A Walk to Remember

I used to be one of those people who always wore pink in October. I’ve run in multiple Race for the Cure 5Ks, and I’ve even walked 20 miles a day for three days straight at an event coincidentally called 3-Day Cure. I think these types of events give people a sense of purpose by allowing them to remember their loved ones, and they can provide comfort to some by being surrounded by those in similar situations.

My best friend and I at the end of a Race for Cure event

There was a time I thought I was doing enough when it came to raising awareness and money for cancer research, while also honoring my family history. However, 2012 was a rough time for my relationship with the pink ribbon. For one thing, a lot was going on that year politically concerning breast cancer. I also felt like I had outgrown just doing enough. After all, I wore the pink, ran the all the races and walked for three straight days but my mom still died. Again, I am not saying those type of activities aren’t important, but at that point in my life I felt like I needed something more.

I decided to search for organizations that were more focused on education and not just another event, one not so focused on awareness. After a whole lot of research, I came across the National Breast Cancer Coalition (NBCC). This is exactly what I had been looking for. This organization works with people from all different organizations, focused on breast cancer research, to work together toward a common goal. They call this goal Deadline 2020, which aims to eradicate breast cancer by January 2020.

I went to my first conference in May 2012, and I was blown away. It was amazing to be surrounded by men and women who have dedicated their lives to finding a cure for breast cancer. I was inspired by everything I learned, so much so that I applied to NBCC’s program called “Project LEAD Institute”. The institute was a 5 day intensive scientific training program focused on everything breast cancer. We were in class for 8 hours a day, participating in lectures, discussions and assignments with the best researchers and medical professionals from around the globe. I realized then, the only way to help people in my state wasn’t to organize another race, but to provide education.

What was also amazing is that through these conferences and programs I now had a vast network of women with experience and knowledge. I started by contacting all of them and telling my story: I am 30 years old, BRCA positive, never been diagnosed with cancer, but my mom was first diagnosed at 36. I wanted to hear from them, I wanted to hear what they would do in my situation. I learned in graduate school to interview a lot of people and see how answers overlapped in order to piece together a consensus. So that’s what I did. Ultimately, I knew what needed to be done, but I needed to figure out how time sensitive it was and it what order it needed to happen (i.e. could surgery wait until after kids or did I need to do it now?).

So as I did my research and reached out to people in my network, here are a few tips that really helped me out along the way:

1. Educate yourself. Don’t be afraid to go to conferences, meet people, research organizations that support what you are interested in. Breast cancer is a complicated disease with many variables. Understanding the disease as a whole really helped me get a solid foundation while reading and doing research. Knowing the basics and what questions to ask also gives you more confidence when talking to medical professionals.

2. Talk to people. Persistence is important because it often takes time to get a hold of the right person. Don’t get deterred or give up. Talk to people who have already been through a similar situation, talk to a genetics counselor, talk to oncologists. I think this will help you start putting some the pieces together. The more information you have the easier it will be to make these very difficult decisions. If you are like me, you may know what needs to be done and it’s just a matter of learning about the different options and determining the best path for treatment.

3. Get in the habit of keeping good records. E-mails, business cards and medical information are so important. If you have a family member who has been diagnosed in the past, make sure you can obtain their medical records. If they have completed a genetic test, try your best to get an official copy (this means the actual genetic report from the lab that ran the test which lists out exactly what was found). Every doctor receives a copy they can give you (more on this later). Start collecting records for yourself, all your mammograms, MRIs and ultrasound reports. Keep a digital and hard copy. All of these things will be important later as you and your doctors determine the best course for treatment, so the sooner you can start collecting the information the better.

The thing that stands out the most to me from all of the conferences and all the conversations is the importance of being proactive vs. reactive to my situation. I need to remember that I am very lucky to be in this position. I have the opportunity to make decisions about my health prior to being diagnosed with cancer rather than after the fact. Because my mother was so young when she was first diagnosed, and cancer tends to appear earlier in the next generation, I have decided to have the surgery now to dramatically decrease my chances of developing cancer. This means I am having a double mastectomy.

More on that to come.

The Kitchen Table

My mom used to tell me that if she hadn’t literally seen me come from her body that she would never believe the two of us were related. Others would share that same sentiment my entire life. She was taller, had a wide frame and was of a heavier build. I am petite, with a small frame and short. She had brown hair and I have blonde, you get the idea. There were specific hereditary attributes about my mother that I didn’t have, so there was always a part of me that assumed I didn’t share the genetic mutation with her. It was a ridiculous non-scientific assumption, but it was just one of those things you tell yourself to feel better.

I remember, in 2008, my mother sitting me down at the kitchen table to explain genetic testing and that scientists were starting to discover specific genes linked to breast cancer they were calling “BRCA”. Back then, genetic testing was very confusing because insurance companies could and would drop you if they determined this to be a “preexisting condition”. There was, however, discussions going on in Congress at the time to get that changed (which they did). My mother did a great job of keeping herself informed and helped to educate me on how I should navigate my own situation.

