Anyone BrCa positive and looking to talk???

Hi Flo,

I am awaiting my results this week, fri to be exact. Mum is BRCA 2 positive so I suppose I just have to wait and see what happens.

Which BRCA are you? When were you diagnosed?

I would like to chat with you if you like?

It's a waiting game at the moment and it's very hard to think about anything but the results at the moment. I am a fairly level headed person however I am feeling anxious about how I will react if I am positive!

Regards,

Molly

Hi Molly,

Sorry you are waiting for results. It is not an easy time. Fingers crossed you will come back negative.

I was diagnosed in June 2006 with Breast Cancer. Due to my family history (mother, her sister and their mother) dying from BC, I asked for genetic testing and came back positive for a BrCa2 mutation. I decided (at the suggestion of my oncologists) to removed my ovaries in April 2008 to remove my risk of Ovarian Cancer and reduce my risk of another BC. I have the option of a Prophylactic Bilateral Mastectomy but have not made up my mind about this yet. I am now 40 years old. A single mum of a 4 year old boy.

I have found some informative websites and support groups in the US or UK but nothing yet in Ireland. Hoping to get one going soon.

I can be contacted at flohoward at eircom dot net

Nice to hear from someone so quickly. Thanks for replying.

Flo.

Hi,

I have a mutation on my BRCA1 gene. I've known about it since 2005 and it hasn't really made much impact on my life really. My family has a really strong family history of breast and ovarian cancer. My mother was first diagnosed at 39. I'm 36. I've just had my second child 8 months ago and I'm finished with having family. Now my consultants are advising mastectomies and oophrenectomies, hysterectomies etc..I'm a bit unsure. I want to be around to see my children grow up etc.. but I'm worrid about the side effects of ovarian removal especially even with HRT.

I'd love to hear about anyone else's experience. What were the surgeries like? How was the recovery? Are you happy with the decisions you made?

I'm leaning towards surgery but am looking for reassurance I suppose,

Thanks for reading,
Fiona

Hi Fiona,

Sorry you are a BrCa 'mutant' (!) like myself. Its good to hear that it hasn't had any great impact so far on your life. Some people find it very difficult to cope with the idea of high risk. I hope I am now one of those who is practical and prudent about my health without being a paranoid freak.

While you are trying to decide about surgeries, etc, are you in any screening programmes? You are entitled to both a mammogram and breast MRI yearly (I usually space both out so I am checked roughly every six months) and a pelvic ultrasound and CA125 blood test to keep an eye on your ovaries.

I have had breast surgeries as a result of my breast cancer diagnosis in 2006 but am due to go ahead with a double mastectomy with reconstruction later this year. I had my salpingo oophrectomy (ovaries and fallopian tubes) in April 2008. I obviously had no real choice when it came to the first breast surgeries. I struggled with the bilateral mastectomy for many reasons but in the end decided to go for it for both the risk reduction and cosmetic benefits (I am pretty lopsided since the BC). It surprised me that I had no hesitation at all about removing my ovaries and tubes and have had no regrets since doing so. The hot flushes are not bad but I am currently having some minor issues with vaginal dryness which I hope to sort out soon. My main concern is the longterm effects of it with regards to my bones. I do worry I will be crippled with arthritis/osteoporosis but will deal with that issue IF or when it comes.

Here's a couple of websites that might be of use to you. They can seem very pro-surgery but that is because people looking into surgical options are the ones posting questions and looking for info. But there is usually surveillance info and support on them too. Mostly I just use them as a sounding board to share my story and vent my feelings or doubts. As well as help others if I can! www.facingourrisk.org

www.brcaumbrella.ning.com

Regards,

Flo.

Hi Flo,

Thanks for your reply.

I have been involved in screening programmes for about 10 years now, even before being diagnosed with the mutation on BrCa1 ( mammograms, MRI, ovarian screeening and Ca125 testing). Nothing has shown up and I know I'm being monitored much more closely than family members of my mother's generation, which eases my mind.

I think I'll probably go ahead with the surgery but I have some time to decide as my next apt with a consultant is not until end of August. Thanks for the websites. I'd already registered with brcaumbrella and joined the Ireland group.

Thanks again,

Fiona

Hi Fiona,

If you want to research the different types of reconstruction after Mastectomy, many people highly recommend The Breast Reconstruction Guidebook by Kathy Steligo. Its available online at Amazon and other sites. I have only read excerpts but she is good at explaining what options there are in relatively plain english.

Also, regarding the ovaries, several consultants recommend leaving them until you are 40 or over. This may be different in your case, depending on the age of diagnosis of your family members. I chose to leave the womb as it supports other organs and makes the operation harder to recover from. But talk in detail about this with your consultant, I think there may be advantages to its removal with regards to HRT.

Also if you decide to remove your ovaries, make sure they know to remove the fallopian tubes as well and that the lab use the correct 'BRCA protocol' for testing your tissue. This means they need to do more sectioning than usual, particularly of the tubes I think, to check for any cancerous or precancerous cells. I had my oophorectomy in the Mater hosp in Dublin and the lab there did all the detailled checking that is recommended.

Stay in touch and let me know how you get on.
Regards,

Flo.

Hi all i run a facebook support group that is private for all affected or thinking they might be by BRCA1 and BRCA2 IN Ireland and UK https://www.facebook.com/groups/193319190876332/
Iam BRCA2pos and have had surgery all welcome x

Hi Guys
I am brca1 positive. My mother has ovarian with secondary in her lungs. I had breast cancer in 2012,lumpectomy, chemo and rads. Just had my first meeting with surgeon since genetic test results. I know I want a mastectomy and recon but it's a matter of when really. Worried about the end result more than anything else. Doctor wants ovaries out at age 35. This is where I am worried as I am 32 and no sign of periods yet. She saying I need to start trying for a family now if I ever want one. I know I don't have to do what she says but with my mums history I am petrified. At least with most breast cancers you can feel a lump. Ovarian is more sinister. I do feel that knowledge is power but the decisions when have to make are massive.
Ann