HELP BRCA1 Positive
 

Help....
I just found out that I tested positive for the BRCA1 gene and last week had both ovaries and tubes removed to avoid ovarian cancer.
In 2005 I was diagnosed with Stage 1 breast cancer - had 2 masses (l.5cm and .4cm). Had lumpectomy er-, pr- and her2+++, sentinal nodes negative. Had 4 cycles of A/C then Taxol and Herceptin. Had to stop Herceptin after 10 months due to failing MUGA scores. Also had 26 cycles of radiation.
My onc wants me to have bilateral mastecomies and I'm terrified. I thought I was through will all of this breast cancer stuff. He tells me I have a 60% chance of another (new) breast cancer! If I decide to do this I won't be able to have implants because of the radiation I had. Onc mention "Flaps" where they take belly fat and create a new breast. Very fearful of all of the cutting and what I will look like after be cutting to pieces. Husband will probably leave. I have a 23 year old daughter (who can't be tested until she is 25) and am terrified of telling her I have tested positive. She saw her grandmother (my mother) struggle and die from BC (mets to bone) at age 65. My maternal grandmother (94 no mets) and maternal grandfather (75) died of BC.
To make matters even worse my beloved 27 year old son who was healthy and an athlete died suddenly at home. I am struggling to deal with losing my first born, only son, and best friend. Now I have to deal with breast cancer issues again. Any thoughts or opinions will be greatly appreciated.
Thank you.

Hi

I am so sorry you have to go through this. We are all here for you. I do want to recommend another board. The group is called FORCE (facing our risk of cancer empowered) and their site address is www.facingourrisk.org

This site is an amazing group of women who are BRCA 1 or BRCA 2 positive. Many other women are on the site that are not positive but got "indeterminant" results on their tests or (like me) have alot of cancer in their family but tested negative for BRCA 1 or 2 (perhaps these families are positive for a gene not yet discovered).

This group is a great resource for propholactic masectomy with or without immediate reconstruction, delayed reconstruction and bilaterial spaphingo oophorectomy.

They also give great support during this initial discovery time as well as advice on how and when to get your daughter tested.

You can make it through this rough road. At least you know exactly what caused your cancer and that you can prevent it from happening again.

Big hug to you

It seems a bit odd to be responding to your message when I don't have the BRCA gene positive, but do have another dreadful disease (PSP-progressive supranuclear palsy) throughout my family. My grandmother, aunt and mother had it. And my aunt also had breast cancer. Until I got to this site and have learned from these great people how to think and live again, I had just about resigned myself to a speedy death from one or both. I'm raising my 9 year old granddaughter and was so worried about her. But not so much now. I come to this site and others to learn and be inspired and have decided that they will keep finding new meds and new ideas to help us. I don't know when or if it will help me, but I keep believing. And I eat better and exercise and look for the good in each day. And as I watch some of the wonderful warriors who truly live life each and every day so fully, I am learning to do the same.
I had a mastectomy and have not had reconstruction. I am older (63) and hard headed, but decided that as of now, I don't want to go through the reconstruction. My guy will just have to love my brain (what's left of it) and my "pushy ol' lady" charm!
You'll work it all out one day and one step at a time. Your plate is full today. Take some time to digest it all and figure out the plan that is right for you. And give yourself a break. You're facing a lot, but you can do it.
All the best to you as you make your choices, ma

Hello,
I was diagnosed with BRCA2 July, 2006. Oct of that yr I was diagnosed with my IDCIS (see profile below)
Also had my ovaries and tubes removed.

I ended up with a bilat mastectomy, and also had the DIEP flap reconstruction. Oh. by the way, I had the reconstruction done and yet I have a history of radiation on both side. So as you can see, at least in my case, it is possible.
Sure, my mother had the gene, she had the bc and surgeries, but to tell you the truth the history of her disease is much different then mine. How early they have been able to diagnose mine and the type of surgeries I had are altogether different then what my mom went through.
After my bilat mastectomy and reconstruction, my breasts look better then they did before bc. The reason I say this is because you have every chance of being extremely happy with your results.
I think we might be about the same ages because our kids are around the same ages.
If I can be of any help, please email me or PM me. I will be more then happy to talk with you. We can also talk of the phone if you would like.
I am 2 yrs out of my diagnosis of my bc, my genetic testing, chemo, etc....and life is very good and I am back to a very normal, active life.
Take care. You may be very surprised on how well all may work out.....

Dear Guest,
I see that Backy,Harrie and Maryanne have taken you into their very capable hands...wonderful!
The FORCE site is where I learned all about BRCA 7+ years ago before my testing. It is an incredible resource and all will welcome you there (I am Soccermom there as well).
There are many things for you to digest and decide on and things can be so overwhelming. Please take the time to read and post questions and the folks there will help you navigate these new waters,
I am so sorry you've had to cope with the loss of your child,please accept my sincerest condolences..I cant imagine...

gentle hugs,
Marcia

Thank You All
 

Thank you all for your helpful comments and support it is so appreciated.
I did register at FORCE as was suggested. I look forward to being part of this membership but not the reason why.
I have to figure out how to register so I can log in.
Thanks again.
Donna

You've reached out and we're here for you
 

Hi Donna,

I know it took a lot of courage to post what you did and I send my deepest condolences to you and your family. The women who have responded here give exceptional advice and I'm glad you took the next step (for example, registering at the site Becky recommended), which is simply what you need to do, day-by-day.

Reach out any time and know you'll get helpful information and warm words of encouragment.

See you online and we're glad you're here,

Vicki

Donna,
I echo Vics sentiment...you are a VERY brave warrior and dare I say in very good company here and on the FORCE site.
I wanted to let you know that there is a special area on the FORCE Boards for the younger folks. It gives them an opportunity to chat without their Moms/Aunties etc butting in! Some have tested others are waiting to test etc and they mull these issues over together ...
Kimberly Lewis who is a fellow Her2er is also BRCA+, as is her daughter..I hope to she will see this posting and chime in also.
Sorry you have a need to be here ,but so glad you found us!
Marcia

Nice picture Marcia!!!

TY ...you'e serious ..right?! love you too Harrie!