I always knew my own journey had to start with me being tested. This would greatly affect my next steps in terms of being proactive about my health, and it would determine what kind of surveillance I needed. For people who have a heavy history of breast cancer in their family, there are programs known as “high-risk” surveillance. This means that you get a mammogram, MRI, or ultrasound (depending on doctor recommendations and your own personal decisions) every 6 months instead of once a year. It also means not waiting until you’re older to start getting regular mammograms.

Because my mom was BRCA positive, I had a 50/50 chance of getting the gene myself. Looking back now, I honestly believe I would have been more frightened if I had tested negative for the gene. I know it sounds crazy, but because of the education my mother gave me as well as my own research, I felt more prepared to test positive. Testing as a “true negative”(An individual who is not at a higher risk for breast or ovarian cancer than the general population) for someone with my history, felt like a ticking time bomb just waiting for the cancer news to drop. For many people, testing as a true negative leads them to believe they are “safe” and their chance of cancer drops. While it’s true your risk does go down if you do not carry the gene, there is still a large percentage of the population who get diagnosed with cancer without the gene and without a family history of cancer. So the advice I would give to anyone is never assume and always be proactive. Make sure you are getting the appropriate surveillance and that you pay attention to your own body. No one cares more about your health than you. Period.

My mother got tested in 2008 and passed away in 2011, but I did not get tested until 2015. So why did I wait so long to get tested? Well to be honest with you, I wasn’t in a hurry. It sounds weird for me to say now because I would encourage any woman with my family history to get tested as soon as possible. In the years following my mom’s death, I paid close attention to my body, I was healthy, ate relatively well and exercised regularly. I am also not obese, a smoker or an alcoholic. There wasn’t anything about my lifestyle I could change to offset what was already written in my DNA. It wasn’t until I turned 30 and got married that I finally decided it was time to be proactive and get the answers that would affect so many aspects of my life going forward. It was no longer just about me. Testing positive would determine a lot of things, specifically a time table for my husband and I to have kids. These were now the kinds of decisions we were going to have to make together.

I can’t say I was completely shocked to hear the news that I was positive, although it still stung. It reminded me of that feeling of knowing for sure you failed a test and then having it confirmed when you actually see that “F” written in red at the top of the paper. I really hated the idea of having to tell my family the news. You have to understand that I am the type of person that always wants to take care of business without having to worry anyone else. But I knew that this wasn’t the kind of issue I could just “handle” all by myself. I would have to tell my new husband of not even 5 months that my chances of getting cancer just increased astronomically. How would he react? I would have to tell my father, who already lived through the nightmare of losing his wife, that his only child unfortunately had more in common with her mother than she thought. Would he be able to handle it? And finally, should I burden the rest of my family and close friends with this news right around the holidays?These are the kind of questions that ran through my head over and over as I digested the results of my test. Of course I knew that my family and friends would support me, but it was still so hard for me to burden them.

I am the type of person that likes to know exactly what I am dealing with so I can do research, make plans and make the most informed decisions. Learning that I was positive meant I now had a sense of direction. This was just the beginning. It’s time to start rolling out the plan my mother helped me make all those years ago at the kitchen table.

First Things First

Let me start by saying I am so grateful for all of the love and support I have received this past week after my first post. For someone who is struggling with decisions such as these and dealing with the unknown, comments like the ones I have received are so powerful. It’s hard for me to tell parts of my story without getting a bit technical, but I hope to explain it in such a way that won’t gloss over a whole lot of facts and information.
 
What does BRCA mean?
 
There are several known hereditary genetic mutations that are linked to cancer. Of the BRCA genetic mutations there are BRCA1 (Breast Cancer 1) and BRCA2 (Breast Cancer 2). I have BRCA1. This does not mean I have cancer. I repeat, I have NOT been diagnosed with cancer.

Source: Florida Hospital Cancer Institute, Susan G. Komen, Breast Cancer Site

What is a genetic mutation?
 
Your body is made of a certain genetic code that helps tell how things should be developed and how cells should grow, divide and die. A normal genetic code is a sequence of 3 letters that contain instructions. When that code is affected it is known as a mutation.
 
Picture it . . .
 
So let me put this in a way that is easier to understand. A normal genetic code put into a sentence might read, “THE FAT CAT SAW THE RED DOG RUN OUT”. A genetic mutation would mess up the letter sequence. If you take the “AT” out of “FAT”, the mutated code would read, “THE FCA TSA WTH ERE DDO GRU NOU T”. This statement no longer makes sense, and it would be the same for the body if it was trying to read mutated genetic code.
 
How is it passed?
 
