Many doctors in the first few years getting BRCA1 positive results, advised me to do double mastectomies and remove my ovaries ASAP. To a person under 30 who has no children its devastating. The options advised were have children close together or no children at all. After that, surgical menopause at such a young age could have like 10 other lasting health implications. There seemed to be no good decision.
One day I was talking to my sister about this and she invited me to come with her to an appointment so I could ask the doctors some questions. This is after I had my first child and my head was swimming with advice of others. I was overwhelmed with just one baby let alone just entertaining the thought of immediately getting pregnant all in the name of lowering my risk. Having surgery sooner did not seem like a great idea.
The oncologist has become like family to us. I broke down in front of her. She said very sweetly, "Know your risk, know the facts, and then...go live YOUR life. When you are ready, you will know." I have done just this. It has not been with some fear and trepidation. But I have lived on my terms as much as my brain and heart will allow. Now I feel as ready as I ever will. I've had my children and I am now entering my mid-30's. As my dad says, "I must feel the fear and do it anyway." We can do hard things. Courage is where strength and fear meet.
Wednesday, December 9, 2015
Etiquette for Health Professionals
A helpful list when dealing with a young woman with BRCA1 or 2 (or anyone in your practice):
1. Put your eyes back in their sockets. I may be young and I know I have huge risk factors. However, it is not comforting to be looked at as if I need a bomb squad in the room to diffuse my chest and ovaries.
2. Find the difficult balance between empathy/concern paired with a plan of action. Too much concern makes me feel pitied, or worse yet, that you have no idea how to help me and that I'm on my farewell tour.
3. I'm NOT sick! Mmmm'k pumpkin?!
4. Too many facts and pressure make me feel like I'm not a person. I do have options other than your obvious favorite.
5. Don't whisper to co-workers anywhere within earshot of your patients. Just don't.
6. Do not impose your preferences on your patient. You job is to inform and support the choices made. Allow me to feel that I am still in control of the choices I make in my life--for better or worse. If a person is too fearful they will rush a decision they aren't ready for. Worse, if they are stubborn, they'll wait too long.
7. I'm NOT sick! Got it?
8. Refer me to a specialist when I'm clearly educating you on the details of this gene. I'm not trying to be difficult. I'm being my own advocate. I know you must be hurting for patients with how you are trying to keep you under your care. Stop it. Get me to someone who can help me.
9. What and how would you tell your mom, sister, or friend?
Be sincere and a thoughtful listener who responds to questions. Do not rush. Panic does not help anyone make an informed choice.
10. I'm NOT sick! Good talk.
1. Put your eyes back in their sockets. I may be young and I know I have huge risk factors. However, it is not comforting to be looked at as if I need a bomb squad in the room to diffuse my chest and ovaries.
2. Find the difficult balance between empathy/concern paired with a plan of action. Too much concern makes me feel pitied, or worse yet, that you have no idea how to help me and that I'm on my farewell tour.
3. I'm NOT sick! Mmmm'k pumpkin?!
4. Too many facts and pressure make me feel like I'm not a person. I do have options other than your obvious favorite.
5. Don't whisper to co-workers anywhere within earshot of your patients. Just don't.
6. Do not impose your preferences on your patient. You job is to inform and support the choices made. Allow me to feel that I am still in control of the choices I make in my life--for better or worse. If a person is too fearful they will rush a decision they aren't ready for. Worse, if they are stubborn, they'll wait too long.
7. I'm NOT sick! Got it?
8. Refer me to a specialist when I'm clearly educating you on the details of this gene. I'm not trying to be difficult. I'm being my own advocate. I know you must be hurting for patients with how you are trying to keep you under your care. Stop it. Get me to someone who can help me.
9. What and how would you tell your mom, sister, or friend?
Be sincere and a thoughtful listener who responds to questions. Do not rush. Panic does not help anyone make an informed choice.
