st Ippokratis Health Film Festival in Kos, Greece.
Phoebe says that when she was first diagnosed, "the scariest part was seeing the statistics and getting really panicky about ovarian cancer being a killer disease." She shared her story with the National LGBT Cancer Network because she wants people to know, "Not everyone is the worst-case scenario. There needs to be some space in there for people to hear you are going to make it through this."
NLGBTCN: How did you learn that you had ovarian cancer?
Phoebe: I was having uncomfortable abdominal symptoms. In retrospect, I realized that my abdomen was swollen; but at the time, I just thought that I had gained weight. Also, because I had all the symptoms that you get with a urinary tract infection (UTI), like back pain and frequent urination, I figured it was a UTI.
NLGBTCN: What happened next?
Phoebe: I went to see my doctor, and when she did my exam she found a cyst on my ovary. It was so large she could easily feel it. And because it was so big, she thought I should have it removed.
NLGBTCN: So you went into surgery thinking all you had was a cyst?
Phoebe I had had an ultrasound, and the doctor said that what she saw didn't make her think it was cancer. Also, my CA 125 blood test (which can be elevated if you have ovarian cancer) was totally normal.Before surgery, my doctor said to me, "I'm 99 percent sure this isn't cancer. But anything can happen."
NLGBTCN: How did you learn it was cancer?
Phoebe: I knew something had gone awry when I realized how long the surgery had been. I went in at 2:00 in the afternoon and it was 9:30 when I came out of anesthesia. In one way, it was a total shock. But because my doctor had said to me, "I don't think this is cancer," I had heard the word cancer, and the possibility of it being cancer had gone through my head. So, I was sort of prepared it could be cancer, and that my surgery might be more extensive, but I had not thought beyond the surgery or about treatments, like chemo.
NLGBTCN: NLGBTCN: What stage was your cancer?
Phoebe: It took time for me to get the full results. It was one mass, but it had gone through the ovary, so it was stage II. But it hadn't spread to my lymph nodes. And that's unusual for ovarian cancer. Usually by the time it's diagnosed it's all over the place.
NLGBTCN: How was it for you as a lesbian in the hospital?
Phoebe: My partner was with me. She was there the whole time, with my mom. We had prepared before the surgery, and filled out the forms so that my partner would have power of attorney. But we never had to produce those documents. And the fact that she was there with my mom set up a situation where everyone was reacting to her and treating her like family.
The only time we had a problem was when I had to go back into the hospital a year later, because I had had a complication. We had one nurse who tried to [give us trouble]. She was a night nurse, and she came in to ask me some questions. Jackie, my partner, asked her a question, and she said, "I can't answer that, I can only tell the patient."
But everyone else was super great to her. My oncologist, who is a conservative guy, never made Jackie feel uncomfortable, and always included her, which definitely made a difference in terms of our experience of care.
NLGBTCN: How are you feeling now?
Phoebe: Great! I feel like I did before I knew I had cancer. I feel healthy and my energy is good. I feel as good as one can feel.
NLGBTCN: Did having cancer affect your relationship?
Phoebe: We've been together now for 13 years. If anything, it affected us in a positive way. Jackie was very involved in all aspects of my treatment. When you are in the hospital, it really helps to have someone advocating for you when you can't advocate for yourself because you're not mobile or clearheaded. I think having an advocate also changes the way you are treated in the hospital. When someone is there and on it, your standard of care improves.
NLGBTCN: What message do you have for other members of the LGBT community who may face a cancer diagnosis?
Phoebe: You should make sure your partner has a legal document granting them medical power of attorney and that the hospital staff is aware of your wishes to have your partner included in all medical conversations.
I also think it's important for lesbians to know that they may be at greater risk of developing ovarian cancer. Within our community there is a tendency to let GYN visits slide when you don't need birth control or you don't have insurance. It's certainly not everyone's favorite doctor visit. But it's important to listen to your body and if something doesn't feel right, get it checked out.
You can learn more about Phoebe Brown's documentary 99 to 1: Ovarian Cancer and Me here
This page was made possible by the New York State Department of Health with funding from the Centers for Disease Control and Prevention (Cooperative Agreement # 1U58DP000783). The information contained herein does not necessarily reflect the position of the funders.
Add your name to our mailing list: