5 1/2 Weeks

5 ½ weeks till surgery?  Nope.

5 ½ weeks recovery time from surgery?  Nope.

5 ½ is what it took to get insurance approval for a prophylactic double mastectomy with immediate reconstruction.  I read a lot of blogs, I ask a lot of questions, but never in my reading did I learn how long it could take to get insurance approval.  No one seemed to talk about the window of time between finding a doctor and getting a surgery date.  Don’t get me wrong, I'm so thankful for the opportunity to even have insurance to proceed with this surgery in the first place, but I just wasn't prepared for how my psyche would be affected by the wait time.  Waiting for the email stating, "you're approved" drove me insane.  

Naïvely, I thought my virtual consult with my doctor in February would mean I had a date on the calendar for June, in pen, and insurance would naturally say “Yes!” immediately.  My emotions were flying all over the place while I waited.  Remember, I started this current journey in November, when I had an abnormal mammogram for the first time.  Since November, I have been in overdrive, wanting everything to be planned and set in stone as quickly as possible.  I like plans.  That’s my personality.  You want something done?  I do it right away.  You want something planned; I’ll get it planned quickly and efficiently.  But everything was moving so much slower than I ever anticipated, I wasn't the one in control and my mind didn’t know how to cope with not being in control.

Once again, however, I give thanks to my choice in PRMA.  Every time I wrote in to ask if insurance had yet approved, they replied in the best way they could, “you’ll be the first to know.”  I believed them, but I was also anxious.  I wrote a lot.  I knew in my mind that they really would tell me straight away as soon as they had news, but I needed to ask just feel somewhat proactive.  I can’t imagine what it’s like to be the sounding board for so many women all counting on you to provide the answers they can’t receive on their own.  Women, like me, who are so consumed with the idea of saving their lives that nothing else seems to matter.  

I noticed I wasn't as focused and on top of things as normal.  My work was becoming affected as my emotions were on a roller coaster.  I was on the verge of tears for weeks, as I had all the “what ifs” rolling through my mind.  “What if they say no…what will I do?”  That’s a really hard one to deal with.  I had taken the gigantic leap to get genetically tested, I found out I’m positive, I'd done my due diligence to finally find the perfect doctor, I'd requested weeks off work and now, after all that, what if I can’t do anything about it.  What if insurance says no.

I also had a lot to plan and set in place when it came to my family.  We live overseas and are flying to the States for all of this to happen.  My husband and I both work full time.  We have three children and a dog.  Jobs, flights, dog care, childcare, hotels, etc all neded to be planned and I couldn't do any of it until I had dates.  I felt like I was keeping everyone hanging as I had no answers.

Luckily, after 5 ½ weeks of agonizing waiting, I finally received the news that I was approved for the surgery that I set out to get, really, back in 2005.  I can’t begin to express the feeling that came over my body at the moment I received the news and my husband high-fived me.  He was on the phone with insurance confirming everything and gave me that smile that let me know everything was going to be ok.  I knew I was on my way to healing.

I think I would have been a little better off had I known that insurance approval could take this long.  Had I known from the beginning of my surgical search, I wouldn't have set false expectations in my timeline.  This is why I felt this journal entry was important, hoping someone else going through this could be informed about the insurance wait.

Questions I often get from others wanting to go down my path involve insurance and the steps I took.  Based on my experience and what I’ve been through, this is what I am able to come up with to hopefully shed a little light on insurance and BRCA.

Genetic Testing:

I'd heard that the cost of getting a BRCA genetic test could range in the thousands of dollars, dollars I didn’t have. I was, however, delighted to learn that my test could be cheaper if I could find a first-degree relative who tested positive.  Since my mother was no longer alive, my grandmother, a breast cancer survivor, was able to get her insurance to cover the genetic test, and her positive result meant that my test came out somewhere between $300-$500.  I believe that if this isn’t an option, out of pocket costs really are quite high, into the thousands.

Mammograms/MRI/Ultrasounds:

Somewhere during the time of my genetic test, having babies and putting off mammograms for a while, a law was passed that meant I couldn’t be denied insurance and be labeled a pre-existing condition.  I still don’t fully understand how this works, but I do know that I’ve had several different insurance policies since 2005 and we’ve never had a problem being covered for anything, in States and overseas.  When it was time for me to begin getting the routine mammograms, everything was covered because I was BRCA+ (high risk.)  Even now, all of my doctors write the orders for the scans as “BRCA+ high family risk.”

          Here’s what I found to best explain it all-

“Under the Affordable Care Act, most health plans must make genetic counseling and testing available without any out-of-pocket cost to women whose family history indicates they have a higher-than-average risk of mutations in the BRCA1 or BRCA2 genes. The federal health law's prevention coverage requirements are based on recommendations by the U.S. Preventive Services Task Force. It's the only preventive genetic test the organization endorses.” - http://www.npr.org/blogs/health/2013/12/09/249782554/dont-count-on-insurance-to-pay-for-genetic-tests

By Careilly5801 (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Other Appointments:

There's a lot of appointments involved in all of this.  Be well informed ahead of time so that you can prepare of how this might financially impact you.  It wasn’t just the genetics counselor appointment in the very beginning that I had, it was then the referral to the oncologist to talk about surgical options. It was then the appointments with the gynecologist to do ultrasounds on my ovaries (much like my yearly mammograms for my breasts).  There's the blood panels taken to check my indicators for ovarian cancer, the numerous MRIs and mammograms and then the plastic surgery consultations.  Again, my insurance has been there for me each and every time, covering the costs…perhaps only a copay with some of the plans I was on at the time.

I'm hoping that every woman gets the chance to have the BRCA genetic test IF she wants it.  As I mentioned in my first post, getting the test was going to quite possibly change my life forever and I had to live with the results.  I had to prepare myself for what my options would be and what I'd be capable of doing.  I have many people tell me, since coming public, that they aren't ready for the test and don't know if they ever will be.  That's ok.  I'm still here for them.  It's all so very personal and now one can make the choice for another.