Actress Angelina Jolie's decision to have a double mastectomy as a prophylactic measure against breast cancer may be surprising to some but not to all those who have undergone the procedure.
Given actress and director Angelina Jolie's status as a sex symbol, her op-ed titled "My Medical Choice" in The New York Times about her double mastectomy as a preventative measure against breast cancer shocked many around the globe. Yet as screening for genetic mutations that could give rise to some forms of cancer become more common, prophylactic measures - even drastic ones - become more understandable.
American Kathy von Foerster, who's lived in Germany for two and a half years, had a double mastectomy and her ovaries removed in the United States after being tested positive - like Angelina Jolie - for the mutation of the BRCA 1 gene, which can sharply increase the risk of developing breast and ovarian cancer.
DW: Why did you choose to have a double mastectomy and your ovaries removed?
Kathy von Foerster: I'm currently 52 years old and when I was 45, I found out that my second sister had been diagnosed with breast cancer. My first sister had been diagnosed at 38, and passed away at 42. And two years later, another sister was diagnosed. That was around the time the genetic testing was becoming more well-known, so I decided to have the screening done, although I had not been diagnosed with cancer at all. I knew that if I tested positive for the mutation, I would strongly consider having some prophylactic surgery to reduce my risk of breast cancer. That was in 2005, and I tested positive for the BRCA 1 mutation.
I had a 60 to 65 percent chance of developing ovarian cancer, to which I had already lost an aunt. And I had an 80 percent chance of breast cancer. So I immediately had my ovaries removed because to me that was one of the scarier aspects since ovarian cancer is very hard to detect and so deadly.
Within a few months, doing a little more research and seeing a few more doctors, I decided to go ahead with the mastectomy. Within eight to nine months of being tested, I had both of those surgeries done.
Was it clear going into the genetic screening that you would have surgery should you test positive for the BRCA 1 gene mutation?
I was pretty certain. At the time, I was 45; I was done having children so I knew I didn't need to keep my ovaries. I look at my own children now and think their decisions will be much harder because they will find out at a much younger age.
Did you have reconstructive surgery?
I did. It was the immediate reconstruction, in which they put expanders in, and over the course of several months, they fill them to stretch your skin back out, and then they do exchange surgery in which they insert the implants.
I wanted to come home after surgery without a completely flat chest. My kids were younger at the time, and we spent a lot of time at the beach, and I wanted to feel comfortable in a bathing suit.
How did you feel having all this surgery done?
I felt a huge sense of relief. Someone used the expression that once you find out that you have this mutation in the gene and the accompanying odds of developing cancer, you feel like you have a loaded gun in your purse. Here I was, 45 years old, I had had two sisters diagnosed at 38 and 42. Somehow I had made it to 45 without being diagnosed. I'll always wonder, what was the difference? I've always eaten in a healthy way and exercised, but so did my sisters. I felt that for some reason, I was given a chance to do something, and I really felt I wanted to do something as quickly as I could.
There was some sadness. I can remember the night before the mastectomy looking at myself and thinking "It's sad." But that was small compared to the feeling of "I want to do this before I am diagnosed." Watching my sisters go through chemotherapy and radiation - I decided I wanted to do everything to avoid that and live to see my grandkids.
Do you think your age played role in your decision?
I think so. I've read stories of other women. If they're younger or not in a secure relationship, and certainly if they haven't had children, they've chosen to do the extensive screening that is available, instead of a mastectomy. So I think in some ways, my age and my situation were ideal for not having any hesitation to go ahead with it. I think it can be a really difficult decision if you're 25 or 30 years old and haven't had kids yet.
Was psychological counseling offered when you had your genetic screening done?
Yes, it was, and I took advantage of it. I think that the mental aspect of it is huge, and especially in our culture. I mean: you're going to cut your breasts off. I also read books.
What does all of this mean for your children?
I was pretty open with my three girls about it. They knew about my sisters, and I also had these two aunts, one with ovarian and one with breast cancer. This came from my dad's side of the family. When I was in my 20s, I would tell my doctor about my aunts, and they would say "That doesn't matter; that's on your dad's side." And the same thing happened when my first sister was diagnosed. They used to think that if there's a hereditary factor here, it can only come through your mom's side, but clearly, that's not the case.
My oldest daughter, who's 22, was pretty adamant that she wanted to get tested at 18. And she was tested positive for the mutation. But she's taken the news well. Every six months, she has thorough breast exams and at the age of 25, they will start magnetic resonance imaging [MRI] on her.
My other daughters, 18 and 20, have not been tested yet.
There's a group based in Florida called "Force" - Facing Our Risk of Cancer Empowered - that has a phenomenal website, with a question and answer forum. It may influence their decision to have children at a younger age and then get their ovaries out.
How did your family react to this entire process?
They were all very supportive. And we spread the word: my father was one of five children, so we let all of his siblings and their children know, and many of them have had the screening done.
Since you live in Germany, have you had contact with women here facing these decisions?
I've had some e-mail contact with a woman and her story is an interesting one in its differences. She's American, but has lived in Germany for at least 10 years. She had to fight to be tested here. She had lost her mother to breast cancer, but did not have a living relative who had been diagnosed. She wanted to do the screening, and it took her a long time to get the approval to do it. She finally had it done, but getting the results has taken forever. I had my results within one month.
The lab that does this testing is in Utah and they have a patent on this specific genetic testing - actually, there's a court case on this right now at the Supreme Court level about whether it's legal to patent genes.
At the time, this woman was told the results could take up to a year, but I think it took about nine months - she just got the news a couple of weeks ago that she tested negative for the gene mutation. That's a long time to make someone wait.
I'm still surprised in discussing it with other people in Germany, who don't have a family history - they don't know this testing is available and that people were doing this procedure. Obviously, Angelina Jolie's bringing this story out into the open will help a lot.
What suggestions would you make to women considering this genetic testing and perhaps even a preventative mastectomy?
To meet not just with doctors, but with genetic counselors as well, is certainly a first step to help answer a lot of questions about what to expect and the different screenings available. Speaking with other people who have gone through it, of course, and looking at the Force website.
I think there might be a handful of people who are not sure about testing - burying their heads and thinking "this can't happen to me." I would just encourage them to reach out to people who could help them - counselors, or others who could offer them information. It could really empower them.
American Kathy von Foerster lives in Cologne, Germany with her husband, and has three daughters between the ages of 18 and 22.