10. I'm NOT sick! Good talk.
I'm NOT sick
I'm NOT sick....at least not yet. My risks are high it is true. The piece of paper that changed my life says, "Although the exact risk of breast and ovarian cancer conferred by this specific mutation has not been determined, studies in high-risk families indicate that deleterious mutations in BRCA1 may confer as much as an 87% risk of breast cancer and a 44% risk of ovarian cancer by age 70 in women."
I first read this in May of 2008. I was 26 years old. My husband and I were sitting in my car in a nearby grocery store parking lot. I don't remember why we opened it there. I think it was because I couldn't bear to open it alone and I drove to the school where he worked and this was the closest place we could have privacy.
We had been married 11 months. This was years before Angelina Jolie made this a much more recognized issue to the public. I felt alone and scared. I didn't know anyone my age with this. Actually, I still don't. My biggest hope was that I would get tested and it would come back negative like it had for my middle sister. Then I would just have the same risk as the general population. But, no. I had it. Now what.
In the years that followed, I had many doctors/nurses/staff that would look at my chart, look at me, look back at my chart and forget all the professionalism they may have had. I felt as if I walked in to their office with three heads and a death sentence rather than a predisposition. My original doctors would have had me do every surgery imaginable the next day. For many, I was the youngest person they had ever met that had tested positive for BRCA1. I wanted to scream, "I am NOT sick." A ticking time bomb, yes. Sick, no. I hate being treated as if I am, but I am so thankful for those professionals that encouraged me to be well informed and did not pressure me into immediate action. That little piece of paper from Myriad genetics began my journey.
I first read this in May of 2008. I was 26 years old. My husband and I were sitting in my car in a nearby grocery store parking lot. I don't remember why we opened it there. I think it was because I couldn't bear to open it alone and I drove to the school where he worked and this was the closest place we could have privacy.
We had been married 11 months. This was years before Angelina Jolie made this a much more recognized issue to the public. I felt alone and scared. I didn't know anyone my age with this. Actually, I still don't. My biggest hope was that I would get tested and it would come back negative like it had for my middle sister. Then I would just have the same risk as the general population. But, no. I had it. Now what.
In the years that followed, I had many doctors/nurses/staff that would look at my chart, look at me, look back at my chart and forget all the professionalism they may have had. I felt as if I walked in to their office with three heads and a death sentence rather than a predisposition. My original doctors would have had me do every surgery imaginable the next day. For many, I was the youngest person they had ever met that had tested positive for BRCA1. I wanted to scream, "I am NOT sick." A ticking time bomb, yes. Sick, no. I hate being treated as if I am, but I am so thankful for those professionals that encouraged me to be well informed and did not pressure me into immediate action. That little piece of paper from Myriad genetics began my journey.
Why I Dread Octobers
I remember one fall season when my sister was recovering from cancer, and I had no idea I was BRCA1 positive, two dear graduate school wanted me to run a 5k with them. It was for breast cancer and they thought that I would be excited to join them since it was so relevant in my life at the moment. I wasn't.
Let me be clear. I have the utmost gratitude and respect for all cancer and breast cancer organizations. I hate October though. It just reminds me vividly more than any other time that I could be next. It reminds me that I have such a high risk, that I could have chemo, or be bald young mother wondering if I will live to see my kids grow up. Have I done enough? What about how poorly I am able to take care of myself with three young children? I should exercise more, drink green smoothies, get a full 8 hours of rest, but that seems impossible. I'm living moment to moment in my life many days.
I think when I've come out on the other side, this may change. I know many gain strength from October. This is not true for me yet. I hope it will be a welcome change in the future.
Let me be clear. I have the utmost gratitude and respect for all cancer and breast cancer organizations. I hate October though. It just reminds me vividly more than any other time that I could be next. It reminds me that I have such a high risk, that I could have chemo, or be bald young mother wondering if I will live to see my kids grow up. Have I done enough? What about how poorly I am able to take care of myself with three young children? I should exercise more, drink green smoothies, get a full 8 hours of rest, but that seems impossible. I'm living moment to moment in my life many days.
