BRCA2 positive and now what???

Gabi ~

It is my understanding that with the BRCA test...you have a 50/50 % change of cancer in breast and ovarian cancer and highly recommended you remove both to lesson those "risks"  I am sure its a major disappointment just the same. Then hormone replacement and early menopause would in gen. would be so overwhelming to say the least.  Yet, to lesson those percentages to live a long full life is far worth it.

Yes, I had a mastectomy and yes, they did take the nipple.

Ovarian Cancer is so hard to detect and when one has symptoms its gen. already aggressive.

I am sorry Gabi you are enduring all of this...yet w/ the BRCA testing its amazing they can identify this gene mutation and hopefully some day have something to correct it...but for now its "preventative" measures we must take!

All my BEST with your decisions take your time do your research.

Much LUV

Hi Gabi,

I was diagnosed with breast cancer stage1 last December. I found out the results of my genetic testing few weeks after the lumpectomy, And to everyone's surprise I was positive for BRAC 2. Breast cancer has not expressed in many of my female relatives, I guess I was one of the unlucky ones.

After a visit with the genetic counselors, seeing the stats and explanations of my risks, I decided to go for double mastectomy and also to have my ovaries removed. I am 42 years old with 2 college kids, so the decision was "easier", I think. On the other hand, given the situation of being younger with no children it would have been more difficult and my heart goes to these women who are facing this. But even in situations like that one, you will be surprised to find out that they are not alone, that there are women with similar stories liketheirs, yours or ours. I  researched in different forums to get an idea of what other women in this situation have done. I found that everyone's decision was personal and yet difficult. But the majority felt that it was much better to get their life's back with no more worries. And that they did whatever it took to get it!!!!

It is difficult, but you will find the answer soon with no pressure. You will get there and when you do, you will choose the one you can live with.

When I made my decisions,  I went through each procedure with a positive attitude, always sure that I was doing the right thing.  I will have my implants in about 2 months and this whole thing will be another chapter of my life.

Everybody's situation is different and that is why you should ask questions and explore all your options.

Good luck and I hope this helps.

Facing our risk of cancer empowered FORCE is a online community full of people with BRCA 1 and 2.  It may be helpful for you to touch base with them at facingourrisk.org.  I am sure you will find many ladies there that faced the same issues and may find it helpful.  good luck

Facing our risk of cancer empowered FORCE is a online community full of people with BRCA 1 and 2.  It may be helpful for you to touch base with them at facingourrisk.org.  I am sure you will find many ladies there that faced the same issues and may find it helpful.  good luck

Yep - it's a tough bit of news to hear, being BRCA positive. On the bright side, you can stop the radiation!  I know, small comfort. Yes, a double mastectomy is what is highly recommended, to save your life. I've had 'em - last September. See if you can get skin-sparing mastectomies with immediate reconstruction. It eases the shock to wake up with something there. I have no idea what sort of choices you have in S.Korea or if you have options for travel, but you do have time to consider your options. You have already done the tough part - getting it out of you, and following with the chemo knock-out punch.

Now, let your skin heal from the radiation you did have (stopping now will help your reconstruction options, should you decide to reconstruct) and use this time to heal, recover, and discover what your options are while your get your mind wrapped around the whole idea. There are good options. It's never quite as good as the original equipment, but then, we cannot ask a surgeon's hands, however gifted, to replicate the Hand of God. But you'd be surprised how many women are pretty tickled to be firmer than they were, perkier, or a cup size larger. Small compensations, but they do help. Along with the relief of having vastly reduced chance of recurrence.

Good luck to you on these decisions and on the path ahead.

Lisa

BRCA-1 positive also BRCA-2 variant of 'uncertain significance'

Hi Gabi,

I am glad you are preparing yourself and writing your questions. It is your body, your decision and every question should be answered.

In reference to the mastectomy, I chose the reconstruction immediately. Expanders were placed under the muscle to stretch the skin in order to give room for my implants, which will be inserted in about 2 months. My nipples were saved

They are looking pretty good and the scars sit right underneath my breasts, so they will be hiding. I can't complain, my breast surgeon and plastic surgeon are doing a great job!

I am very happy!  

 Gabi

I can tell you that I was blessed to have found out this cancer as early as I did. It was found earily enough that I seem to be in the clear for now. My daughters are going through the treatments and they are doing well too. It really has to be in you mind and self talk that you will make it through and that your life will be better for it.

My whole family has the information and they are all getting watched or tested for this gene.

If you would like to talk with me I will be glad to answer any questions you have.

Honey

Question for you ladies who are BRCA2 positive?  Were any of you the sole persons in your family to have Breast cancer, or did you all have others' in your family lines with a history of BC?

I'm asking, b/c I was 49 and of course the cut off is 50 for higher risk.  Only one in my immediate family, with 2 sisters, and mother clear.  But my father's sister and her aunt have had BC at later ages (think 60-70) years old, so not early BC.  I'm trying to decide whether to consult a genetists or not?  Any thoughts?

