Newbie here with some questions...

seaandy

I am a military spouse who's been through the ringer when it comes to my breasts. I am 36 years old and started having mammograms when I was 30. As a side note, I had a partial hysterectomy in 2002 due to a prolapsed uterus and extremely heavy bleeding and I also have Hashimoto's disease (thyroid disease). I have a family history of my mother having breast cancer at the age of 42 and my maternal grandmother around age 50. I do not know the type of breast cancer my mother had/has as I haven't had contact with her for almost 10 years. My grandmother had the type of breast cancer that ate estrogen like crazy. 

Since I started having mammograms I've always been complaining that my right breast has been very painful, feels very hot to the touch and can itch like crazy. Every single mammogram has it reporting that I have right side pain. In the past few years my left breast has started to become more and more painful to where it feels like I am lugging around two rocks most of the month. I cry when I have to take my bra off at night yet so I sleep with a tightish tank top for some support. My mammos have always said I have heterogeneously dense tissue and I was told I have fibrocystic breast disease.
Every year after I have my mammogram I am always "called back in" to have a more focused mammo in a certain area. Most of the time this shows up as nothing but the past two years they have found lumps and lesions. Two years ago they sat on it... and then come 2013 they decided to do an ultrasound right after my mammogram. It showed 2 lumps and a lesion. Two on my right breast and one on my left. Core biopsies were scheduled and completed a few weeks later. (All my results are below)
I was referred to see the genetic counselor on base (yay we had one finally) and he agreed that should have the BRCA test completed however since I didn't have a specific variant that we were looking for (aka my mom or grandmothers) we were not positive that any test result would be good or bad news. BRCA test came back negative. Doctor talked to me about what this meant, pretty much since we don't have something that we can look for (a positive test in my family) that even though I have a "negative" I do still have about a 28% chance of getting BC because of the young age of my mother and my grandmother having BC. He discussed maybe doing Tamoxifen treatments once I go into menopause (but he also discussed the drawbacks of this) however I take about 15 pills a day already because of my thyroid that I don't want to take yet more medicine. He also said that he could refer me to general surgery at the base to discuss my case. My argument is: I've been doing mammograms since I was 30. Most of the time I have to come back in for more testing which stresses me out just to find that they didn't find anything significant. My breasts hurt the majority of the month. I cannot enjoy life, I cannot hug my kids, I cannot hug my husband, there is so much I cannot do because my chest hurts so dang much. My doctor wants me to do alternating MRI/Mammo every six months until "they find something wrong"... so yay I get to go in every 6 months only to probably be recalled right back and maybe go thru the ultrasound and biopsies again. No thank you.

So my question is, having Tricare Prime insurance... has anyone without breast cancer but with a strong family history had a prophylactic mastectomy done? I am seriously considering it and I see the surgeon for a consult in two days.

Here are my results from the years.
2008: Bi Rads 2, Benign. Heterogeneously dense tissue
2009: Negative 1, Heterogeneously dense
2010: Negative 1, Heterogeneously dense
2011: 1st mammo Bi Rads 0, Incomplete, Heterogeneously dense tissue-- focal asymmetry on left CC view and agaon on left MLO view. 2nd mammo Bi Rads 1, Negative. Effaced focal asymmetry of the left breast.
2012: 1st mammo Bi Rads 0, Incomplete, Heterogeneously dense tissue-- asymmetry on outer left breast which was present on 2009 exam but incompletely visualized and not seen on 2011 or 2010. 2nd mammo Bi Rads I- negative. Region previously found appears less conspicuous.
2013: 1st mammo Bi Rads 0, Incomplete, Heterogeneously dense tissue. They wanted exaggerated CC and lateral views of both breasts. After new views, they incidentally noted an asymmetry in the inner left breast and wanted more views.
2013: Bilateral ultrasound Bi Rads 4 a, suspicious abnormality. Seen: Left breast, 3 small asymmetries. Right breast, 1 macrolobulated hypoechoic lesion in an area that was painful to me/ 1 macrolobulated lesion without internal vascularity/ and 1 macrolobulated heterogeneously hypoechoic lesion. Core biopsy ordered for each lesion.
2013: Core biopsies were done on three lesions. Results: All masses, benign breast tissue with stromal fibrosis, focal apocrine metaplasia, duct ectasia, and chronic inflammation.
Was referred to see a genetic counselor.


Thanks everyone.
Lindsay

Moderators

Hi Lindsay, 

Welcome to BCO. 

Sorry for what you are going through! There are a number of threads where this issue is being discussed. We suggest that you use the Search function on the left navigation and type in "prophylactic" to best find those conversations. 

Thinking of you, 

The Mods

sarahjane7374

I have a sister who was dx at age 28.  My mother is adopted and I have no other female blood relatives from which to draw a family history.  I had painful fibrocystic breasts which developed rapidly growing masses, bilaterally.  I had several biopsies, aspirations, and a lumpectomy to remove 4 masses - varying pathology, but always benign.  Mammograms were practically useless on my extremely dense breasts and getting them was excruciating.  My sister tested BRCA negative and p53 negative.  I met with a genetic counselor.  We discussed risk, we discussed Tamoxifen.  And then I had an MRI that detected a 9 cm mass that either appeared overnight or had been there all along and missed by everything.  That's when my doctor brought up the PBMX and I decided to do it.  I can totally sympathize with you. And I don't regret my decision one bit.