I met Sara Bartosiewicz-Hamilton last year when Cloudhead published a photo essay from The SCAR Project on this blog. This year, for Breast Cancer Awareness month, we continue our relationship and collaboration with this wonderful project. I sat down with Sara to talk about her own experiences with breast cancer, how other people perceive her choices and choosing to go “flat” instead of having reconstructive surgery.
When did you find out you had the BRCA gene?
Fall 2006. My mom’s family has a long history of cancer, and I knew I was at risk because my mom tested positively a few years before.
I decided not to test before then, because I was dealing with secondary infertility. I couldn’t handle anymore. I knew I had to deal with it, but tucked it away in a box for a little while. I always knew I had to face it, though.
I was 29 when I finally tested, and I knew it was important, because I had a cousin who had it at 30. At that point, I didn’t really understand it all, but I knew the age of when they find cancer in your family is important. When my daughter turned one, I was almost 30 and had to deal with it.
How old is your daughter now?
8. Her name is Payton.
Where are you from and where did you grow up?
Southwest, Kalamazoo, Michigan. Finished undergrad in Chicago.
What was your family history of cancer?
My mother’s mother died of breast and ovarian cancer. Two aunts had breast cancer and one had ovarian cancer. We have a long line of family members who have fought and many have passed from various cancers. So for us, when we found out what our genetic history was, it was not a surprise. It was more of an answer as to why so many in our family have developed cancer.
Not just women, either. Men, too. Colon and pancreatic cancers are also BRCA related, and there have been several of those.
I went to my local cancer center to have the gene testing done, because I didn’t talk about it with many people. I knew that if I had the gene that i would have the prophylactic mastectomy, and I didn’t want to deal with others’ opinions. When I tested, positively, that is exactly what I chose.
What were other people’s opinions?
Mixed. It was in 2006, and I had the surgery in January 2007. At that time there wasn’t a lot of information out about gene testing and prophylactic surgeries, so I did face a lot of judgment and scrutiny. People don’t understand. That’s why I chose to write a blog of my journey, and why I became involved with Bright Pink. Bright Pink reaches out to women who are at high risk.
I wanted to find photos of young women having mastectomies, and there were none to be found.
That’s also why I reached out to David Jay. I wanted to find photos of young women having mastectomies, and there were none to be found. A friend told me about it. She was going to be photographed.
The SCAR Project photos were exactly what I needed to see. I told David Jay that his project was exactly what I needed to know even if he didn’t want to accept me to be photographed.
I try to be upfront about my journey, because I made a choice. I wasn’t being told that if I don’t do it, I’d die in a year. I didn’t feel like it was a choice, though.
My journey is also different from many of the others in The SCAR Project, because I was healthy and didn’t go through treatment. People ask a lot of questions. Usually, people who go through cancer aren’t questioned about the choices they make.
I like to make that distinction, because it is different. I had a choice to be proactive or wait to see if I developed cancer. Either way, it’s not a great choice.
Then, in December of last year, I had to have my implants removed, so now I am living completely without reconstruction. Again I faced a lot of judgement about that.
It’s wrapped up in what society believes a woman should look like and that my identity is wrapped up in two breasts, whether they are mine or not. It was an interesting path.
I started developing pain from the implants, and over time it became a daily discomfort. I was at a SCAR exhibit and talked to one of my scar sisters who was living flat, and told her that I was considering having my implants removed. Then, I opened up to my husband who was supportive. He saw the pain I was going through. One friend, though, went off on me and told me that I needed therapy.
I waited a year after my friend told me to get therapy to have the surgery, even though I knew she wasn’t right, I wanted to be sure that when I showed up at the plastic surgeon’s office that I was done. When I arrived in the surgeon’s office, the first thing he said was “what took you so long?”
I haven’t felt the need to mourn that loss. I don’t feel like less of a person. I feel like having my reconstruction removed allowed me to really be where I am now in my journey. I feel more like me than I ever did with my reconstruction.
What made you decide to have the reconstruction initially?
I had the reconstruction when I first had the surgery. I had the ontological surgeon perform the mastectomy and the plastic surgeon came behind her and placed expanders in. It took a few months for the expansion process, and then they were swapped out with implants.
Then I actually started with silicon. My body didn’t like the silicon implants, so we tried saline implants. Finally, I went through a nipple reconstruction. I had very expensive breasts for a few years.
You founded Flat & Fabulous, a group for other women who have decided to stay flat?
I founded it with my other SCAR sister Barbi. We focus on empowerment. There are so many opinions of how we should be living our lives, and we see so many women who are feeling powerless. People should live life to the fullest without worrying what society or their moms or best friends think, because at the end of the day you’re going to look back on your life and need to make it the best life you can possibly live.
There are so many support groups for BRCA, but there are very specific needs for women who don’t have breasts. I thought we might have a dozen people, and it’s grown to nearly 400 in the last 10 months. We have a fan page, because we have so many people who want to be involved who don’t live the flat life. I’ve met so many other women like me who have had pain or others who right out of the gate said that reconstruction is not for them. So many women write to say, “Thank you! I thought I was the only one.”
So many women write to say, “Thank you! I thought I was the only one.”
It’s sad that so many feel alone. Particularly when I started researching, looking at the statistics, I learned that flat women are in the majority. I thought I would be one of very few people in the world who would be without reconstruction. It’s a societal perception that is very skewed.
We certainly support women who have reconstruction. We also have women who go in wanting the reconstruction and the doctors decide not to do it because their bodies aren’t able to handle it. Some go on to have the reconstruction, and we fully support any choice that a woman makes on this journey.
Each woman goes down a very unique path, and each needs to have the support and love of whatever her choices may be. We find our role in empowering women to make the choices they know are right for them and seeing their strength and beauty regardless of what they decide.
Was your plastic surgeon supportive of your choice to have your implants removed?
I went to talk to him a year before I had the removal surgery after talking to my SCAR sister. I was in pain, and he couldn’t find a reason for the pain. Apparently, some women just never feel comfortable with the implants. I don’t know that I would have chosen to be flat had I not developed so much pain. At the same time, I was never really comfortable with my reconstruction. I never looked at it. I just kind of avoided it altogether.
Post reconstruction, I had big boobs. I never had large breasts as a teenager, and suddenly I had this big cleavage. It almost stunted by ability to move on from my surgery. I don’t know I would have made the choice had I not developed the pain. When I talked to my doctor, his first reaction was, “What took you so long?”
What one piece of advice would you give to a woman facing cancer, BRCA testing or any other step of the journey?
I support women who are facing these decisions at all steps of the process. I always tell them to take some time to breathe and really look inside themselves, to figure out what they want to do. At the end of the day, most women have the answer inside themselves. They know what their heart wants. The key is tuning out everyone else’s advice and opinions and get in touch with what you really want.