New to the Neighborhood

Dear Orphan Anne,

I am so sorry that you are going through this.  It is a very rough time for you, I can see.  I think you already have your answer about what to do.  I have had breast problems all of my life and at 16 had a major operation to remove a b9 cyst.  That started 25 years of breast pain and constant testing.  In April of 2007, I was dx with IDC in more then one area in my left breast.  As my surgeon said, usually I like to give my patients a choice but I can't with you.  He told me I needed to have a total mastectomy of my left breast.  I was very upset but also wanted to live!  In my gut, I knew I was doing what had to be done and had the operation.  It was more then expected and I am so thankful for my surgeons' opinion and for making that decsion.  I think the last year has been difficult, mastectomy, chemo and major tests to rule out mets but now I feel that my situation is finally stable after a year. 

So, deep in your gut and heart you know what should be done to save your health.  No one wants to choose to do these preventive measures.  I wish you peace in your decisions. 

Please stay on these boards, there are many women here who have similar stories and can help you along the way.

Hugs to you!!!

So sory to hear of the stress you are suffering.  I have a friend who 7 years ago, at the age of 30 had an aggressive breast cancer.  She could not live with the fear of recurrence:  Becasue she has a similar family history to you and did the gene test last year, however, even thoug the results were inconclusive, she still decided to have bilateral mascectomies with reconstructions. 

She tells me that now, post surgery she feels so much more confident now and can move forward!

I do hope this helps.  It's a huge decision and I wish you all the best in making the right choice for you.

Hi: I had similar family history.  it took my sister (second dx with breast cancer) to get the genetic testing done.  She was positive. You can order the test kit from Myriad (on-line site) if your doctor does not have the test kit.  all major hospitals have a genetic counselor (covered by insurance usually) who can help you with the odds determination, discuss your risk aversion, and do the test for Myriad.  It takes about two weeks to find out the results.  My one sister (stage 3) was BRCA2 positive.  My other sister (stage 1) was BRCA negative.  Go figure.  Anyway, I tested positive.  I had just nursed my sister (stage 3) through her surgery.  she was heading into chemo and rads.  I chose to have the prophaletic masectomies right away.  Very happy with my choice because:  I didn't want to wait for IT (advised my risk factor was at the high end of the scale - 85% - because brca positive; lcis; abnormal cells on ductal lavage; and high saturation of bc in my family); I didn't have time for the semi-yearly testing and drama to "keep an eye on it"; and I never wanted to go through chemo or rads.  I was back at work under two weeks after the masectomies.  

A genetic counselor will help you with your decision.  Each of us makes our own choice: What was right for me may not be right for you.  We each have different backgrounds, support, and fears. It felt better once I talked to a genetic counselor to find out all my options and what they meant in managing risk.  Prayers are with you. 

orphan anne,

When you see the genetic counselor, you will need all the ages of relatives at the time of diagnosis and/or death. (sorry to be blunt). I wasn't prepared for this and had to do all of my thinking right there. Then a simple blood test and just the wait for the results.



My best to you and keep us posted!

Kimber