Thanks.  I did talk to one on the phone and she said I have like an 8-10% chance of it?  Not sure that that means in the whole realm of things. She did say she's interested in persuing it on her side if I'm wanting to, b/c of the small family to go by.

 Just seems odd, I got it and no one else, so maybe it's just me and my make-up.  It appears to be on dad's side.  She also mentioned since there is only 1 paternal aunt and 1 great p-great-aunt, and only one of each on mom's side it might be why it hasn't shown up more?  There are a lot more men in the family than women in previous generations.  like 5 of 7 kids in a family and such. or 2 of 3 boys in another side most times.  I'm just really tossed as to whether to do it and then whether to tell anyone if I am, you know?  Frustrating...

Hi Gabi,

About your questions, my surgeon told me that they could save my nipples. Breast reconstruction surgeries has changed a lot in the last five years or so. The surgeon and plastic surgeon told me that it is possible now (although every case is different) and it is done frequently. I go every 2 weeks to get saline injected into the expanders and then I will get the implants.

About the check-ups, I need to see the surgeon in few months and then I will be done with that. I am not taking any hormones. My symptoms after my oopherectomy are very mild,  with an ocassional hot flash and not strong at all. I am taking vitamins, extra calcium and BiOmega, since I read somewhere that it would help me. 

Good luck and all the best!   

Hi Gabi,

The expanders were inserted at the time of the mastectomy and depending on how quick you heal, you can start the saline injections within weeks. Once you reach the desired size, usually a bit more of saline is injected to give room for the implants. I just reached my desired size YESTERDAY!!!!

The plastic surgeon  suggest waiting a month before inserting the implants. Because of my doctor's vacations and other committments I will have to wait 2 months. But that's okay, I can wait, there is no rush!!  The expanders don't hurt at all. I noticed a bit of back pain right after the injections, probably because the muscles are being strecthed. Remember that the expanders are under your chest muscles and that is where your implanst will go.

About the vitamins, I've been taking them for years. After the oophorectomy, my OBG-YN advised me to take extra calcium. I also read about BiOmega and I added that also not only because it is good for you but because I read it might alleviate some menopausal symptoms. I am not experiencing severe symptoms, thank goodness!! Only a bit hot at times and restless at night. I take Simply sleep by Tylenol. It is working like a charm

My email address is rbsaez@optonline.net 

Let me know how you are doing  

I am BRCA 2 + and had a nipple and skin sparing mastectomy with immediate (non expander) implant placement...a/k/a the "Alloderm One Step". I am not sure if there are surgeons performing this surgery in Seoul, but I can tell you it was very do- able. If you go to www.mybreastreconstruction.com it goes into more detail. The difficult thing about nipple sparing mastectomy is that it takes a very skilled surgeon and as a result many don't want ot perform it. It is difficult to do correctly, so many times the surgeons will try and talk you out of it, tell you its too dangerous to keep the nipple. What they SHOULD say is "there ARE surgeons who do this but I am not one of them" but I find instead they try to make the patient think they are making a mistake by keeping the nipple. Now they may want to remove the nipple on the side where the cancer was, but no reason they cannot keep it on the prophylactic side.



Wishiwere, just to let you know there were 2 breast cancers in my family. My mother's which she was dx'd with at 45, and my aunt who was dx'd at 65. I was told by the genetics counselor that according to the risk calculator used by Myriad, the lab that performs the BRCA test, I had only a 4.5% chance of being BRCA +. I just had a weird feeling I was and sure enough I was right. Listen to your gut and have the test.

blah

Hello Ladies,

I was diagnosed at 33 with stage III breast cancer.  There was left mastectomy,chemo, radiation, tamoxifen for 5 years and the tram flap reconstruction.  It is now almost 9 years later and I had the BRCA test done and am BRCA 2+.  My family history consists of a cousin with breast cancer on my mothers side and an aunt on my fathers side who passed on from ovarian cancer.  Wow, there is a lot of information out there.  I am considering the hysterectomy with bilateral salpingo oopherectomy (removing all of the plumbing).  My breast tumor was estrogen positive.  I am hoping that by having this done, that I can just monitor the right breast with breast MRI, since removing the ovaries will take care of the estrogen factor.  I wish they would be able to tell you what side of the percentage you are on the good 50% or the bad 50%.  It would make life easier.  I am only 42 now, so I am not really excited about the surgical menapause, but I guess that would happen naturally anyways.  I hope the fact that I have survived 9 years of breast cancer is hope for anyone else.  I still have a lot of doctors to speak with as I only found out about the BRCA-2+ a couple of days ago.  My reconstruction I am very happy with.  It was not recommended for me to have reconstruction right away due to the fact my oncologist was concerned with starting chemo and did not want to wait if there was complications from reconstruction.  The only advice I can really give is for me since everything was going so fast after my diagnosis, it was better for me to wait for the reconstruction.  One other benefit of waiting is that I had radiation and when the surgeon did the tram flap, he could cut away a lot of the radiated damaged tissue.  I know that radiation can have some effects on breast implants if you would choose that route, so research this carefully if you have radiation.  Good luck to you all.

Nancy