OTProphylactic Double Mastectomy/breast cancer consultation, insurance covers PS for...

Some of you may recall a thread I started a while back about insurance covering a prophylactic double mastectomy if you are a carrier of the BRCA1 or BRCA2 gene.  This process (for most insurances) is covered and includes reconstructive surgery such as breast implants or using fat from another area for reconstructive purposes.  One way to get plastic surgery covered AND significantly reduce your risk of cancer.  Anyway, here is some more info in case anyone out there is curious, knows someone at risk, or what have you.

- if you are a carrier you  have a 87% probability of developing breast cancer.  This is certainly true looking at my family history.

- 50% of us will develop breast cancer before the age of 50.  My sister was diagnosed at age 40.  Mom died at 54 from it.  Don't mess around and get screened!

- You have a 40% probability of developing ovarian cancer.  There is no good screen for this either and a nasty mortality rate to boot.  You would need the ovaries and fallopian tubes removed to reduce this risk along with the breast portion being dealt with.  Weirdly, nobody in my family history had ovarian cancer.  All the women in my family die from breast cancer though.  

- You are more likely to develop melanoma (skin cancer- that I do have), pancreatic cancer, colon cancer, and a few other lovely varieties.  The probability though is not nearly as nasty as the breast cancer, but still significantly more at risk.  Get screened.  Don't make excuses or put it off.  This is what directly caused my mother and grandmother to die- denial.  They knew something was up and waited too long to seek medical intervention.  Little sis had it caught for her during a heart surgery (man, did she get every crap genitici card my family has to offer!) and she is doing splendidly.

-Turns out my Dutch heritage has something to do with it.  Jewish heritage is also a huge one (specific type though... starts with an A and hard to spell... can't remember the word though.)  There are a few heritages that put you at higher risk.  

-How do you know if you are a carrier?  This is a blood test.  If you have never been through genetic testing, typically you go to a counseling appointment where the educate you on the gene history, take your family history, explain that you can not be discriminated at work, but life insurance/disability insurance may be denied if you test positive, etc.  Quick blood draw.  Results are given in another counseling appointment.  They also alert you to the emotional end of hearing news that you are or are not a carrier.  It is expensive.  I was told that it is $4,000 if the insurance does not cover it.  One you know which gene you have though, it is cheaper for your family members.  They do not have to do nearly as much testing- just for the specific gene found.  That is under $400 in that situation.  Insurance for me does cover testing though.  Check with yours.  

- There are three options you can do if you are a carrier.  

1.  Double mastectomy.  This reduces your risk of developing breast cancer by 95%.   Not 100% due to surgeons being unable to remove 100% of breast tissue.  But much much better odds.  Just found out that this is an OUT PATIENT procedure that is 23 hours.  Time off work is 3 weeks, with an overall 6 week recovery.  Reconstruction is done at the time of surgery.  For real, this totally seems doable!  So much better than what I was expecting.  Oh. since we lost SO MUCH weight.  The deflated boobs now mean that the nipple cannot be spared (at least for me).  Imagine the boobs being placed higher up (perky position)... if the nipples were spared they would be way too low.  Consequently, the nipples will be tattooed on.  Not thrilled about this, but the hubby shrugged it off.  I am so blessed to have his unconditional love!  Didn't ask questions about size of the final cup... that is a future referral for a plastic surgeon.  My breast doctor is not the one that does the surgery, but refers to a plastic surgeon that has extra training to deal with cancer/breast issues.  Oh, it is not recommenced for ages 60 and older.  They want you doing it young (early 40's is ideal).  Implants to not last forever though.  I think it is about a 10 year shelf life, but will have to confirm this when I go to a PS.  

2.  Double mastectomy too much for you to wrap your head around?  1 mammogram per year, and mid year an MRI.  The MRI catches the cancer earlier than the mammogram.  Personally though, I look at it as walking around with a time bomb just waiting to go off.  I have had enough experience with cancer (and it grows unusually fast on me- growth hormone that makes me tall makes me a freaking petri dish for cancer growth).  SO IMHO why wait to develop cancer, then do something about it?Spare yourself the chemo and radiation and surgery.  Do option 1 while you are healthy and able to withstand it well.  Skin cancer patient here works hard at avoiding radiation though because 10 years down the road research shows that messes with the skin cancer even further, and I am already very young to be dealing with so much skin cancer.  

3.  Take medicine to reduce the hormone that causes it.  Specially, Tomnaxifin was mentioned.  My sister does take this and it does not seem to give her any unpleasant side effects.  Still not as effective as the mastectomy.   I am also one to worry about what they will realize in 10 years about the medicine.  Will it be like hormone replacement therapy that they had women do, and later realized it caused breast cancer?  For me, just cut the damn things off.  Then I know all that tissue that is removed cannot cause me cancer anymore!

Anyway, if you are a carrier and wish you could afford plastic surgery to fix the girls- this is truly a great option.  Reduce your cancer risk significantly and look better!

these are 2 entirely different spectrums...   i get your point, however, i dont take testing for BRCA lightly, nor getting the results and acting accordingly.    I wish i could be as nonchalant about it as you, but the whole BRCA thing ... doesnt leave me thinking of ways to get free plastics out of it.   These two topics are on complete opposite sides of my brain.

My paternal cousin last year was diagnosed with breast cancer and BRCA (not sure 1 or 2) positive and told me I need to get tested too.  My GYN appointment is due in October, and now that it's coming closer and closer, it's a worry and panic mode about what i would do if positive, how far would I go, I just dont know.   it's terrifying, i cant think about IT and "the bright side of free plastics" at the same time.  I just get nauseated, period. 

Serious ****

Yep.  It is serious.  I get why it is tough to think about, to get tested for, and to make a decision about what to do about it if it turns out that you have the gene.  Personally, I chose to focus on the benefits of being proactive.  But, I have dealt with cancer personally for a few years so my resiliency is pretty developed at this point.  It wasn't like that when I was first diagnosed.  

I highly doubt that your OB would test on that appointment.  Usually it is a separate process and done via a genetic counselor.  Can't say for sure for you, but I have now gone through 2 different rounds of genetic testing (one for a heart condition) and they occurred at different hospitals- both the same process though.  

I hope that if you pursue genetic testing that it comes back negative for you.  It is not a guarantee that you are a carrier even though your cousin is.  

Sounds like you have your mind right and are making a very reasonable decision. Insurance paid boob job is a perk of course. Good for you for being proactive. If I found that I had the gene I would do the same. No reason to wait to get cancer when you can cut off at the pass.