This is My Story…
There it is in black and tan, the piece of paper that started me on this journey. Who knew a stupid piece of paper could hold such heavy news? Let me tell you how that piece of paper changed it all.
How did that piece of paper fall into my hands?
My Father. Yup, you read that right, it was my Dad. He’s awesome. Three of my Dad’s sisters had breast cancer, and one passed away from it. RIP Aunt Joyce, mad love.
A few years ago, my little sister had seen a Dr. for some issues she was having at the time. After telling the Dr. her family history he told her it may be a good idea for my father to have genetic testing done. She told my Dad and he agreed to have the testing performed so that my brothers and sisters and I could know if we have the possibility of having a gene mutation. He went to see a genetic counselor and had the blood test done. It takes a few weeks to get the results of this testing and while he was waiting for his results he didn’t tell any of us that he was doing this. He is BRCA1 positive. My poor Dad was crushed. He felt like he was responsible for the fact that we could have a higher chance of having breast cancer. Your genes are your genes, you can’t change them.
I choose to look at it differently. He gave me a chance, a fighting chance to try and prevent myself from getting breast cancer. The genetic counselor helped him put together a letter to send out to my siblings and I. My mom called us all and gave us local genetic counselors and places we could have the labs drawn if we wanted. At this time I was living in NC and luckily all of the people I needed to see were just down the street. I set up all the appointments and went from there. I wasn’t nervous about what my results were going to say because I knew I was positive before I went. I just had a feeling. I mean, I was a 20 something female whose worst medical experiences were an appendectomy and having my wisdom teeth out. Did I mention that I had 5 wisdom teeth? So why not a genetic mutation?
I’m easily distracted as you will find if you follow me. Back to the point…
In April 2012 I met with my genetic counselor. I find that to be a funny title. How do you counsel genes? Whatever. Anyways, that appointment was EXHAUSTING. We made a family tree, how did my mother’s mother’s mother die? Well shoot, I don’t know. We sat there and hashed out the health status of all of my relatives. We talked about the numbers if I would turn out to be positive.
“Traci, did you know that if you you are BRCA1 positive that this mutation confers up to an 87% risk of breast cancer and a 44% risk for ovarian cancer by the age of 70?”
Uh, no, but thanks for that, I think I just threw up in my mouth a little. Those are some BIG numbers not working in my favor. We continued our discussion and then she sent me to the lab, I had my blood test drawn and she told me that she would be in contact with me in the next few weeks.
So, I waited….
and waited….did I mention I am not good at waiting? Tragic Flaw.
Then I get a phone call,
“We need to schedule an appointment for you to come on in to talk”.
If that doesn’t scream YOU’RE POSITIVE I don’t know what does. So back to the genetic counselor I went. We discussed my results and all of my options. I remember looking at this chart:
NO BRAINER.no brainer. No brainer.no brainer.
I left the doctor’s office that day knowing that sometime in the future I was going to have a mastectomy. The genetic counselor set up an appointment for me to see a high risk oncologist to talk about options like Tamoxifen etc., etc. So I went. I was not interested at all in taking Tamoxifen.
That ended that.
Unfortunately in my family I am not the only one dealing with this. My Dad carries the gene. 50/50 for us right? Yeah,no.
- Michael (my older brother, and the smartest 😉 ) is positive. And yes, he gets mammograms. I love that he found out if he carries the mutation so that some day he will be able to arm his daughter with the tools necessary to deal with this. You are a wonderful father.
- Annie (my older sister and the reason for this blog) is positive. She will eventually go through this same thing. I hope this gives you a better idea of the process. She too has two little boys and will be able to help them in their journey. Saying you are a good mom is like saying the sky is blue. Duh.
- Patrick (my little brother) – decided not to get tested. I get that. Is knowing a blessing or a curse? It’s different for everyone. Pat sent me a text today showing me his arm where he is sporting a hot pink bracelet in support of me. Awesome Pat, awesome. Mad love.
- Amy (my little sister) – negative. Whew! I love this for her. She will never have to worry about passing this gene on. It stops with her. Although she is negative, I know she feels the burden as much as Annie and I do,and I couldn’t love her more for that.
Did I mention that I have the most fabulous siblings? They make this life worth living. Love you all.
While all of this is going on, it just so happens that my husband got a job in Pennsylavania. This officially put Operation Take ‘Em Off on the back burner for a while.
one month….two months….three months….New Year….four months….five months…six months…seven months….
Operation Take ‘Em Off resumed.
My GYN referred me to a specialist in Philly. That appointment is one I will never forget.
A little background info about me is necessary. When it comes to showing my body, I’m as modest as they come. I don’t wear shorts. I hate it when my legs stick to chairs. I definitely would never just show you my boobs for shits and giggles. You are talking to a girl who thinks a V-neck is showing a lot of skin. Hah.
