Tuesday, July 26, 2011

BRCA Positively in the News

Watching ABC World News tonight, there was a chunk dedicated to how few doctors are recommending genetic testing to those with a high risk of developing breast cancer. According to this report, some 41% of doctors are educating their patients about the BRCA gene mutations. That leaves 59% of doctors NOT suggesting or even educating their high risk patients about the genetic testing available to them. And yet they are surprised when a 25 year old woman is diagnosed with breast cancer! I say kudos to the doctors (& thanks to my sister's) who are looking out for us & offering us information that might help save our lives. To the 59% of doctors who are NOT speaking to their high risk patients about genetic testing, I say shame on you.

As a teacher (whose mother is also a teacher), I know that the field of education is ever-changing. To choose a career in education means signing up for a lifetime of, not just teaching, but learning. Science & the medical field is another career path where evolution is not just expected, but demanded. For this reason, I am perplexed as to why so many doctors are still not up-to-date with genetic testing. We KNOW there is a gene mutation that DRASTICALLY increases a person's risk for breast & ovarian cancer. Why on EARTH isn't genetic testing a more common topic of conversation in doctor's offices? It's a simple blood test that can potentially save lives. If doctors aren't going to help us prevent breast & ovarian cancer, then I want their stupid faces to stop looking so surprised when they have to refer women in their twenties (& sometimes younger) to oncologists. COME ON...thanks to amazing human brains & hard work, we have the technology to potentially prevent life threatening diseases. So let's use it! I believe it's an injustice not to. A person always has the right to decline the test, but they should be offered as much information as possible. Knowledge is power!

Sunday, July 24, 2011

Defining Previvor

I recently emailed FORCE to get some clarification about the definition of the word "previvor." Perhaps my email was a little loaded, but I think it also accurately conveyed how I feel. I feel like FORCE's definition of the term leaves out a huge population of people who have been proactive about their predisposition. Here's some of what I wrote:


I have read much controversy about the word previvor and I am writing to get some clarification.

I am someone who has had a prophylactic bilateral mastectomy because of my BRCA1 gene mutation and strong family history. As I understood it, this is what makes me a previvor. I am someone who used knowledge as power and saved my own life. Of this, I am very proud.

However, I have read many articles and blogs that define the word previvor as someone who simply has a genetic predisposition to cancer. By this definition, a previvor is someone who hasn't necessarily taken action, but was merely born with a genetic mutation.

I'd like to know which definition FORCE supports. If it is the first, someone who has taken action and saved his/her own life, then I am a proud previvor and want to reach out and help people across the world and spread the word. I have made t-shirts that say "Proud Previvor" and worn them to breast cancer related events, as well as just on a regular day out and about. People ask about the word and it gives me an opportunity to get more information out there. I won a local essay contest about being a survivor titled, "A Survivor of Sorts: A Previvor's Story." I have participated in breast cancer walks and talked about being a previvor and written it all over my gear. I respond to questions and comments on websites under the impression that my definition is correct. As you can see, I've created an email account dedicated to the cause and use it to communicate with women who are struggling with the news of being BRCA positive and those who are struggling with the decision to have prophylactic surgery. I share photos and information based on my experience and believe I have truly helped many women in this way. Just as my essay title implies, I do believe myself to be a survivor of sorts. This is how I want to continue my life.

But if the definition really is the latter...I almost don't want to be associated with the word and agree with those who find it rather offensive. A person born with a genetic predisposition to cancer is not a survivor of any sort. Someone can be BRCA positive, take no action, get cancer, and potentially die. Not taking action should not be associated with any word that implies living through something difficult (like survivor or previvor). I know of people who are BRCA positive who sat on it for too long and got breast cancer. Just because people are born with a genetic predisposition to cancer doesn't mean they are brave or proactive. It just means they have a gene mutation. I spent time being BRCA positive before I had my surgery. I would never have called myself a previvor. I was merely BRCA positive.

