BRCA 1
Hi. My first time to the site. I found out today that I do test positive for the BRCA 1 gene. My Mom has breast cancer at 43 and survived until it returned at Primary Pertional Cancer (PPC) at age 66, died in August 2011 at 67. So my OB wanted me to be tested for the gene, well not surprising to me I have it. So now I have an apt in May to meet with a genetic doctor. I'm sure my options A)mamograms with MRI's added or removal of breast with plastic surgery to prevent getting the cancer. So what do people think of the choices? What seems to be most practical.
Comments
-
Please visit http://facingourrisk.org to find out all about your options, resources, advice, support. It's an invaluable resource for people like us. They also have a conference coming up in June where you can learn A LOT. I highly recommend going if you can.
-
I'd encourage you to research, think and take your time to come to a decision. While I've only had my results for 6 months, and I've already been diagnosed with a primary tumor, I've chosen surveillance over more agressive treatment choices. I'm not ready to lose any other parts of myself despite their obvious disadvantages.
wishing you strength and courage as you work through this difficult process.
-
Hi sony47:
I think you need to take the normal precautions, get a mammogram, which will tell your dr. If you need a biopsy or MRI for further evaluation! I am glad you took the initiative to be tested - it is so Important to get this early!
I was recently diagnosed via mammo and have had a biopsy, MRI and lumpectomy. But it is all an evolution, based on tests! Stay positive, get the appropriate tests and all will fall into place. Best of luck and stay in touch! Let us know your progress! Hugs! -
Again, I highly recommend you visit FORCE for the latest research, recommendations, etc. related to being high risk. Having said that... recommendations for breast screening are yearly mammogram, yearly MRI and twice yearly clinical breast exam. Surveillance for ovarian cancer is a little less clear, but will usually involve pelvic and transvaginal ultrasound once or twice a year. Some doctors also do annual CA125 test (it's a tumor marker, not that helpful if you haven't been diagnosed but it's all they've got for now). Medical guidelines recommend oopherectomy at 40 or when you're done with childbearing. Risk-reducing mastectomy is not in the guidelines, so if you have a doctor who's pushing it you should look for another doctor. PBM (prophylactic bilateral mastectomy) is a personal choice, and a valid one, but so is surveillance.
Also, invisible is correct... you have time to make a decision, so do your research and a lot of soul searching. In the meantime, follow surveillance guidelines.
-
My doctor said that I don't need a mamogram if I am getting a MRI, is that right?
-
Same boat here. I went to the genetics center and they just advised me right now to get appropriate bi-yearly screening. If there is anything of concern in those results then to take action, I will revist with the genetics center every year. They also asked that my maternal aunt, mom and sister took the genetic tests as well to see if they also carry the gene mutation.
-
The book "Positive Results" by Joi Morris and Ora Gordon is an excellent reference. A very good explanantion of BRCA and the decisions surrounding it.
FORCE is a valuable resource too. There is another website - I think it's Bright Pink, for women in their 20s/30s.. previvors.
I am doing surveillance - MRI and mammo annually, alternating every 6 months and clinical breast exams every 6 months. This is consistent with teh American Cance Society and NCCN guidelines.
And, yes, take your time in making decisions...
-
Thanks kt57, I will have to check out that book.
-
Are you getting MRI twice a year? Most insurance plans won't pay for that. The recommendation is to alternate mammogram and MRI, every 6 months. In addition to a clinical breast exam every 6 months.
-
jeskachi, I am not sure if you were referring to me. I just strated this whole process now, I definitely need a call into my insurance to ensure I don't need anything for my bilateral biopsy and I will also check into what they will cover in regards to the screenings. Thanks for that heads up.
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