ASCO Survival Benefit of Prophylatic Mastectomy

 

Jessiea 

 

Sometimes I just come across an interesting article while looking at something else.  I have different places I go to try and check for new news, I get goggle and yahoo alerts, lots of places.  There is alot of good information out there it is just having the time to look for it.

 

Jessie,

 

Oh I know, I tell ya, when I read something like this my anxiety level goes up thinking maybe I didn't have to have that dble mastectomy after all.  It upsets me mainly because I really didn't want to do it and have yet to adjust.  But I have a brca 1 mutation so felt I had no choice.  Atleast they mentioned "older women"!

 

How many times do we read something and lo and behold they've changed their minds, whoopsie we think it is better this way than that way and the women reading that for their own reasons are slowing seething or getting worried because they had done the first plan of action.  I don't know, they do mess with our heads as Galina says.

You and I can sit in the other section together. lol

 

 

 

I am BRCA+ and the doctors just looked at me and said, "Well, this means you need a bilateral mastectemy and hysterectemy."  As if I had no choice in the matter.  My husband, who is the type to just do whatever a doctor says without any independent thought of his own, left the meeting assuming that I would automatically do the mastectemy and hysterectemy.

 

All of this assumption and dictating made me uncomfortable and little mad.  So, I started researching on line and doing some reading on my own.  Articles like this one and others led me to the decision that, like you, I will do the double mastectemy.  But, I got to that place on my own.  I think its important we each go through our own decision process.  I feel very strongly that each patient must make her own treatment decisions.    

It makes me SO MAD to hear that it takes a year to get your BRCA test results!!! I was pissed at the 2 weeks I had to wait.  I guess socialized medicine does have its down falls.

 

Just so you know, there is a patent on the BRCA test and only one lab can do it, Myriad Labs.  They restrict the testing to Dr.'s who commit to using genetic counselers to screen the test subjects to make sure they truly have a genetic risk and to handle all genetic questions.   This makes getting the test difficult in and of itself.  Not to mention that there is only one lab in the ENTIRE world that can process the test.

 

As to your question regarding why remove a healthy uterous (or falopian tubes or cervix for that matter) the answer is this:

If you are BRCA 1 positive, you have a 40% chance of developing ovarian cancer.  Ovarian cancer can develop in the uterous, ovaries, falopian tubes, even the peritineal lining of the abdomen.  Very scary cancer.  Also, ovarian cancer is quiet.  It is hard to detect and has little to no symptoms until it is very advanced.  So, if you are going to be safe and reduce your likelyhood of contracting ovarian cancer, assuming you are BRCA1 +, removal of all the reproductive organs is recomended.

 

I know this is not what I wanted to hear.  But, after much reading and thinking I have concluded that I will do the hysterectemy too after I finish chemo for this nasty TN BC.  In addition to the bilateral mastectemy and reconstruction.

 

Again, this is a very personal decision that each woman must make on their own.

 

Here is a link for information on who is at risk for Uterine Cancer,

Here is another link to the National Breast Cancer Institute that I found helpful.

 

 

I know you will make the right choice for yourself.

Much love,