After my surgery, I felt very alone and still have only met one other woman (in person) who has made the same decision. With the emergence of the word previvor, I felt like I had a home in the world of breast cancer where, until then, I'd only seen survivors and supporters. And I thought this word, this category of people, gave me what I needed to feel...recognized. I mean, let's be frank...we recognize survivors because they kicked cancer's ass. They struggled, they fought, they won a battle...and they will forever have the scars and painful memories of that battle. My sister was diagnosed at 27 and really supported me (pushed me) to have the prophylactic surgery. She flew out from the east coast to the west for two weeks to be here for me, because she said that what I was doing was harder in some ways than what she did. I disagree with her and can only imagine what she went through, but that's neither here nor there. I struggled, fought (particularly with doctors and my insurance company, not to mention myself, at times, and people who did not support my decision), and will forever have scars and painful memories of my experience. My breasts are gone. I have no feeling throughout my new breasts and into parts of my back. I have huge scars. I have weird, constructed nipples. What I have does not compare in the slightest to what I had...except that I have my life. I do not consider my experience to be comparable to that of a survivor. I cannot. Because I didn't have cancer. However, I cannot consider my experience to be similar to that of someone who knows she has a high risk of cancer and does nothing. Because she didn't choose to have the surgery. I believe survivors are recognized for their strength and bravery on the highest of levels. And they can wear the word proudly. As a society, we encourage them to wear it proudly and show the world who they are and what they've been through.

Let me be clear...this is not about attention or pity or anything as minor as those things...this is about owning my life and my decisions and being proud of them within a community of peers. People who haven't survived breast cancer (or any cancer) would never venture to call themselves survivors. Even those who are by a patient's side throughout all of treatment and see everything that happens and experience everything with that person, still won't say they know what it felt like. In the same vein, people who are BRCA positive and haven't been through what I've been through...they should not venture to call themselves previvors.

Please let me know how FORCE means the word previvor to be defined so that I know how to proceed from here. Regardless of your response, I will continue to reach out and be an active member in the world of breast and ovarian cancer prevention. I am still proud of what I did and want to spread the word and help others. I will simply find a new way of identifying myself. Thank you very much.



Looking back on my email, I see some areas where I was...wrong. To use the words "simply" and "merely" when describing a genetic predisposition to cancer is degrading. I remember what it felt like to be told that I have the BRCA1 mutation. It was horrific. And I was not ready to do anything about it until months later. Even then I only participated in a clinical trial (though it was an extensive one with biopsies and medications). And after that, the truth is that I could have gotten breast cancer. So, for a year and a half, I was one of those people who knew about the predisposition and wasn't proactive. And I know the umbrella of fear under which I lived. And I am happy that people with a predisposition to cancer are being recognized. It's important for many reasons, only a few of which include helping raise awareness, campaigning for research and more/better options, and to offer those in the community a positive "label" by which they can define themselves and reach out to one another. So, I retract the negative feelings I have towards people with a predisposition to cancer being called previvors. To bond people who share this quality, regardless of what decision they make and how they choose to deal with it, I think is great!

However, I have now done something. Like I said in my email, I have scars and painful memories and yet still live with a bit of fear that I will get breast cancer (because it's possible) or ovarian cancer. Just like Sue Friedman wanted to give a "label" or a "home" to those with a predisposition to cancer, I want a home for those of us who have taken action.

According to FORCE (and confirmed in the lengthy response I received from Sue Friedman, herself), previvors are "individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor." And we all know the definition of a survivor.

SO, what I think I am now going to consider myself is a proud proactive previvor. I don't want to take away from those who choose surveillance over surgery. People with a genetic predisposition to cancer who haven't elected to have surgery deserve a place in this community. I'm not fighting that. I respect them more than it seems like I do. . And I, myself, am a previvor of ovarian cancer. As I have a high risk, but have yet to take action. But for ME, I felt like a sitting duck for breast cancer. But not everyone feels that way and I recognize that. And fact is, survivor, previvor, whatever...we all have this genetic mutation that bonds us. Some women who were diagnosed with breast cancer and then found out they have a gene mutation are considered previvors of ovarian cancer. There is bravery in all of it...being a survivor, a previvor, a supporter, even! And also in what I now call being a proactive previvor. :)

Saturday, July 23, 2011

Saving My Own Life

My name is Sarah and I am a proud previvor. I know there are a few different definitions for the word "previvor" out there, but I think of it as saving my own life. Merely being born with the BRCA1 gene mutation didn't make me a previvor...I felt like it made me a sitting duck. But facing the terror and having the guts to save my own life is what makes me a previvor. In February of 2010, I had a prophylactic bilateral mastectomy to reduce my risk of breast cancer from 80%-90% to less than 1%. This decision did not come quickly nor did it come easily. So, I am writing this blog to help get the word out there about the BRCA1 & BRCA2 gene mutations (which drastically increase a person's risk of breast and ovarian cancer) and share my story of being a proud previvor.

