I Have a Recovery Goal, Do You?

I know that recovery is hard.  Only in the past three weeks have I really began to feel like myself again.  I talked to my wonderful aunt today and she was singing praises for my bravery.  With the holidays approaching, I’ve done a lot of reflecting on how far I’ve come.  I’m so, so grateful for the chance to be here and be healthy.  Not everyone is so lucky.

The last time I saw my mom alive was when I came home from college for Christmas break.  By that point in her life she had stopped chemo treatment and was simply waiting for the end.  She was on a lot of pain meds and wasn’t cognizant of her surroundings.  She had brief lucid moments, but not many.  I remember that she “woke up” for Christmas.  It was hard on all of us but a blessing to spend those hours with her.  She passed away not long after I returned to school to resume classes in January.

I’ve seen what cancer can do to the individual suffering and the family.  I may have the cancer gene, but I get a gift my mother never had—I took steps to prevent cancer before it could start.  Cancer is something that people don’t talk about and that needs to change.  No one should feel ashamed or self-conscious about taking steps to treat or prevent this awful disease.  Many people marvel at what I’ve done and how open I am at discussing my health. I don’t see it as a choice.  I am open because I can make a difference.  If I can help one person stay healthy by raising awareness of prophylactic surgery or letting her know she is not alone in this process, I will be elated.

In the meantime, I’m doing my best to stay healthy and enjoy this life I’ve been given.  I may not be as fit as I was last year, but I will be again.  This Christmas, I have been given the gift of health, and it’s not one I will ever take for grated.

Every bit counts...
Every bit counts…

Mastectomy: A Bump in the Road

My mastectomy surgery is 14 days from today, and I had a great day today.  Really, I did.  I’m making sure I exercise by walking each day.  Today I walked faster than I have in the past several weeks and I walked further.  I spent almost an hour out walking!

Mastectomy ready
Out for a walk

curtainsMy mastectomy home: “new” curtains

I had lunch with some friends today and spent the afternoon looking for an affordable solution to my curtain issue.  My bedroom has a set of curtains that, because of the way we had to hang the curtain rod, cannot close over the whole set of windows.  They were hung for decoration vs. function.  Well, now that I’ll be sleeping in a chair right next to those windows, I wanted to make sure I’d have an easier time napping.  Curtains are expensive, though, people!  So, I had to get creative.  I went to Home Goods and ended up buying a set of panels for my daughter’s room for $25 so I could steal her curtains for my room!  The price of those curtains at Home Goods was the price for a single curtain panel at Target.  Anyway, the curtain situation is much improved in my room now.  Granted, it’s not that great aesthetically, but it will work for the time being.

Pretty successful day, right?  well, it was…

…until I opened the mail.  Let’s just say that my insurance company and I have a bit of a conflict.  They denied coverage of my reconstructive surgery.  I don’t get how this happens.  They approved my hysterectomy and oophorectomy.  They have in their code that “Aetna considers prophylactic mastectomy medically necessary for reduction of risk of breast cancer in any of the following categories of high-risk women”…[including] “Women who possess BRCA1 or BRCA2 mutations confirmed by molecular susceptibility testing.”  Therefore, I should also fit the following criteria that, “Aetna considers reconstructive breast surgery medically necessary after a medically necessary mastectomy.”

envelope
image by Blake Burkhart on Flickr

What I find annoying about this is not the fact that I won’t be covered because, clearly I will.  The annoying part is that I will have to use valuable time tomorrow on the phone.  I need to follow up with my plastic surgeon to make sure they resubmit for the correct billing because Aetna rejected a code they should have covered.   In addition, I’ll be calling the insurance company first thing in the morning to see what exactly they have qualms about.  I have limited healthy time left, people.  My two weeks remaining until this mastectomy is like gold to me.  I don’t want to waste it on the phone working out something that shouldn’t be an issue!  I should be doing all the things I love to do and not feeling guilty about any of it.  Working out insurance coverage was not on my to do list.

