BRCA 2 Positive - What do I do now??

Lisa,

I am so sorry for your disgnosis but please don't panic just yet for if you do, you will not be able to think clearly and consider your choices. I am also faced with the recommendation of a prophylactic mastectomy. I have a very strong family history of bc and my surgeon feels it is not a matter of if but when I will have a mammogram or MRI indicating I do have bc.

I have thought about this for about 10 days now and have reached my decision. I am having the surgery done as soon as possible, I am a candidate for the skin and nipple sparing surgery so in the end, I should "look fairly normal" and will have lessened the chance I will actually develop bc sometime soon.

In a way, it is a refeif to know I will not be receiving those wretched letters every six months from the breast center with the results of my mammogram telling me there is a "benign appearing" area in my breast,  (I have been unable to locate any intelligent person who can tell me exactly what "benigh appearing" really means.) Actually, the surgeon probably told me the truth when she said, "It does not appear to be cancer right now, but it is possible that it is and it is certainly not normal."

Well, I am ready to get rid of whatever it is that is abnormal now! It took me a bit of time to come to this decision and I did it without really considering my husband's thoughts all that much. I value his opinion greatly but in the end, he is not the one who is very likely to develop bc. He supports my decision now that I have made it. If he did not, my decision would still be the same.

I am not recommending that you make the same decision I have made, I am recommending you take a deep breath, find some inner peace, and gather your thoughts. When you do this, you can then gather your information. Get a second opinion, Arm yourself with the facts. Ask questions. 

This was not caused by smoking! It is true that smoking is not good for you but it is not linked to bc. Even if it were, what you need now is support - not yelling and criticism!

Hugs and best wishes!

Take a deep breath the news that you are BRCA is hard to swallow even if you are expecting it, much more so when you are not. Visit the FORCE website, as recommended above and be sure to check out the community page.  FORCE has local support and educational groups in about 60 cities.  If there is one near you get in touch with them and you can meet other women in your situation who live near you. Another good resource is positiveresultsthebook.com.

While many BRCA-positive women do go the prophylactic surgery route not all do and no, you don't need to do anything immediately other than get into a good surveillance program for both your breasts and your ovaries.  You have time to adjust to the information, do your research and decide what is best for you.

I am sorry about your husband's reaction, that only adds to the stress.  But you are right, inheriting this gene is not your "fault."  In the meantime, you already know that smoking is not good for you.  You should also know that if in th future you decide to opt for prophyactic mastectomies and breast reconstruction some doctors will not perform certain types of reconstruction on smokers becasue the complication rates are so high.

Good luck. 

From a fellow BRCA2 carrier (I found out nearly 5 years ago) 

Lisa,

I hope by now you have taken some deep breaths and are starting to consider options.  Even though you are BRCA 2+ your biopsy was benign so you have time to figure out what YOU want.  The decisions that we are faced with are very, very personal and they can last a lifetime.  Please don't feel pressured to come up with immediate answers.

I understand what it is like to lose a sister to BC.  My sister, Sue, died 5 years ago on January 22nd.  Even though she was stage III at her dx it looked good because 5 years later she still didn't have evidence of disease (after surgery, chemo and rads).  But 3 months after she ended her tamoxifen she came up with bone mets.  About 9 month later she was gone.  I was there for 3 days taking care of her during her last week.  I understand.

Sue never got tested because it was before the law was passed prohibiting medical insurers from using genetics test results as a reason to deny insuring an individual.  But my mom and I went last year and both tested positive.  Mom had a malignant growth removed over 30 years ago when she was 50.  Then, at 80, she was dx'ed again with stage I IDC.  She had a lumpectomy and rads.  But she still has both breasts and is doing great. 

I got dx'ed at 50 with stage III ILC (same dx as my sister).  Having a mastectomy on my cancer side wasn't an option according to the 3 oncs I talked with.  I was already considering a BMX just because I didn't want to risk my other breast and have to go through chemo again.  When I got the BRCA results it made it a no-brainer.  At 51, I was going to let the girls go.  I haven't regretted it but I also have a very stable marriage and my husband is much more interested in having me rid of cancer than anything else.  So when you combine all the factors it made sense for ME to have a BMX: age, state of my personal life, cancer dx.

BRCA 2, IF it leads to cancer, tends to be ER+, PR+ and HER2- which is normally a less aggressive cancer.  But each cancer and each person is individual.  The odds are that it is less aggressive. 

You are not your sister.  That may sound obvious to someone else but I've had to tell myself those words many times.  I am not my sister.  Both of us were stage III at dx, both with lobular cancer (only 10-15% of BC is lobular), and probably both BRCA 2 postive.  She's gone.  I'm fighting and, although we shared genes, I think I will still be here 10 years from now.

Take care.

I too am BRCA 2 positive, as is my sister who is an 11 year survivor, and one passed away at age 54 of BC...amazing that we are all BRACA 2 positive. My first cousin has also had BC. There is not a family history until it hit our generation. I had a 20% chance of not getting BC but did not have the testing until I was diagnosed with BC...I was to big of a chicken. Now I wish I had, had the testing and had a mastectomy before BC....but hindsight is always 20/20. I was diagnosed last July, had a bi-lateral mastectomy in Aug, chemo started in Sept, reconstrucive surgery this past Jan, and am now 8/33 radiation treatments. I am also planning a hysterectomy for early summer.....hoping that will take care of it FOREVER ! Such tough decisions to make, pray I have made the right ones.

I can fully understand what you are going through... I tried several years ago to have the BRAC test due to strong strong family history of breast cancer including my father, two sisters, three aunts. Insurance declined to pay for this test, so due to the cost I put it off, sorry to say.  In October 2010 I was diagnosed with invasive ductal carcinoma and after diagnosis, my insurance agreed to pay for the BRAC test and I was positive as well for BRAC I & II mutation.  Also increased chance for ovarian cancer.  November 11th I had a skin-sparing double mastectomy and was so pleasantly surprised at what technology can do (along with phenominal surgeons).  I am in Central Florida, and if anyone who reads this needs information on a wonderful oncology surgeon/plastic surgeon group, please email me at DLCMassage1@aol.com.  During the mastectomy, they used skin-sparing techniques.  I have less of a scar than if I had had a breast-lift. Since my plastic surgeon assisted with the orignal surgery, she placed expanders in during the mastectomy (though they were flat).  After a month, she started filling them every two weeks.  April 20, 2011, the expanders were removed and my implants are in place.  They look better than my natural breasts (after 2 kids), and the cancer is gone.. caught very early and no chemo required. This could have been disastrous had the cancer not been caught.  I am not saying that this wasn't physically painful or emotionally difficult, but just concentrated on the good and what was the next step.  I did not make the time to feel sorry for myself and surrounded myself with good and positive people and for the first time in my life, put myself first, and so should you.  And, should you opt not to have surgery, please get mammograms on time.  It saved my life.  The mammogram did not detect the tumor as it was too small, but what it detected was hunderds of microcalcifications trying to "attack" something. In June the areola will be replaced and nipples, if I choose.  I am scheduled for the removal of my ovaries on May 19th (instead of tomoxifen) and am having a little anxioty with that because of the hormonal changes, but... all of this said... I would recommend to you.. research to find the right group of doctors in your area and have the double mastectomy.  It is a scary thing, but the thought of waiting each year to see if this is the year you will be diagnosed is scarier to me. In my opinion, I would rather have surgery when I am healthy.

Sorry.... meant BRCA not BRAC...