Both men and women can carry the gene and can also pass it to their offspring. This is important to note because breast cancer is so prominent in women, men do not often consider their own family history when it comes to cancer.
 
How can I tell if I have the gene? 
 
You will need a genetic test to determine if you have the gene. This can be done through a blood test or a simple saliva test.
 
Is this a big deal?
 
The short answer is, yes. BRCA1 and BRCA2 are not common gene mutations. However, women who have the gene are at a higher risk of developing cancer than those without. Many sites that specialize in gene and cancer research report different percentages for those who are BRCA positive developing cancer. But the takeaway from all of the information out there is simple, if you are BRCA positive, your risk is higher than that of the general population.
 
Should I be tested?
 
I am a firm believer in knowledge is power. But because having the gene doesn’t mean that you will for sure develop cancer, the knowledge from a genetic test does mean making some important decisions about the future of your health. Some people don’t want to know, and that’s okay. It is a calculated risk and really depends on if you want to be proactive when it comes to the increased risks of cancer due to genetic mutation. It is so important to know your own family history of cancer and to consider your personal health. Both women and men, who have a heavy history of breast cancer in their family, should seriously consider getting tested.
 
So now what?
 
And that my friends is the main reason I am sharing my story with you. There isn’t a right or wrong answer to this. There are so many questions to answer for yourself, like . . . Should I get tested? Do I want to know if I am BRCA 1 or 2 positive? If I am, where do I go from there? All of those are great questions, unfortunately, only you can answer. I am finding the older I get, the harder it is to make those life changing decisions. But here is what I do know, if you ever get a chance to be proactive in your health you should do everything in your power to take advantage of the situation. Most people don’t get that opportunity. When asked by an oncologist what my ultimate goal was when doing my research and formulating a plan, I looked her straight in the eyes and said, “To not get cancer.”

A Time for Everything

A Time for Everything

First and foremost I would like to welcome you to my story. My name is Sarah and I am 31 years old who is also BRCA1 positive. For quite a while I have been gathering stones (more on that in a minute) in an effort to make the best possible decisions for my own situation. My goal is to share the knowledge and information I have gained in the hopes of helping other women, similar to me, find humor and comfort in their own journey.

Upon learning that I am BRCA1 positive and realizing that I face many difficult decisions when it comes to the future of my health and body, I sought comfort from my husband, my family and a few close friends. I also found comfort in a particular passage in the Bible, Ecclesiastes 3:1–8, A Time for Everything. These verses seemed to speak directly to my soul. I decided to use this passage as sort of an introduction to myself and provide some insight into my decision making process.

There is a time for everything, a time to be born and a time to die. I was born in Tulsa, Oklahoma and spent my entire childhood in Oklahoma City, Oklahoma. Obviously, I do not know when I’m going to die, or have any intention of dying soon, but I am no stranger to death, again, more on that later. A time to plant and a time to uproot. My husband and I have been married for about a year now and we currently live in Tulsa, Oklahoma. It was a very difficult decision for me to uproot my life from Oklahoma City, but in doing so, I met my husband and now I am so thankful that I did.

There is a time to kill and a time to heal. To this I will say that the healing process has been a major factor in the decisions I have made up to this point. Obviously, I want to do everything the right way and reduce my risk of getting cancer as much as possible. But as I go into more details of the surgeries I have selected and decisions that have been made you will see that recovery time and the healing process definitely played a factor.

There is a time to weep and a time to laugh, a time to mourn and a time to dance. This is the part where I tell you how much cancer has affected my life. My mother was first diagnosed with breast cancer at 36. In 2006 she was confirmed as being BRCA1 positive. In 2008 she had a brand new occurrence and discovered that her cancer was triple-negative (known as TNBC, it does not contain genes with hormone receptors which makes it more difficult to treat). She immediately had a double mastectomy and hysterectomy. Unfortunately, those proactive steps were taken too late, and in 2010 she was diagnosed with stage 4 triple-negative breast cancer that metastasized through out her body. She died a year later at the age of 56. I mourn the loss of my mother, I weep for her. But I also remember how often she made me laugh.

There is a time to scatter stones and a time to gather them. I told you I would come back to that phrase. Throughout this entire process, I always felt like every article I read, every new piece of information I researched was another stone I was gathering that I could use to protect myself from this awful disease that I watched take my mother away from me. A time to search and a time to give up. I, like many women, refuse to give up when it comes to cancer. I will continue to search for new ideas, new information to help me in the decision making process.

There is a time to be silent and a time to speak. I have no desire to be silent on this issue. I want my story to be a resource for other women who are similar to me in that they are young, have never been diagnosed with cancer but want to learn more about BRCA, genetic testing and breast cancer. And if you have found that you are BRCA positive, I want to provide a safe place for those to learn from my experience and know that you are not alone.

I hope that wherever you are on your journey you will follow me and that my scattered stones might help you along the way.