Any long term BRCA2 survivors without recurrence?

Nanka

Hi all... I am most likely BRCA2 and am freaking out. The future looks grim being that I read everywhere that I have a 50% (or more) chance of developing a new primary. They caught my first cancer early and the prognosis is good. Now I have to worry about this? I am asking for words of wisdom from those who are in my predicament. Thanks so much!

Michelle

MiniMacsMom

My Mom is BRCA 2 and 60 with no cancer ever.  I am 29 now and UMX Rt side.  Left still looks fine but I'm only 6 mo out.  I know its not much, I hope others pipe in soon!  You could also try the facing your own risk website for Hereditary cancer survivors and previvors.

Miller1353

Cross your bridges as you come to them, Michelle. First, get confirmation of your BRCA2 status. The thing you need to remember is that even if you are BRCA positive, there is always hope. I made informed, thoughtful decisions about my health after my surprising BRCA1 positive test. Make sure that any information you read online is current. So many of the stats are dated, and might scare you silly.



My onco put my recurrence rate at 67%+. I do not know where she got that number, but it got my attention. I had a PBM and hysterectomy which lowers my risk to 5-10%. It was not a hard decision for me, but I respect that others have struggled with their decision.



My onco says that my prognosis is determined by my tumor size and number of nodes, not BRCA status. It took awhile for me to wrap my mind about the cards I was dealt in the genetic lottery of life. If you are positive, there is an active, informed Facebook page called the BRCA Sisterhood. Also, the website FORCE (www.force.org) is full of information for BRCA positive men and women.



Best wishes as you travel this long, winding road. PM if you ever need help.



dawn

Nanka

Thanks for your replies. Your risk after BPM has gotten my attention, Miller. I will definitely speak to my medical team.

Michelle

mar8dar

I had IDC with lumpectomy march 2003 later diagnosed with BRAC2. Had my ovaries removed and bilateral mast with reconstruction. This march I will celebrate my 10 yr anniversary and still cancer free. I was 39 when diagnosed

Nanka

Wow! Awesome Mar8! Love these kinds of stories! Thanks for sharing.

Michelle

fighter33

Hi Nanka, Congrats!!! I am 37yo and am now faced with the decision of having my ovaries removed. Since you had it done at a young age, I am curious as to how you felt that it affected your life after the surgery.

Nanka

Hi fighter...I think Mar8 is the one who got her ovaries removed. I am just toying with the idea. Still undecided and that and BMX.

IllinoisNative

I'm two years out from diagnosis and no signs cancer right now.  My doctor told me the BRCA gene just tells you the liklihood of getting breast cancer NOT whether it will come back or not.  That's determined by the type of cancer you have, how soon they caught it, the treatment you have, the size, grade, number of nodes, etc. Every cancer is different.

My doctor also told me that BRCA 2 is less likly to cause ovarian cancer than BRCA 1...and it occurs later in life (I'm currentlly 38).  He told me I could wait until my late forties before I had my ovaries removed.  Ovarian cancer tends to me more of a risk after age 60 in BRACA 2 women.  Good luck.

Sandals

I went against the doctors advice to have a bilateral mastectomy and oopherectomy and have not had a recurrence within 4 years.

renahen

Hi Michelle. We are all different, of course, but here is my experience. I was diagnosed in1986 at age 37 with an aggressive cancer (ER/PR neg, but there was no HER test back then). I had 22 positive lymph nodes. It's been 26 years and no recurrence and no new cancer. I was tested in 2005 and came up positive for BRCA2. There are no guarantees, but all we can do is live our lives and be vigilant. I hope that, with time, you'll be able to relax and not worry so much.

Nanka

Wow! Thanks for sharing. I am so happy for you that you have had no recurrences for that many years! Have a great day!

Michelle

mc_in_nc

Nanka-

Any updates on your treatment. Our situation sounds the same when looking at your dx, surgery, and chemo. I'm also BRCA2+ and after I finish chemo, my oncologist wants me to have a bilateral mx. I haven't decided on more surgery or radiation that typically follows lumpectomy?!?!?!

Nanka

Hi mc, I am not allowed BRAC2 tests since there is not enough breast cancer history in the family but they most certainly think I have some kind of gene becauseI had breast cancer at 40 years old. Haven't gotten a bilateral yet but still thinking about it. I'm just tired of worrying about when the next shoe will drop. Honestly, if it was confirmed that I was BRAC2, I would definitely do it, but that's just me because I am a worrier. You may want to ask others who are confirmed BRAC2 on this site.

Good luck to you!