I think when I've come out on the other side, this may change. I know many gain strength from October. This is not true for me yet. I hope it will be a welcome change in the future.
Decisions, Decisions: an analogy of the risk factors
Many people who have read about Angelina's preventative surgery or halfway listen to the news think that her actions were too drastic. A publicity stunt. I want to scream, "NO! That's what every doctor I've ever talked to since 2008 has recommended. She's doing something hard. These preventative surgeries virtually guarantee that she won't die from this. She is my hero. She gives me hope." Perhaps an analogy will help clear things up.
Let's say that you get the news that your daily commute to work is not as safe as you thought it was. You get a notice that tells you if you continue on this road you have an 87% chance of getting hit by a bus (breast cancer) or 44% chance of getting hit by a train (ovarian cancer). Reading between the lines you recognize that these may not kill you, but man that's pretty high! Especially since my sister got hit 36 minutes into her drive and my dad at 50. The memo also indicates that you have the option of taking a detour route that lowers your risk down to 2% of ever having an accident.
The thing is that road is full of pot holes, bumpy, takes longer, is uncomfortable, and you are the only one driving that way. Plus, you have to take your three children ages five and under in the car with you. Sound fun? Besides all this you see everyone else gets to use the freeway. Surely, there are accidents for them as well, but not nearly as high a risk.
For a moment, you consider just getting extra mirrors, keeping tuned to the traffic reports, etc. But, the memo clearly indicates that these measures may make you feel safer but are not proven to to decrease the likelihood of the train scenario under it is like right over your shoulder (ovarian screening measure of ultrasounds and CA-125 have lots of false positives AND negatives).
You think, "I just started my drive. I'm going to be extra careful and wait for a while." You drive like this for 8 years. It slowly makes you go crazy because there are enough close calls and blind spots to make your previously care-free commute become a white-knuckled stress fest.
Enough. I have had this heaviness for long enough. When someone gives you a chance for another route, YOU TAKE THE DETOUR! After surgery, I'll be down to 2% risk!!! I'll take those odds, thanks. This is the intersection I now find myself in. I'm about to take the off ramp onto this hard bumpy, lonely road, but I will make it on the other side ensuring my safety. My children and husband have me around for a long time to come.
I think about all the other medical problems people have in their families. Some have ALS (no cure), some have an unexpected head injury that handicaps them for life, etc. I have a unique hand dealt to me. This gene is a vastly studied area within breast cancer research. I feel blessed to have a choice BEFORE getting sick. I have a chance to stay well. Knowledge is empowering and crippling all mixed into one. It's time though. It's time.
So for anyone who misunderstands, this decision has been a tough thing to live and wrestle with. I do this for me. I do this for my family. It takes courage to have major surgery and reconstruction when you aren't even sick. But, as any mother of young children knows, I have NO TIME to get sick do chemo on top of surgery, have it reoccur, and possibly need radiation that would complicate the reconstruction process. I have an 87% chance of needing this surgery anyway. I might as well skip a vast majority of the other junk, right? That's how I see it. I get to do this on my own terms right now.
This is NOT a simple "boob job" with health benefits. It is full on double mastectomies my friends. I'm not getting implants and having tissue expanders for months because I am vain. I want to look somewhat normal for the vast majority of years I have left. No matter how they turn out, they are "foobs" (fake boobs). They won't look or feel the same. By journaling and living for the past 8 years with this fact, I've finally come to terms with this. Thank you for reading, understanding and supporting me through this.
Why Blog?
It's a good question. I am a private person about many things. Other times I feel the need to be understood and also support others who may be feeling similar things. When I write, I feel much more complete in my thought process than when people surprise me with spontaneous questions. These are often at the most unexpected moments or when I really don't feel like talking about it. I don't want to rehash things over and over. So if people really are curious I refer them here. I have lived long enough to know that the news will get around eventually, so I might as well have them get the facts straight and hopefully help others along the way.
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