Just found out I am BRCA1 positive

brucci1

Hi I am new to this site , I just found out I am BRCA1 positive, I am scheduling appointments for consults but i am looking to hear from you guys, i have been looking at many of your posts on the subject. ovaries removed and double mastectomy or tamoxifen and regular checks but will probably do the ovaries I am 49 yrs old thanks guys!!!

inks

So sorry you have found yourself here. Have you looked at Facing our Risk , they are more geared at previvors and their boards have more ladies doing the preventative surgeries. The new recommendation for BRCA 1 is removing the ovaries at age age 35 and mastectomy. Removal of ovaries was easy for me since I kept my uterus and it was done laprascopically. Mastectomy is no biggie either but reconstruction is a bit harder. Good luck!

Moderators

brucci1, welcome to BCO. We are sorry that you are here, but glad you found our community. You have a lot of decisions to make, and we hope that our wonderful members can share their experiences to help you make the best decision for you as possible.

brucci1

Thanks, yes am going to doc next week about removal of ovaries.like you said I am not too worried about that but then will be facing the decision of mastectomy and reconstruction, which is what I am leaning towards, i wanted to see if others have chosen that route instead of the tamoxifen and continuous surveillance.

jawyn77

Received call on Friday that my test came back that I do have the BRCA mutation. Still not sure if its 1 or 2 or both. Huge family history of cancer and illness in my family. I go in Monday to talk with my doctor and find out more, but he did ask me to do some research over the weekend, which is how I stumbled upon this forum. Extremely overwhelmed at this point. I have always been very healthy and assumed that when I did the genetic test it would be negative but guess I was wrong.

Glowa1

I too am BRCA1+. Found this out after I was diagnosed with stage 3 bc at the end of 2007. My oldest daughter was tested soon after. She too is BRCA1+. At age 29 she was diagnosed with stage 2 bc. We found out last week my second daughter, age 30, is also BRCA1+. We will be seeing the genetic counselor tomorrow. My oldest daughter did opt for double mastectomy/oophe Surgery to be done in her mid thirties, but the CA diagnosis came first. My second daughter is also considering both surgeries.

My mother died of BC/ovarian CA in 1971. So there is a strong family history. I have another daughter 22yo that will be tested next year after she graduates from college. Out of my 4 siblings, my brother and I carry the gene.

This is a horrible situation to deal with for anyone. My head is still spinning as to how 2 out of 3 of my girls have to deal with this. But we will take things one step at a time.

Brucci1, I wish you well. You will make the correct decision.

brucci1

Thanks, I wish you and your daughter's good health and peace of mind with whatever decision they make. I have consults with 2 doctors next week I am probably going to opt for the double mastectomy and ovary removal.

brucci1

Sorry you have found yourself here as well, you will feel alittle better when speaking to your doctor. I did but still have to face the decision as to what is right for you. I have 2 consults next week. I want to get start the procedures soon only because my mother died at 50 and I am 49 , I guess I just have it in my head that I need to have it done before then. Good Luck to you in whatever decision you make

brucci1

Anyone who has had the prophylactic surgery... can you tell me how the recovery went and did you have reconstruction right away or have to wait

Moderators

jawyn, glowa, and brucci, welcome to each of you!

We're so sorry you're dealing with this genetic diagnosis, and how it's affecting you and your family....

If you'd like some more information, we suggest you check out the main Breastcancer.org site's pages on Genetic Testing, which includes information on what to do with the results once you have them -- positive, negative, or uncertain.

We hope this helps!

--The Mods

Fixator2012

I am BRCA 1 positive and had a Prophylactic Double Mastectomy and OOphorectomy with Immediate Reconstruction at 49 yrs. of age. My sister was diagnosed with Stage 3 Ovarian Cancer, metastatic adenocarcinoma, at the age of 41 and is also BRCA 1 positive. I chose a DIEP (deep inferior epigastric perforator) reconstruction; they use fat and skin from the lower belly, but no muscle, reducing the risk of a bulge or hernia. This is a very long surgery, mine was 12 hours. The most important factor in a positive outcome, is the vetting of the surgeon(s) you choose. One will be a Breast surgeon and the other a Plastic surgeon. Do you research on their experience with the "DIEP" method and I also recommend looking at the results of their other DIEP patients...they should have pictures of their work for you to look at. In any case, don't be in a hurry to heal, as there will be 2 different surgical sites, your breast and your abdomen, which must heal.