Michelle

Leigh74

My mom and I are BRCA2. She had bc at 46 and again at 58 BUT she initially had only one breast removed, did tamoxifen and hysterecomty, and then 12 years later had a new primary in her other breast. She then had that breast removed and has been cancer free 7 more years. I have also been told BRCA has nothing to do with recurrence. I am currently going through treatment for bc now and my doc has been more concerned with my oncotype score than my BRCA status in terms of distant recurrence rates.

Nanka

Thanks for your input Leigh!

Michelle

Peachtree65

I found out in April 2013 at the age of 48 that I carry a deleterious BRCA2 mutation. I had myself tested because my parents died of breast and prostate cancer (both in their 50s), so I don’t know who I got it from. I am lucky in that I have not yet had cancer, and neither has my older brother.

QuinnCat

Our family carries the BRCA2 886delGT mutation. My mother and two of her sisters had BC, all age 53 when dx'd. My mother and one Aunt had it in the 1960's. No mammograms back then. Some awareness of estrogen blocking, but I don't think they could test for receptors then. My mother's was caught late. My Aunt never treated hers. The other Aunt was dx'd in the 1970's, had a UMX for a rather large tumor and died at age 80 of bladder cancer. The bladder cancer was thought to be caused by her diabetes drug. Don't know if she had a hysterectomy, but no ovarian cancer.

My cousin was dx'd at age 56, Stage 1, Grade 2 (high grade 2), but tumor 6mm. Had lumpectomy, radiation, no chemo. Her tumor was estrogen positive, but she ascribes to the school of estrogen being protective, so she took estrogen instead of blocking. She is 62 and NED. She still has her ovaries.

My mother's parents both had cancer. Her father at 42 - gastric cancer. The original thought was he carried the brca2 gene, but I was around my grandmother's family and I think my mother's maternal cousin and maternal aunt had BC in their 50's (also in the 1960's). My grandmother had some sort of long (8 hours) abdominal surgery in the 1960's. My cousin thinks her mother said it was ovarian. I always thought it was colon (I was 11 years old). If she was the brca2 carrier, and not my grandfather, she lived another 10+ years after that surgery and died at 89.

Nanka - since the SCOTUS ruling against Myriad on the brca patent, other places are doing brca testing now. It may be much cheaper.

Love to read these stories!!!!!!!!

Nanka

Wow! So interesting Kam! Thanks for sharing the information.

Michelle

mc_in_nc

Leigh74 - What was your onctotype score? Mine was a 28 so that's why I'm doing chemo now. I have one more treatment left then I I'm scheduled to have 30 radiation treatments since I had a lumpectomy in July, OR I can have the BMX?!?! Did you have a lumpectomy or MX?

QuinnCat

Oddly - after describing my whole brca2+ family history above, my cousin who had BC along with the rest of us (her mother, my mother, etc.), same age, post menopausal, turned out to be brca2 negative. She got tested in Canada in the post-SCOTUS decision on Myriad world, so not sure if that means anything (false negative?). Just very odd. That leaves me as the 1 in 9 cousins in brca2 possibilities as the only one having BC and brca2 and I'm the youngest of the 9.

Leigh74

my score was 24 so not closer enough to the bottom of the gray area. I finished yesterday. Woo hoo!!!

Leigh74

I am not doing radiation. I am kind of odd in that I did a prophylactic masteomy and then found breast cancer almost two years later.

Allydp

I just learned of my BRCA2 mutation today as a matter of fact and discovered this section of the forum. My paternal aunt is the only other female on my dad's side (gene side) and she also had the same triple negative breast cancer I have. She's won't be tested, but the assumption is she's obviously a carrier. She was diagnosed at 43 and chose to remove just the one breast. It recurred 10 years later in the other breast at which point she had that one removed too. Today, she is 71 years old and doing fantastic! She beat this monster twice and lives to tell the tale. She is such an inspiration to me. I hope her story will inspire others. 

Nanka

Wow! Fabulous story Allydp...thanks!

thinkpink4ever

I just found out that I'm BRCA2 positive.  DX #1 at age 40.  Recurrence DX on May 1st -same breast.  I went 13 years NED.  That's a blessing, and I am forever thankful to my Heavenly Father for these healthy years.  My hope is to have a BMX with immediate DIEP.  On my way to see my PS in 45 minutes.  I'm on an emotional roller coaster, but I'm praying and that keeps me going.  I've already had a hysterectomy - that was at age 42....

One love,

tp4ever

Footballnut

hi all. I will be having a genetic consult next Tuesday. My mom had cancer "form there" as she says in her 70s. She's 91 now. My aunt had breast cancer in her 80s however we are descendants of Ashkenazi Jews. As I was recently diagnosed with breast cancer it was recommended that I explore this

So we shall see