So this appointment…my husband and I truck it to Philly, check in, and wait about 15 minutes until we get called back into an exam room. Not bad, this is starting out great! A nurse comes in, takes my vitals, then gives me a little pink paper gown that opens in the front. This paper gown isn’t a gown, it’s a little tiny shrug. My whole midriff is hanging out at this point. Ok, I can handle this, so far so good. The doctor comes in and the first thing he says to me is “I have a resident with me, is it ok if he comes in too?” Of course he does. I wanted to say no so badly, but I went to nursing school, I remember being the student. In he came and yup, he was attractive. Why couldn’t he have hair coming out of his ears and warts all over his face? Not.my.lucky.day. Now it’s me sitting on the exam table (in my pretty pink shrug mind you), the doctor to my left, the resident to my right, and my husband sitting in front of me. Oh happy day, lucky me…can somebody say awkward? At this point in the process I start to sweat, and it’s not the one little drop on your forehead kind, it’s the stress sweat that covers your body in a nice sheen. Great, now I smell like a hoagie. Borderline best day of my life. NOT. And it only gets better. The exam hasn’t even started yet. When it did, they took a tag team approach. I had an old guy on my left doing a breast exam, a young cute guy on my right doing a breast exam, and my husband sitting in front of me watching this whole ordeal. Somebody shoot me now, I’m sure my face was the color of a beet. They finish fondling me and proceed to talk about my options. I explained that in order for me to be able to get approved for FMLA at work I had to wait until June to have the surgery. I was told to meet with the plastic surgeon they normally work with and to call them back. No problem, or so I thought…
It took me a month to get an appointment at the plastic surgeons office. This appointment wasn’t as awkward as my first. The only uncomfortable part was when the nurse asked me to take my clothes off from the waist up and instead of leaving the room, she watched me undress. Weird. Then she took pictures. Awesome. By the time the surgeon came in nothing could surprise me. Yet again I was sitting in a pretty pink shrug while talking to an MD. I remember thinking f#*% it! this dude sees a lot of boobs what does he care? And he didn’t (or at least he didn’t make me feel self conscious). After examining me he told me I had 3 options:
- An implant only. Pros – easier recovery, quicker recovery, less invasive. Cons – there will be no natural tissue on top so it will look like I have two mounds sitting on top of my chest (the opposite of natural looking), there is a possibility that my body will reject the acellular dermal matrix that will be implanted along with the expander. It’s my understanding that acellular dermal matrix provides a scaffold within which a person’s own cells can repopulate and revascularize the tissue. When I had my appy, my body rejected some of the stitches they put in. Probably not the best idea.
- Latissimus dorsi flap with expanders. This is where a small football shaped flap of the latissimus dorsi muscle on each side is cut out and brought around to the front of the chest wall. Vessels are reattached for proper blood flow. An expander is placed underneath the chest wall and slowly expanded over a period of time. Check out www.breastreconstruction.org for a better explanation. Pros – it’s my own tissue, most likely no rejection. A more natural looking breast. Structurally strong. A quicker recovery than an abdominal reconstruction. Very low chance of flap failure. Cons- a scar on each side of my back about three inches long. Two drains coming out of my back for a time period after surgery. The possibility of a seroma in those areas.
- DIEP flap. This is where the lower abdominal skin and fat is taken along with the vasculature. An incision is made from hip to hip, tissue and possibly muscle is taken and implanted in the chest area. Pros – a natural looking breast. Tummy tuck along with a reconstruction. Cons – a huge scar. A higher risk of failure. A few nights in the ICU. Longer recovery.
What to choose, what to choose. The plastic surgeon told me I didn’t have enough abdominal fat for the DIEP flap alone so if I were to choose this option I would need to have an implant as well. I am a D-cup now, and the bigger the breast the thinner the skin surrounding them. Makes sense. This deterred me away from getting an implant alone. My chest would be significantly smaller than they are now and I don’t want that. Cross that one off the list. Lat flap or DIEP flap? hmmmmmm. This was an easy choice for me. I do not want a scar stretching across my lower abdomen. This may sound vain, but I want this to look as good as it can. A big scar is not appealing to me. I had an abdominal CT at the request of my surgeon anyways and I only had one viable perforator. This surgery is NOT physically an option anymore. Lat flap it is. I am good with this, I am comfortable with this. Onward….
I called back to the breast surgeon and it just so happens that he was leaving the surgical realm and his replacements would not be starting until August. Here we go again with the waiting.
and w. a. i. t. e. d.
and w. a. i. t. e. d………………
August came and I called. I had to wait for their credentialing to go through. September came and I called again. Great news! I got an appointment at the end of September. Holy crap, this is taking forever. Come on Trace, you’ve waited this long you can wait a little bit longer.
I met with my new surgeon. She is awesome. You know why I like her? She talked to me when I had my clothes on. She came in, did the exam, let me get dressed, and then came back in to talk about everything. She answered all of my questions and I really felt like she was listening to me. Never once did I feel rushed. After the appointment the receptionist told me that someone would call me on Wednesday (this was Monday) to set up my surgery date. Wednesday came and Wednesday went. No call…typical. I don’t like to be pushy but the ladies at work convinced me to call on Thursday. No answer. I left a message. Aaaaahhhhhhh! Friday comes and the surgeon calls! Yay me! She said she spoke with the plastic surgeon and everything is good to go. Someone will be calling me on Monday to schedule. Torture. Monday, no call. Tuesday, no call. Wednesday, I call, leave a message. Thursday, no call. Friday, no call. WTF?! Monday again no call. Tuesday, I call, leave another message. Seriously people, this is getting ridiculous. Wednesday, no call, Thursday I call and the surgeon answers. She got her secretary on it and low and behold I got a date! November 13th. This is really happening.
Point of this dissertation? This is my story, and it’s only the beginning.
Thank you Dad. I don’t think you will ever truly know what a great opportunity you have given me. I am truly blessed.