On January 11, 2011, Claudia Gilmore will undergo a preventative double mastectomy with reconstruction. The 23-year old does not have breast cancer, but has a genetic mutation that makes her more likely to develop cancerous cells in the future. She began writing a blog about life with the mutation several months ago. Eventually, the blog became a hot topic in DC, coming up in casual conversation after conversation.
Maureen Dolan-Galvaniz, a local film-maker and classmate of Claudia’s, heard about her previving blog and was fascinated. Wanting to not only tell the story, but spread the word about preventative options, Maureen began working on a documentary about Claudia’s journey to surgery.
Claudia has now appeared in Ladies’ Home Journal, The Today Show, and several other media outlets, spreading the message about previving. We were lucky enough to catch up with the producer/director of the webisodes, Maureen, and get a behind the scenes look into Previve.com and what previving is all about.
How did you first hear about Claudia’s decision to undergo a preventative double mastectomy?
I was out one Saturday evening with girlfriends when they started talking about this Georgetown
girl that was cutting off her breasts and blogging about it! They thought what she was doing was totally crazy – I don’t think either fully understood the BRCA mutations. I had never heard of the BRCA mutation either. I was so intrigued that I started Googling ‘Georgetown girl cuts off breasts’ when I got home. Sure enough, I came across Claudia’s blog. Claudia and I had been colleagues at Georgetown, we had taken our first documentary production class together.
Why do you think Claudia’s story needs to be told?
Because it is incredible and inspiring and touches on so many big ethical health issues. Would you want to know if you had a genetic mutation? What would you do once you found out? Should we test our children? What is life like once you know that you have an increased risk for a deadly disease? Previvors blow my mind. They are some of the most inspiring, joyous people I have ever met. For example, Claudia is so thankful that she knows that she has this genetic mutation that she doesn’t waste any time worrying about what life would be like if she didn’t. She seizes every day and doesn’t dwell on her really unfortunate mutation.
What types of information have you learned about the BRCA1 and BRCA2 mutation since meeting Claudia and following her story?
Obviously, I’ve learned a ton. However, sites like Bright Pink and Force provide factual information about the mutation: that it raises the risk of breast cancer up to 85% in women with the mutation, that men can be carriers, etc. The sites are extremely helpful on top of all the medical advice we have been dealing with since beginning the documentary.
What has the response been like since the first webisode aired?
Positive and encouraging. People really like Claudia and want to see her journey unfold. They are so gracious – we get tons of people saying ‘thank you for connecting us’, ‘thank you for the work you do.’
Why do you feel the option of preventative surgery is important for women to be aware of if they have a genetic mutation like Claudia’s?
Women with BRCA have up to an 85% lifetime risk of getting breast cancer. BRCA women have a genetic mutation in their BRCA1 or BRCA2 genes that belong to a class of genes known as tumor suppressors. Yes – these women are extraordinarily vulnerable to breast cancer. Vigilance is always an option for young women with BRCA – this involves mammograms, breasts exams by doctors, sometimes even MRIs.
When doctors find an unusual lump in a woman with BRCA’s breast, they are more likely to biopsy it. These biopsies can be frequent and painful. Breast cancer in a BRCA woman is also more aggressive than in a woman without the mutation. For peace of mind and to dramatically decrease your risk for breast cancer (some say less than 1%), prophylactic double mastectomy might be the best option.
Why did you, personally, want to begin this project as a young female?
I really wanted to tell this story because I thought Claudia was so courageous and inspiring. Claudia and I really connected and I thought her and I could work together to tell this story the best possible way.We have similar goals: to tell a great story and get the word out there about preventative breast cancer measures. There was a great story, right here in Washington, that needed to be told, I had access to the subject and I had the know how and resources. It seemed too great an opportunity to spread the word, while making an interesting documentary, to pass up.
Why is prevention, especially for young women, so important?
Breast cancer – cancer in general – is so devastating. If we can be vigilant, take our health into our own hands, and actually do something to avoid cancer… why wouldn’t we? Women have been having prophylactic mastectomies for a long time, but it wasn’t until recently (within the last few months) that studies have come out supporting prophylactic double mastectomies.
What message do you hope the site sends young women?
That you are responsible for your own health and that you do have options. Also, that you are not alone. We have heard from so many woman who have felt isolated because of their BRCA status. If there is anything I have learned, it is that you are not alone and the BRCA community is really a sisterhood that you can tap into and feel supported.
When will the next webisode air?
October 29th… be sure to check it out at Previve.com!