My last doctor visit I was asked if I would speak to a woman having my same procedure in the next few weeks. I was shocked and honored that they felt I was improving so well, that I could share a bit of my experience. I spoke to her today and I felt that perhaps I should write about it as well. I know I have family and friends checking in and reading this blog but since I do not have thousands of friends, I think there may be some strangers reading this and if I can help....here it goes.
Getting a BRCA (1 or 2) diagnosis is startling to say the least. I didn't even know what it meant. I met with a genetic counselor and although she was very nice and was there to answer questions, I didn't even know what to ask. She handed me information for a hysterectomy and bilateral mastectomy. All I could think of was, "What the hell is happeneing, I DON'T HAVE CANCER!!!!!" Little did I know that it wasn't a matter of IF I got cancer, it was a matter of WHEN.
After crying for hours I called my primary physician, Dr. Jon Cole as well as my gynocologist Dr. Jon Wheeler. I met with them both and they agreed, yes, I needed to address this and soon.
I am BRCA 2 positive. I was born with this gene; a glitch in my DNA. I am thankful I live in a time where a simple albeit expensive blood test can tell me what my future would hold. Something I was also shocked about it that this gene is from my father's side. Most people think you can only get breast cancer if your mother or a female in your family has had cancer. My father is also BRCA positive; even though he has not been tested, you get 50% of your genes from your father and 50% from your mother. My patrnal grandmother had breast cancer in her 30's and my father's sister got breast cancer at 41. These ages are two red flags! Her daughter, my cousin, is also BRCA 2 positive. So there is a chance that my brother may also be positive and that I have passed this gene to my son. A BRCA positive gene for a man gives them a higher chance of breast cancer too as well as prostate cancer.
A BRCA 1 diagnosis has a greater focus on ovarian cancer along with breast cancer. A BRCA 2 diagnosis has a greater focus on breast cancer, and then ovarian cancer.
So now that I have had my bilateral mastectomy, I do have to address my ovaries. This will be next year as I cannot even image yet another surgery right now. I still have a few surgeries to complete my breast reconstruction. As I have written, what I am feeling now, I do not want anyone to touch me right now.
Dr. Jon Cole is an amazing doctor who always gives me so much time. He met with me initially and he said, "You are NOT getting cancer." He gave me referrals and I was on my way to look for my "team." And you do need a team. I had one nurse tell me, "Oh you just find a plastic surgeon and you"ll be fine." Uh, NOT. This is no slam dunk. I also heard from another doctor that she would have me in and out in 3 hours. This was a mastectomy with implants.
I met with Dr. Robert Cole, yes they are brothers. He is a general surgeon and a great one at that. He removed a melanoma for me years ago and I knew he was going to be my surgeon. I met with various plastic surgeons in Orange County as well as Los Angeles. I just didn't find a good fit with doctors in my home area, OC. Or if I liked one doctor I didn't care for who they worked with. Then again on the advice of Jon Cole, I met Dr. Jay Orringer, my plastic surgeon. He was the only doctor that offered a DIEP flap. This is where they take your own tissue for immediate reconstruction. Initially he said it would be a 10-12 hour surgery. I thought OMG, I DON'T HAVE CANCER, this isn't necessary. But after much consideration and meeting with even more doctors, who didn't perform this surgery said, that I would be a good candidate for it, if I found a doctor good enough to do it. I needed doctors that had done this thousands of times. And Dr. Orringer was my guy.
Dr. Orringer also felt that I needed a microsurgeon on my team. He is the one that reconnects all of my blood vessels after the tissue transfer. And this amazing man is Dr. Jay Granzow. He is so accredited it's stunning. When I met with Dr. Granzow, he agreed with Dr. Orringer and thought the DIEP flap would be the best FOR ME.
I was diagnosed with BRCA in November 2010. I was on the fast track because I'm a single parent to at that time a 17 mos. old boy. My head was spinning, meeting with doctors, having a breast MRI, then another mammogram. I also had to address my ovaries, so I had to have blood tests, CA-125 in particular (which throws off false positives) but both times they came back negative. My next CA-125 be will in February next year. I also had to continue meeting with my gynocologist and had vaginal ultrasounds. I also had to have a hysteroscopy before my breast surgery. I still have to be monitored until I address my ovaries. I was also taking the birth control pill again as per my oncologist to protect my ovaries, but had to get off that a few weeks before my surgery so that I didn't get a blood clot. It was just one thing after another and constant monitoring. I was supposed to have surgery in February 2011 and after numerous panic attacks I knew I wasn't ready. So although I was already living with doctors, I needed more time. So I chose to continue being monitored which meant I had to repeat many of the same tests.
September 12, 2011 ended up being my surgery date and I knew it was time. My 10-12 hour, then 15 hour surgery, ended up being 18 and 1/2 hours. I will forver be grateful to Dr. Robert Cole, Dr. Jay Orringer, Dr. Jay Granzow and all the doctors and nurses and staff at St. John's Hospital in Santa Monica.
A BRCA diagnosis is not to be taken lightly. Again while I did not and do not have cancer I have a wonderful oncologist that has made me aware of other cancers because of the BRCA, one being pancreatic cancer. I will continue to have my pancreas checked every year and I will also have to be diligent with colon screening (I've already had 2 colonoscopies). Please don't listen to what the news says about cancer screening and the ages you need to start getting monitored. If you have a gut feeling or have a history in your family, take control and do something about it.
I have said a lot tonight and this is still just the cliff notes of my year. I never thought that this would be my movie. Some have called me pro-active and brave and gutzy. But really I'm just a Mom who wants to continue being a Mom. And I also have a pretty tough Mom who would kick my ass if I decided to stick my head in the sand. For anyone newly diagnosed with BRCA, take charge. You can make a difference. F*^#k Cancer. Believe me, if I can do this, so can you. You are not alone.
God Bless You, Janeen