A Little Background
Breast cancer has infected my life in a suffocating way. My aunt was diagnosed with breast cancer at age 30 & fought three valiant battles. First round had one breast removed, second had the other breast removed, & third showed up in her chest wall. She lost her third battle in her 50's. My older sister was diagnosed at age 27. I'm proud to say she hit her 5 year survival mark in November of 2010 & is recently engaged to be married. My cousin was diagnosed at age 24. I'm happy to report that she is a survivor and is currently expecting her first child. One of my best friend's sister was diagnosed at age 26. Three years later, my friend, herself, was diagnosed at age 26. She was just diagnosed in early June...an hour after her sister passed from the disease...at age 29. What kills me about my friend is that her diagnoses could have been prevented. But that is a story for later.

When my sister was diagnosed in late 2005, she was fortunate enough to live on the east coast & have super educated & up-to-date doctors who knew about the BRCA gene mutations. (They are relatively new, having only been discovered about 10 or 15 years ago, I think. I swear some of us know more about this stuff than some doctors I've met.) One of her doctors tested her & she was positive for the BRCA1 mutation. Because the family history (my aunt & cousin) is on my father's side of the family, both he & I were tested. I sort of thought my sister got the rotten deal on this one (as I have had other health problems & the chances are 50/50 if only one parent is a carrier), but we were both positive. So, my father was the carrier. Just three months after my sister's diagnosis, my father was diagnosed with & lost his far-too-short battle with cancer. Though it was not breast cancer that took my father's life, men CAN get breast cancer.

My Story
I was 25 when I learned that I have the BRCA1 gene mutation. I signed up for a clinical trial that kept me "safe" for a year (age 26 to 27). After that, I tried to closely monitor myself. It's difficult for young women, because our breasts are dense & can be lumpy & there are often changes due to hormones & such. We just have to familiarize ourselves with our own breasts & their changes so they don't freak us out. But eventually, I started freaking out. So, I stopped doing self exams because I was terrified every time that I had found something. My sister pushed for me to have the prophylactic bilateral mastectomy. She presented information, put me in touch with some people she'd met in support groups who offered me their personal stories, & was very supportive. But I also had people in my life who told me that having the surgery was all sorts of bad things...crazy, drastic, immoral, unnecessary, against God's plan, was mutilating my body, would make it harder to find a husband, etc. All of that on top of my refusal to do self exams due to panic was overwhelming. So, I didn't do anything. And I lived in that denial for about a year & half.

In late 2009, at the age of 29, I found a lump in my left breast that turned out to be nothing. However, it shone some light on the realities of the BRCA gene mutation I have & prompted me to make one of the biggest decisions of my life. I'm a strong girl, but there was no way I was signing myself up for a battle with cancer! And I felt that by not taking action, I was doing just that...waiting for cancer. So, in early 2010, I took preventative measures & had a prophylactic bilateral mastectomy. Breast reconstruction began immediately & is almost totally complete (just need to get color tattooing to fill in my reconstructed nipples). Because being BRCA1 positive means my risk of ovarian cancer (the silent killer) is increased to about 50%-60%, the next step will be an oophorectomy (removal of the ovaries). Doctors recommend this surgery for women with the BRCA1 gene mutation be done around age 35, with close screening until then. A trans-vaginal ultrasound is recommended once yearly, if not every 6 months.

Some may think my decision to be drastic, but to those people I say, "Well, I'm here. So it's worth it." It's been almost a year & a half since I started this journey & I'll be 31 next month. I'm becoming more & more comfortable telling people about what I've done & feel an obligation to educate & reach out to others. I saved my own life. People in my position should know that they can do the same.

I'm what's called a previvor. And I'm a proud previvor. There is a huge community of us who have faced our risk of cancer, been empowered by information & inspired by the stories of others, & told cancer exactly where it can go!

I hope sharing my story is somehow helpful. I am more than happy to answer any questions, share photos of my experience, or simply talk to anyone who is BRCA positive, knows someone who is BRCA positive, thinks they might be BRCA positive, is or has chosen to become a previvor, or is simply interested in this topic. My name is Sarah & I can be reached here on this blog or privately at proudprevivor@gmail.com.