New to the Neighborhood

orphan_anne

New to the Neighborhood

orphan_anne

Hi,

This is my situation and I could use any advice that anyone would care to give.

16 years ago I watched my mother die of breast cancer.  She was diagnosed in November - on her birthday and died on my birthday in July.  I also have an aunt, grandmother, and cousin who have all met with the same fate.  (I figure that at least Mom finally got her fourth for bridge). 

I have fibrocystic breast disease which has been both painful and frightening for the past 15 years.  So painful in fact that I haven't removed my bra (except to shower) for that entire expanse of time.  There are generally 10 to 20 cysts in my breasts at any given time just to keep things interesting. I've had numerous FNAs.  I had one again yesterday, but they couldn't get anything out of the cyst and my doctor told me point blank it's time that I seriously consider a prophylactic bilateral mastectomy. 

I have so many questions, but don't know where to go.  For example, when they do gene testing, do they only need to test you?  And where do you go to get something like that done?

I have been weighing all my options, and think that going through with the procedure would alleviate most of the fear and this sense of impending doom that seems to follow me around.  Can anyone who's done this, let me know how it worked out for you?

Thanks so much for listening.  I can research like mad on the internet, but somehow talking to someone who's already been there seems like a more intelligent and personal way to assess everything logically.  Bless you all. 

Desny

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!!!

orphan_anne

Hi, Desny,

Thank God for women like you and your kind words. I realize that I'm not in the same league as the rest of you on this site, as I've not been officially diagnosed.  I still have a choice.  There is nothing even remotely brave about anything I'm considering - it is in fact the 'no brainer' easy way out.  But I'm still terrified.  The really courageous souls are all the women and men whose stories fill this website.  The ones who never got to make a choice and were forced into this situation.  The sheer compassion and strength that flows from everyone here is just astounding.  Thank you once again for sharing such a personal part of your life.  I really appreciate it.  I wish you every happiness now and in the future.

Nichola

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.

veggievet

Hi Anne,

There is an organization specifically for women at high risk for hereditary cancer.  The organization is Facing Our Risk of Cancer Empowered (FORCE) at http://www.facingourrisk.org .  There are resources specific to your questions.

My recommendation (in addition to visiting FORCE) is to consult with a board-certified genetic counselor.  They are the experts in cancer risk and will discuss your family history with you and then help you decide whether or not to have genetic testing.

If you e-mail me at: sueanddan@att.net  I'd be happy to help you find a genetic counselor in your area.

Warmest regards,

Sue

angelaw

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

Hello, Ladies,

Thanks to everyone who has responded to this post!  Honestly, your advice and support has been awesome.  I've finally been able to find two genetics counselors here in the Phoenix area (but there must be more).  I'll call on Monday and see where that leads me. 

I'm also a DES daughter if anyone knows what that is.  Diethylstilbestrol was a synthetic estrogen first synthesized in 1938. In 1971 it was found to be a teratogen when given to pregnant women.  My mother took it before conception and through her pregnancy with me on the advice of her doctor in 1951.  A new study shows DES daughters as having a 2.5 fold increase in breast cancer after age 40.  All of this, the family history, and the fibrocystic breast disease tends to make a me a little paranoid, you know?  Anyway, enough about me.  I really appreciate all of your help and advice.  If anyone else has anything to add, please don't hesitate. Thanks again to all of you.  Be strong, and be safe.  I'll let you know what happens.

Anne

Kimber

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