its been a while

lilrebel

hello,

it has been a while since i was on here, i was being tested for multiple suspicious lumps (i have known for many many years i have dense breasts). 

the mamo and u/s found 2 cysts underneath my R nipple, and a 2cm mass (which they are guessing is fibroedema).

they want to do another mamo in july, around the beginning of the month. 

i have found 1 of the cysts under my nipple, it is defiantly oddly shaped, so i have been monitoring my R breast (in the areas they pointed out) by doing self exam only once a week. i find more nodes which are hard or swollen quite large, my R armpit area leading to my R breast is sore because of the swelling.

this watch a wait thing isnt working for me, i am looking at not having health insurance in the near future (like a month or two).

should i just get my genes tested? i know ovarian and breast cancer run on my moms side (my mother and her sisters). but i dont know how much that will cost, or if it would give me any answers.

just kinda writing down my thoughts, i know its the same old tune everyone sings when they are in limbo.

lilrebel

DiveCat

I would ask for a referral for genetic counseling, and go from there. They will look at your family history and determine if testing for BRCA or other potential hereditary genes is appropriate. 

Counseling is an important step as they can also go through with you the issue of "answers". Now, I assume your mother and sisters never tested for BRCA or other genetic mutations. It is always best to test an affected member of the family first if possible as it can lead to certainty with your result. If they test, and were positive for a mutation then you can test JUST for that mutation (which would be under $500 and pretty quick turnaround). If you are negative for it, you are a true negative. If they test, and are negative, there is little reason in you testing unless there are other potential hereditary issues in your family that need to be discussed with a counselor.

Now, if your affected members are not tested, and you get a positive mutation result then it can be assumed it is likely that mutation may be related to the cancers in your family (though not necessarily). Other family members can then test for that mutation too and you can kind of trace it. In any event, a mutation would give you an idea of your risk based on quite substantial research at this point (at least for BRCA).

Complications arise if your affected family members are not tested and you get a negative result...as now there is no "context" for your result. You are considered an uninformed negative. There may be a mutation in your family that affected your affected family members, which you did not inherit so you are technically a true negative but you don't know this for sure. Or, they may not have a mutation either, and so your negative result does not clear anything up...there may be other reasons for the hereditary pattern in your family (an undiscovered mutation, a combination of genetic variations, and so on). So, the question becomes what do you do with that negative result when it is not a true negative result (it may be, but you don't know for sure). And that can come down to your own comfort with uncertainty and the risk assessment your genetic counselor can provide you.

With health insurance, if you quality, you would be covered (at least in great part). Without it, it can cost quite a bit if you are running a full panel (for BRCA1/2 and BART/reflex testing). There are different labs, but I paid around $3,000 through Ambry Genetics (testing is covered in Canada, but I traveled to the U.S.). Myriad is around $4,000. U of Washington is closer to $2,000 (I believe) but they do take a few months to get you results. Single-site testing or the three-site panel (the Ashkenazi panel) are both around $400-500.

lilrebel

thank you divecat, i will ask my doctor about being referred to a genetic counselor.

no one in my family has ever been tested, i didnt find out about my moms condition until i was 27 years old, and my dad (whom she got a divorce from when i was 3) told me because he figured she never would but i had the right to know. she still hasnt told me about it...complicated family drama, not worth talking to her about it she will just start crying and so on....too stressful.

i am in the mind right now where if i have the genetic markers then i will prepare my family and get better organized with insurance. 

if i dont have the marker, then i will still get regular testing, but not be as concered i guess...i dont know anymore, it makes me tired just thinking about all of this stuff.

lilrebel

geekyknitter

I would recommend paying a little extra to test through Myriad or Ambry if you can.  University of Washington can be a LONG wait indeed.  

Good luck whatever you decide!

lilrebel

thank you for the advice geekyknitter.

i am going to call my doctor today, we will see what can be done.

lilrebel