Any BRCA+ women here?
I just had a PET/CT last week and it was clear. But then the onc. told me I am BRCA2 +. So now I'm facing having a bilat. mastect. and my ovaries removed. How do deal with this bit of news? Here I thought I was getting the dx behind me -- finished chemo in October and just finished rads in Dec. I'm scaring myself thinking that I have this lurking genetic mutation that is just going to keep rearing its ugly head.
Rachel
IDC 4.5, grade 3, ER/PR+ and yes, nodes. Now BRCA2+
Comments
-
Hi Rachel,
I am BRCA 1 +, so are two of my sisters. We all both removed, and hysterectomies.
It sucks. But, we are all alive and 'well' now.
Good luck with all your procedures girl, and best wishes for speedy recoveries!
Hugs, Traci
-
I'm BRCA2 postive too! Yes, it's no fun to get the news... I was shocked, as I was the first in my family to get BC -- no breast or ovarian cancer in my family at all!! My parents were tested and my dad was the carrier. My sister is positive too. She had a prophylactic mastectomy last year and will have her ovaries removed once her 3rd child is born (she is pregnant now).
I didn't find out I was positve until after my single mastectomy so I had the other side done one year later and ovaries removed at the same time. The oophorectomy was a piece of cake (laparascopic).
Feel free to PM me if you have questions!! I know it's hard to swallow but once your shock is gone and you go through your surgeries, our prognosis should be no different than BRAC negative people -- that's what my oncologist has told me!
take care,
Jackie
-
I am BRCA2+. Breast cancer has been in my family for many generations (it was already called the Caudill curse in my great-grandmother's generation--Caudill was her maiden name), but until I had the test, no one was able to put a name to the reason why.
My mother died of BC at the age of 49. I had DCIS 20 years ago, and a mastectomy for a recurrence 6 years after that. My sister had BC and BMX 10 years ago, and ovaries removed 5 years later. I'd been asking my gyno what I should be doing...get ovaries out...Mx of remaining breast, etc because of my high risk, but she didn't see any reason to rush into it.
I finally decided to change to a new dr who was a little more action-oriented, and on the first visit he insisted I go for the genetic testing. I found it I had BRCA2 so went immediately to the breast surgeon and said...get it off! When they sent me for a mammogram and MRI to prepare for the surgery (mind you, this was only 8 months after my last clear mammogram), lo and behold I've got a stage IIIc cancer with a mat of it in the nodes 4 inches long (but flat so I never felt it). So here we are.
I don't have any children, but my sister has two daughters in their late teens. She is still trying to sort out how/when to tell them what to do, when to get tested. My other sister got tested and doesn't have the gene. It's bad enough having a genetic issue (but at least answers the question how I got it...so maybe it wasn't the bourbon, phew!), but hard thinking that my young relatives may also have it too and have to deal with it before they have a chance to think about having a family.
What no one seems to know is whether having the gene will affect my risk of recurrence at this point, or not.
-
Hi Rachel.,
I'm BRCA1+, and am just finishing up rads (2 weeks to go) after chemo and surgery. i am having an ooph in early March. i didn't have a BMX - i opted to have regular MRIs instead to catch a reoccurence, becauise my onc told me that with stage III BC already then a BMX won't change my life expectancy (because potential mets are a much bigger risk than a reoccurence in a breast). However, since ovarian cancer is extremely difficult to catch until it is advanced, i am having them removed as soon as i finish tx.
Can i ask how old you are? (I am 40) my onc said she recommends to wait until 35 to have the ooph, even if you areBRCA+
-
I'm BRCA1+. I just did my BMX last week and doing a ooph in few a mths. I'm glad I did it was what I wanted as soon as I found out I was +. For me it is scary enough to think this monster might show it's ugly head again so whatever I could do to stop that I wanted to do. I guess there are no guarantees with any of it but I wanted to be as aggressive as I could.
-
Hi there...
Latte, I am now 51, but was dx at 49 yrs. 11 months. Originally, the onc. and surgeon I saw at a teaching hospital didn't want to do the BRCA test. They figured I was too old. However, my local onc. thought it had been growing in my 40's and I made the BRCA insurance cut off, so he checked. Interestingly, I have no family history of breast, ovarian, colon or prostate cancer. What gives?? I do have a hysterectomy scheduled for next week. I'm hoping and praying that it negative. I just had a clear PET/CT so can I dare to think all will be well?? Then I want to have the BMX asap. However, I just finished rads in December, so I don't know how long I'll have to wait.
Hugs,
Rachel
-
I'm 44, dx with bc just last year, BRCA2+. I had no known family hx except for a half sister who had bc at 41, BUT she has since tested negative for BRCA2. I had bilat mx Oct 2010. I think I was numb from the end of August clear through the beginning of chemo in November. I just finished 4 rounds of T/C, and getting ready for exchange and ooph next week. It's a shock, to say the least.
How do we deal? Well, sometimes we don't do it very well and that's normal. You do the best you can to get through the rough spots even if you have to take one second at a time. And then you live your life to the best of your ability as you would have without this knowledge. Don't let the genetic thing rob you of your life... because it can if we allow it to do so. I have one daughter, 19, positive and one daughter, 22, negative. My son is too young for testing. It isn't easy, that's for sure.
-
My 30 year old daughter had her first breast scan yesterday. It was an MRI. She lives in Vancouver, BC and was told that she would get a call from the nurse in the next two weeks on the results. She decided that she wasn't ready for testing even though my mom and I tested postive last November. Instead, she's in the high risk group so it's an alternating MRI and mammo every 6 months.
Now that she actually had the scan I find myself worried. My logical side knows that it is highly unlikely that anything would be found. We don't even know if she has the mutation or not. And BRCA 2 rarely results in cancer at that age. But the mom side of me is worried. I wish she'd get tested but I have to respect her choices.
-
I dreaded the test when my mom tested postive, my sister tested negative, I think deep down I new I had the gene. I got the test after injurying my breast, they thought the lump was a hemotoma becasue it didn't act like a tumor. I got my Brac 1+ test the same day I was dx with Stage IV breast cancer at age 29. Needless to say all the relatives that had refused to get the test got the test, there is still a few holdouts. With cancer age doesn't matter, becasue I am young I have been able to handle the treatment with really no side effects, and currently I am NED for the past 18 months.
-
I have the BRCA2 gene. My mother died at 59 from BC, her younger sister at 44yo, and another sister had it at 60 and survived. I had an oophorectomy last October; the surgery itself was easy, and I've had limited hot flashes. I'm 41, however, and already have two children, so the fertility issue was nonexistent.
Yes, the sad reality is, the damn gene exponentially raises the risk. Maybe sitting with a genetics counselor and mapping out the pros and cons...my cousin is 30, has the gene also, and is taking her ovaries out @40yo, no matter what (and is pregnant, happily). I'm only citing her story to illustrate how every woman is different, with different priorities.
Good luck to you. Feel free to PM me about the ooph if you want -
Janyce
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team