Do you remember in my first blog post, I said I would offer up some tips from my experience with these preventative surgeries? Well, get ready for your first one. Are you ready? OK. Before you even THINK of getting your primary care physician to order the test to see if you even have the genetic mutation, make sure you have a rock solid health insurance policy. I know Healthcare has been a big topic of conversation lately, and honestly you don’t realize how broken our system is until you have to go through major surgeries. I imagine how much simpler this already difficult process would be if Humana, my health insurance company, actually took care of me. On their website they say “We strive to be your lifetime partner in reaching good health.” Well, that is only true until you ask them to actually pay for something besides a yearly physical or a trip to the clinic for a cold. The level of frustration I have reached from dealing with them is enough to make me want to scream. Really, after talking to other people going through this same process, they are having the same problem with other companies. It is a matter of greed and health insurance companies not wanting to affect their bottom line by paying for major procedures (ones that could save TENS OF THOUSANDS down the line by preventing the disease from happening, by the way).
We left off with starting the process of getting an appointment with the genetic counselor at the Margaret Niedland Breast Center. I had my appointment all set up when I got a call saying that I needed an authorization from my primary care physician (going forward, we will just call her PCP for ease of typing). The funny thing about PCP’s is, some are very helpful and want to do everything to help you. But then, some are completely useless and look at you like you’ve got three heads whenever you suggest doing a test that isn’t part of their everyday repertoire. Mine was the latter. She actually asked me “Why do you want to do this?” after telling her about my family history. After brow beating her with my newly found information, she finally agreed to the test but then had no Earthly idea where to find a test because she had never ordered one before. Apparently, my original option was not in network. So folks, here is your second tip: Get a competent PCP before you start this process too. Long story short, the lab I used just happened to have a sales rep in the office and she ordered a test through them, leading me to believe it was in network through Humana. In the end, Humana refused to pay the claim stating that the lab was not in network and I didn’t have an authorization on file, which is wrong on both counts. This isn’t even the worst of it.
With my positive BRCA result in hand, I started making appointments with specialists. Every person I talked to recommended the same guy: Dr. John Rimmer. He was not in network, but he was the best so we decided to pay out of pocket and let Humana cover the hospital and anesthesia bill. Wrong. Insurance reps are maddening because from day to day, you get different excuses as to why they will not cover your procedure. It started with the fact that Dr. Rimmer was out of network so they wouldn’t pay for anything. Then, it was the fact that our specific policy didn’t cover prophylactic surgeries. In short, we will wait for you to get cancer before we will help you. This fight isn’t over and it will probably continue through out the year, considering I will then have a hysterectomy to get processed in November. I am trying to remain hopeful that Humana will come through for me, but it gets harder and harder to stay positive every day
This post rambles on, and I am sorry for that because I am usually concise with my thoughts. But I want you to be aware and ready for the war you might have to wage on your insurance company to get the care you deserve should you decide to go the surgical route with your new BRCA diagnosis.
Before we can go into the steps I’ve taken thus far, we have to go all the way back to the beginning, like before I was born. People that know me and know my background always ask the same question: How did you even know to test yourself? Well, it was one line on one piece of paper in a stack full of them that potentially saved my life and this is how I found it.
My mother was 21 years old when she had me and before I was even born she knew she was not going to stay with my father. Instead of keeping me in a home that was broken from the beginning, they both made the incredibly selfless choice to put me up for adoption in the hopes that I would go to a loving and stable home. Their wish was realized, because I did! My mom and dad were hand picked off a waiting list and one Friday in the dead of winter in upstate New York, they got the call. I always appreciated my mother for her choice, but it wasn’t until I had my own children that I realized how gut wrenching that sacrifice was for her. I have known I was adopted since before I can remember and it is a credit to my parents because I truly think that is how you have to do it when you adopt a child. It was never a bad thing or a taboo thing, just a part of me. As I got older, my parents made me aware that there was some breast cancer in my biological family. I think when you are young, you have that feeling of invincibility and the idea of breast cancer was very abstract and inconsequential. Just a blurb you have to write down on new patient paperwork. “History of cancer in your family?” Yes, check, breast cancer. But there’s no way it could ever touch me, right?
Fast forward several years. My husband and I were in the Bahamas and talking about Bucket Lists. I realized that meeting my biological mother was at the top of my list, if for no other reason than to say thanks and let her know she made the right choice. So when we got home, my husband spurred me into action and we started the search. My parents have always been very supportive of me learning where I came from so my mom handed over a file of paperwork from the adoption. I got to the section with basic background information on both parents. My mother was 5’9″, blonde hair, green eyes, just like me. Pretty cool! I turned the page and then I saw it:
“Her mother, grandmother, sister, two aunts, and a great aunt were treated for breast cancer.”
The search came to a grinding halt because this was a big deal and I knew that six people, all on the same side, in different generations could not be a coincidence or just “environmental” cancer. The very next day I Googled “breast cancer gene test” and learned that the gene actually had a name and that more and more people were offering the test since Angelina Jolie so publicly came out about her testing and preventative surgeries. So, I found the phone number for the Margaret Niedland Breast Center in Jupiter, FL and started the process of getting an appointment. That is a whole other story which will take an entirely new post to tell.
If you read the title of this post in Patrick Stewart’s voice from X-Men, then we are going to get along just fine. Hi there! My name is Sam and earlier this year I tested positive for the BRCA1 mutation. “What is that?” you might ask… Well, quite simply, everyone is born with the BRCA gene, yup, even you men. It is a part of our genetic makeup and it regulates and fights off tumor (or cancer) cells. When you have a mutation, the gene tells your body NOT to fight those cells, which puts you at a higher risk for breast and ovarian cancers. Environmental factors, of course, can play a role in contracting the disease, but for us mutants, it is a whole heck of a lot harder to fight off. It is a lot more complicated than that, but just for the sake of time and the fact that most of us aren’t medical professionals and don’t understand the nitty gritty of it, that’s the Cliff’s Notes version.
The purpose of this blog isn’t a scientific one, anyway. All of my life, I have always processed things by writing them down. Since this is going to turn out to be a pretty life-changing year, I decided to chronicle it in the hopes that it helps even just one person who is diagnosed after me. I hope to share encouragement, tips and even a little humor along the way because if you lose the willingness to smile amongst this trial, then this horrible disease and circumstance has won.
The stats: I am a 34 year old mother of two BEAUTIFUL little girls who are the lights of my life and I am married to, quite possibly, the best man God ever created. If we’re being honest, I am putting myself through hell this year just so I can stick around and be with him when I am an old lady. Sorry ladies, he won’t be in the dating pool anytime soon. I live in South Florida and have always been athletic, playing volleyball for years and going to CrossFit 6 days a week. I like to think being active and getting tons of Vitamin D from all the sunshine has kept me cancer free thus far, but I digress.
There is so much more to say, but I will finish the basic introductions and end here because, if you’re still here, I know you have things to do. Thanks for reading, and I hope you stick around!