Catblue

Hi nice to meet you all I too have the BRCA1 gene found out in jan 2015 along with my older sister. My mother died of ovarian cancer at 54 and my grandmother and her sister were both in their 40s with breast cancer when they passed.

New to forums but just looking for people going through the same thing . I have opted for both oopherectomy all though advised to have by the age of 38 (im only 33) so thats fine. Also started the process of mastectomy with reconstruction going to see psychologist in aprox 6 weeks to which after go to see breast surgeon.

My sister only opted for oopherectomy which is now completed and she is happy with that decision.I on the other hand just feel if i dont do this for me and my young children and husband ,that I will definatley regret it later life if i get cancer and have to leave them early as my mum did I would never forgive myself that I was lucky to have the oportunities as I have now.

Sorry bit deep haha but this is what sways my decision and just wondering if anyone the same and what was the outcome of their surgeries good or bad??

Moderators

Hi Catblue and welcome to Breastcancer.org! You've definitely found the best place for support from others who are experiencing what you are!

We know you're faced with lots of tough decisions right now, but we're sure the other members here will help you navigate these decisions, and share their experiences.

We look forward to continuing to hear from you; please keep us posted on what you decide!

--The Mods

Soancika

Hello all,


New to this forum. Got my positive BRCA1 results last weeks. My grandma got breast cancer in her late 70ies, and then my sister got it at 32. Turns out she had the mutation. Planning on having oophorectomy and most likely the masectomy, have 3 little kids and don't want to take any chances. Worried about passing it to my kids. Really scared of the surgeries but it has to be done.

Moderators

Hi Soancika-

Just wanted to welcome you to our community here at BCO. We're sorry for what brings you here, but we hope you find the support you need as you face these tough decisions!

The Mods

twins11mom

Two weeks ago, I also found out that I am BRCA1 positive. It's been a roller coaster of a ride since finding out. I've already met with my OB/ GYN about a hysterectomy as well as a breast surgeon about a double mastectomy. It's a tough decision that hasn't been completely made yet, but I feel like it's what I need to do in order to see my children grow up. And I think I'd rather have surgery now and not wait on a cancer diagnosis and have to go through the surgeries and chemo / radiation. I'm thankful for a site such as this for women who may be facing some of the same obstacles I'm facing!

Moderators

Hi twins11mom,

We welcome you as well to BCO and hope we can help you through the process.

Please keep us informed as to what you decide, and know we are here for you.

You may also find this section helpful: What to do if your results are positive

The Mods

Rach33

I was just given my positive result for BRCA1 ..my sister has milk duct carcinoma stage 2 but only doing preventive chemo. She will be getting all removed when done treatment. I'm not sure what to do ?iI hope this community will help me make the right decision

Moderators

Hi Rach-

We want to welcome you to our community here at BCO. We hope you find this to be a supportive place as you navigate your options and make a decision.

Making the decision to take preventative measures is a very complex and personal decision. Many of our members have shared their stories, and you can find out more about the options available to you on our main site: http://www.breastcancer.org/symptoms/testing/genet....

Good luck with whatever you decide to do, and know that you're not alone! We are all here for you!

The Mods

lynn1970

Hello,I also have the BRAC1 gene also,I found this out in 2006.I had my ovaries removed two months after finding out.I was having mammagrams,Mri's and ultrasounds one of each every 4 months,now I have a mammagram and Mri six months apart.It has been discussed with me by a few doctors to think about a double masectomy.I am ready to take that step..I am really not scared just want it over with.I feel I am very thankful to know that I have the gene,and thankful that I have the chance to prevent it,not everyone gets the chance..I am sure to many its a hard choice to make,but it wasent for me..I pray to god I never get told that I have cancer..I wish you the best of luck...

Moderators

Lynn-

We want to welcome you to BCO, and to thank you for sharing your experience. It sounds like your experience has been a positive one, and that you're happy with the decisions you've made. We hope, if you decide to go through with the mastectomy, that you're surgery is successful and your recovery is swift. Thanks again for sharing!

The Mods

Girl53

Hello all. Question to ladies who have found out you were BRCA positive: Were you only tested for BRCA 1 and 2, or did you have a multi-gene panel that included things like PALB2, etc.? My doctors are recommending testing, but I don't think I want to know if I am positive for genes that heighten my risk of cancers other than breast, when I can do little about it. Should I just ask my counselor if they can test for BRCA and PALB2, and nothing else? Thanks for any insight. You ladies are brave and amazing.

