Brca2 positive no family history

AlexaP

I was diagnosed with infiltrating ductal carcinoma node negative, hormone negative, 18 years ago. I had mastectomy and chemo and tram reconstruction.  They have found what they think are cysts in opposite breast which will be biopsied later this month... Meanwhile dr ran bloodwork and highly suggested I get the genetic testing done... It came back that I am brca2+. So now the dr is recommending that I have mastectomy after the biopsy and have my ovaries out. Thankfully we ran a ca125 which came back negative but she says everything's gotta go to give me the best chance (uterus already gone).

I'm worried about the surgical menopause but mostly I'm worried to tell my family. There is NO family history of either breast or ovarian cancer. I know it had to be there somewhere but I came up with it. My mother is 90 and has gone through so many health issues and is finally doing well.  I'm afraid this will push her over the edge.  I have two special needs children. My husband has a new job and insurance is one of those crummy savings accounts deals. It is all weighing very heavily on me.  I want to wait until I know what's going on with the biopsy so I will have all my facts straight before I tell anyone. It's been really hard keeping this to myself.  I would love some words of encouragement.  I'm grateful that my new dr stressed that I should get the test done.  I'm wondering why my old dr who retired did not... But in any case,just looking for a safe place to vent, ask questions and also offer support when I can. Hoping this is the place.  Found a couple of other support groups where ppl,are more interested to be bossy and mean. Boo on that!

lintrollerderby

I replied in your other thread, but wanted to add to please feel free to vent. Are there any questions you can think of? I'd be happy to try to answer them.

farmerlucy

Hi Alexa - So glad you found us. Crossing my fingers and toes that the biopsies are benign, We ARE a safe place so PLEASE rant away. Sound like your doctor was very proactive re:BRAC  test. I know it isn't the news you wanted but at least now you can address your risk. When I was dx I was loath to tell my 80 yo dad because my mother and sister had cancer. You know what he said? He said, 'I'm eighty years old. I've seen a lot of things in eighty years. We can handle this."  Gentle hug to you. Please let us know how everything goes.

PS Do you really have to have the biopsy if the mx is a given? Just wondering.

AlexaP

since it's a needle biopsy she feels like we should go ahead and do it... Maybe if it's benign they would be more willing to do skin sparing for easier reconstruction. No tram this time I'll just have an implant I guess. Looks like its time to call my old plastic surgeon and get his input. Geeze. 

AlexaP

thank you!  I'm sure I'll be back with plenty of questions... Just holding it in is so hard.  I have no idea which side of the family it came from - my dad's family is gone from heart disease. My Brother passed from diabetes. Will have to tell his girls and my mom.  My kids are adopted so they should probably get tested at some point. Wow I never realized how far reaching that test would be. Took me by surprise and I think my dr was as shocked as I was!

lintrollerderby

Yes, please do ask any questions you can think of. There is a lot of knowledge on these boards and almost always someone here who has a similar circumstance. 

The good news is that if you're willing to share your test results (the name of your specific mutation on your paperwork) with your family members, then any relatives who test will only have to do single-site testing which looks for that confirmed mutation that's in the family. The cost is much less than full-sequence testing, and is usually about 10% of what your test was. 

I'm very sorry to hear about your brother. I lost my brother also.

Since your kids are adopted and probably don't have any medical information about their birth families, BRCA testing might be indicated at some point. However, just keep in mind that if they never develop cancer (hopefully!) and are testing to establish family history risk, it puts their results in a different light. It's not straight forward for someone who has never had cancer to be the first in a family to test. If they got a negative result, they would be what's referred to as an "uninformed negative". Meaning there could still be a BRCA mutation that wasn't identified. In contrast with your results, if your blood relatives test negative for the mutation you carry, they would be what's called a "true negative". 

I got my BRCA mutation from my dad. It was able to hide in a male-dominated small family for the last few generations. You're absolutely right, the effects of this test are far-reaching.

Huz

Hi Alexa,

My sister went through a short denial phase when I informed her of my BRCA 2 diagnosis, she is now being tested, and my father is still coming to terms with it 6 months later, but they saw things went well for me so it made it easier. I also had no family history of breast or ovarian cancer, my mother died of pancreatic cancer about 20 years ago so I suppose she was the carrier and she must have inherited the gene from her father whom she never met. I was tested because I had a DCIS at 43. I had a double mastectomy in March, heading for my exchange surgery later thing this month, as well as an oophorectomy back in April that put me in surgical menopause. I'll be happy to share my experience if you have questions. 

Hang in there, 

Huz

AlexaP

thank you Huz.  How has the menopause been?  I'm so worried about mood swings!

Huz

Hi Alexia, 

I haven't noticed any changes in my moods, I have always been even tempered and no changes there.  I have some mild hot flashes, very tolerable so far. The only uncomfortable change is the vaginal dryness,  trying over the counter remedies (replens), and if it does not work, I'll go back to my oncologist/GYN to get the e-ring or tablet. I talked to 2 oncologists before the oophorectomy and they both confirmed this is ok even for breast cancer patients. My libido is not great, but I would be surprised if it were after a double mastectomy, I assume it will get better once the reconstructive surgery is all done and I feel more comfortable with my new "parts". No changes so far in my hair or skin, no confusion, no weight gain or major sleep issue. I take menopause specific vitamins, I don't know if that helps. 

I hope it helps, I read so many horror stories on the internet before my surgery, I was expecting the worse but it has not been bad at all. I feel relieved my breast cancer was caught so early that I avoided radiation and chemo, I don't have to worry about ovarian cancer anymore and I'll be screened for pancreatic cancer and more vigilant about my health in general. I am glad I have a chance to see my son grow up, and with all the medical research going on, I am confident cancer treatments will get better and better.

Huz 

westiemom

Hi Alexa. So many things happening at once but you're doing the right thing by venting. I'm BRCA 1 positive, this pretty much made the decision for me of having a bi-lateral mastectomy, then I went thru chemo. Oncologist allowed me a month after chemo to recover and build up a strong immunity, then I had a bi-lateral oophrectomy - trust me - I fought against it but my onc said based on the genetic testing it was the best course of action, turned out I had cancer starting on both sides of my Fallopian tubes, very rare. Breast cancer runs in my family but ovarian does not. I say all this because like you,  I didn't want to be placed in to medical menopause and really felt an oophrectomy was not necessary or I could put it off for a year. I'm glad I had the surgery,  but good lord menopause sucks! I had hot flashes for about a year, got really bad at night, melatonin and remaining calm when having a hot flash really helped. I only had mood swings for about a month, nothing too bad, still married Lol! I have no regrets with my decision, it saved my life. Keeping you in prayer Alexa and sending positive thoughts. Please keep us posted. Take good care of yourself. 

AlexaP

thanks for the good advice and empathy... It is so helpful to simply be able to speak to others who are going through the same thing... And also reassuring to hear practical advice and experience!  DH isn't a big talker so if I keep venting to him I have no idea what's going through his head... I'm not sure if I should let him be, I think he needs to deal with this but he's so closed off that I don't know if he is or not. He will say he's fine when he's not just so it doesn't upset me but I keep telling him we are going through this together and I would rather have his honest feelings rather than what he thinks I want to hear...

The first time I went through bc my husband (who later died in an accident) went into complete denial and was very angry with me for being sick... We never got to resolve that...  Now I'm afraid this will happen again, even though my "new" dh has always been there for me through everything else... I think I have more PTSD over that than I do over the prospect of having bc again... Geeze it's all so complicated.