Prophylatic mastectomy and insurance

What can you take away from this?  Call your insurance company when you start looking into docs and procedures.  I did this, but I didn’t do one crucial step–ask for the codes the doctors need to use when filing for these procedures to guarantee they will be covered under your plan.  You must be an informed consumer.  These insurance Consumer Policy Bulletins aren’t easy to find.  You need to know what to look for.  And, the codes you need are all the way hidden at the bottom under all of the medical research  (at least they are in Aetna’s case).  I still haven’t gotten the coverage for my genetic testing worked out but we haven’t been billed again, either.  Someone dropped the ball on that one when I asked for the genetics people to resubmit and gave them the codes they should use.  I never heard back.  It’s been months.  If you need to do a search to help with your insurance process, turn to Google.  Use the name of your insurance company + Consumer Policy Bulletin + either “breast reconstructive surgery” or “Prophylactic mastectomy.”  I’m sure you’ll have something turn up.

Well, this has turned into a very long post; if you’ve read this far I’m delighted.  I am not going to let this little blip get me down.  I’ll make sure my surgeries happen by being the proactive person that I am!  And, I’ll remember that I had quite a good day so there’s no reason someone else’s stupid mistake should sour my mood any longer.  It’s time I remember my mantra to “see life half full.”

 

Genetic Testing: I’m a Mutant?

I’ve been waiting quite some time to launch this blog.  Honestly, I should have started writing posts offline much sooner.  Because of my job, I had to keep my situation quiet until I knew exactly what path this journey would take and, as with anything involving the medical field, such paths often take time to construct.  My path began with a little thing called “genetic testing.”

I’m BRCA2+

What does this mean?  Well, according to Ambry Genetics, I have a risk estimate of 45-84% of developing breast cancer in my lifetime and an 11-18% chance of developing ovarian cancer.  I also have an increased risk of pancreatic cancer.

How did I find this out?  Genetic Testing

Well, I knew from childhood that cancer ran in my family.  My mother was diagnosed with breast cancer at the young age of 40.  She had a remission period of five years after her initial bout but ultimately even high dose chemotherapy and stem cell transplants weren’t enough and she passed away at the age of 52.  I was in college.

My mom’s sister also had breast cancer.  She was much more fortunate in that hers was caught early and responded to treatment.  It is thanks to my aunt that I knew I should be tested for the breast cancer gene.  My aunt found out she was BRCA2+ this spring and I immediately began looking into testing for myself.  Up until that point, I only suspected that I was a carrier.  I had met with a genetic counselor after my daughter was born and did a preliminary screening.  Screening and testing are not the same thing.  In fact, this screener, affiliated with the Karmanos Cancer Institute, said that my BRCA1 Proband Probability was .039 according to the University of Pennsylvania model and my BRCA2 Proband Probability according to the BRCAPRO model was only 0.010.  My Proband Probability of BRCA1 or 2 according to Myriad.com was 0.056 and 0.018 through BRCAPRO.  To make a long story short, according to this genetic counselor my overall risk was only 1.8-5.6% likelihood of carrying the gene.

What is interesting about these stats found by Karmanos is that they overlooked my grandfather’s prostate cancer and the fact (unknown to me at the time) that his sister also had breast cancer.  Put these two facts into play and there you have it:  hereditary breast cancer confirmed by an easy, but very expensive, blood test .

Genetic Testing Blood Draw
via Thirteen of Clubs on Flickr

Yes, this is simplifying what amounts to complicated genetics.  My point here is not that everyone should run out and get tested for genetically-based cancers.  What I am advising is that you look closely at your family history and make sure you have all of your information.  And, if you discover additional facts, realize that they affect what could be in your gene pool.

“Now, wait a minute,” you say.  “Let’s go back.  What does prostate cancer have to do with breast cancer?”

Ah, good question.  Read my next post for more info on being BRCA2+.