Catey2

Hi, new here too. I have tested positive to BRCA 1 as has my sister , after being diagnosed with stage IV ovarian cancer. My two daughters, thankfully have just tested negative. Earlier this year I had my ovaries removed following a scan which showed they were enlarged. Negative pathology, so good move there. I am fairly sure I will have a prophylactic double mastectomy but am concerned about the length of the surgery and the recovery time.

Has anyone any experience with a reconstruction done, perhaps 12 months after initial surgery?

Thanks

Moderators

Hi Catey and welcome --

You may want to reach out to the members in our Reconstruction forum to ask about their experiences with recovery and reconstruction.

We hope this helps!

--The Mods

Queen_Celeste

[I posted this earlier this week but it has disappeared.]

I was diagnosed with breast cancer in February 2015 (age 60) and underwent genetic testing then at the request of my surgeon.  Neither she nor her nurse explained anything about it or asked me any questions.  It was only after reading up on it that I learned that being Ashkenazi was a risk factor.  No doctor, nurse, or mammogram technician had ever suggested or even mentioned genetic testing to me.  I don’t think that any of them knew what “Ashkenazi” is.  That’s what I get for living in Kansas!

My mother had breast cancer, but there is no other breast or ovarian cancer in my family that I know of.  I know almost nothing about the medical history on my father’s side.  My paternal grandmother died at age 31, and some great-aunts and cousins
around age 60.  My sister wants to be tested and is appealing the insurance/Medicare denial of coverage.  (They don’t know with whom they are dealing – they should just give up!)  I don’t think my brother has been tested, and neither have my first, second, or third cousins that I know of.  I have given them all the information I have.  You can lead a horse to water ....

I was tested only for the 3 Ashkenazi founder mutations and am BRCA1 positive.  Insurance covered the testing and my copay was $75.  I had a bilateral mastectomy in April, chemotherapy May-September, and exchange surgery in October.  I will be undergoing a prophylactic salpingo-oophorectomy-hysterectomy (fallopian tubes/ovaries/uterus) on November 17.

 

Teric

Received news today BRCA1 +. I am 42 and they just barely did the test on me. I was first diagnosed with breast cancer at age 25 and again at age 34. Stage 3 advanced triple negative. I'm frustrated that when I had asked about testing years ago they blew it off. Due to bc I have already had double mastectomy and ovaries were removed a few years ago due to benign tumor. I now need to take my 20 year old daughter in for testing and am scared for her. I do not want her to have the same crappy path I have had. Amazing how it never really seems to go away. . Also Im surprised at how they will not test my son until 18. All I know is cancer sucks!

Moderators

Yes, Teric, cancer does suck! Sounds like you made some really difficult decisions some years ago, ones that would have been probably suggested had they known about the BRCA1. At least you know that you have done everything you could surgically. Are you in treatment now? We understand how difficult and anxiety-provoking t is to have children tested. Please know, you are not alone, and you will all get through this.

Big hugs, The Mods

Smuz

Hey, I’m 24 years old and just found out I carry the BRCA1 gene. I don’t have any children but both me and my long term partner were planning to in the next few years. I’m worried Doctors will try and tell me to just monitor myself with scans ect but I’m worried that they can monitor as much as they like but if I catch it in my 40s/50s it’s too late. I’ve been looking into both the breast and ovarian surgery however it says it is recommended at age 35. Is 24 too young to have this? Both me and my partner are considering having a child sooner than later and then having surgery to help reduce the risks. What are people’s opinions on this?

farmerlucy

I sorry for the news, but also glad you have the info to make decisions. I would find a great genetic counselor at a university hospital or similar and have him/her start following you, if you haven't already done so. IMHO starting your family sooner is a great idea. I imagine you probably have a few years before you have to make the heavy duty surgical decisions. The breast cancer is generally an earlier onset than the ovarian cancer, so you could put the ooph off a bit longer, and even just have your tubes removed when your family is complete, before you do the full blown ooph. I spoke to a gyn onc and he said tubes out by 35, ooph by 40, but that was a few years ago.

You are so wise to face this now. I'm sure it is extremely upsetting to have to deal with this. Take it step by step. Believe me it is far worse to deal with the lifetime uncertainly of a cancer dx, than it is to take preventive measures when you can. Be sure to checkout the FORCE website as well. Big hug to you.

Moderators

Hi Smuz-

We want to welcome you to BCO! We understand this is a lot to process at such a young age, but like FarmerLucy said, it's so good that you have the information you need to make some decisions. She offered some great advice, and we just want to say that this community is with you every step of the way.

The Mods

Smuz

thankyou so much for your advice. I would definitely rather take all the preventative measures than risk it!