BRCA 2+..still want to have children.. what can I do?

Oh, dear, how scary! I understand you must feel floored.

Yet, you must think and remind yourself that so far, you are fine. Your DX just say you are at high risk - but there is no reason to take steps that WILL interfere with your childbearing options.

later on, in a few years, you may take more aggressive decisions - or maybe, medecine will have advanced and you will have different choices. So far, I feel that there is no reasons to be too dramatic!

I am 45, and am BRCA2. yes, a couple of years ago I was DX with BC. before that I had my kid (and I could have had more), and had I known as you do that I had a defective gene I would have followed up better my risks. I also have a family history.

I suggest you take a positive spin on it. Possibly, get a second opinion, and discuss it with your family and friends. Life is about taking risks... but also about doing what you want. What life would that be otherwise???

Note that statistically, Ovarian cancer hits after 40. That is why your doc hints at age 40... 

I don't think you're being dramatic at all.  I'm also BRCA 2 pos with virtually NO family history.  Dx with bc at age 35 and in the midst of reconstruction.  I'll have my ovaries out at the end of this year (age 37).  Those risks are way too high for me.  But, I've already had 3 kids and we were done.  Have you checked out the website for FORCE, facingourrisk.org.  It's specifically for us genetic mutants.

 You're facing a tough decision, and you'll need to do some research, speak with your genetic counselor, and docs. I've read that with BRCA 2, pregnancy increases our risk of bc due to the estrogen.  So in every other woman, pregnancy helps decrease the chances of bc, but in us it does the reverse.  Look into that, as well.  That being said, there are women on the FORCE boards who went ahead and had their families as planned, then did their surgeries.  There's also a surveillance forum and a forum for previvors (those who have the gene but haven't had cancer).  I hope these are helpful to you as you make these decisions.

BTW, if anyone "judges" you for the DNA mutation that you had nothing to do with, they need to have their heads examined!  There wasn't anything we could have done to prevent this genetic abnormality, any more than we could have altered our eye color.  I also think that if anyone accuses you of being dramatic or even hints at that, you must pay ZERO attention to them.  You've been put in an incredibly difficult position--to make tremendously hard decisions NOW that will affect the rest of your life, your husband's life, and the life of the child you already have.

FWIW, I had some very close family members who insinuated that my decision to have a preventative mast of my right breast was drastic.  Mind you, I had already been dx with bc, had a left-sided mast and chemo.  When I got my BRCA test results, I knew I had to remove the other breast.  The way a couple of family members reacted was less than supportive.  I made up my mind to ignore them b/c honestly, they were speaking out of ignorance.  I went ahead with my plans and feel good that I've done whatever possible to minimize my risks.  Some people just don't get it.  But you should have all the facts for yourself to make an informed decision with no regrets.

Oh, I didn't realize you had 2 kids already!  My genetic counselor said they don't test for the gene in people under 18, and let's hope by the time our kiddos are that age, cancer would've been eradicated!

One thing that cancer has taught me is to not throw my opinions around to people when I have no idea what they're really going through.  For example, I've never miscarried, so how can I know personally how that feels.  My best friend miscarried 5 times, and I shared with her in that sorrow, but it's never happened to me personally.  So, when a person judges us for taking steps to prevent our potential DEATH, in the face of cold, hard statistics, they're judging from a place of utter ignorance.  I had a relative tell me when I was first diagnosed and was thinking I'd have a lumpectomy rather than a mast, "Oh, I would just want them both chopped off."  Like breasts are moles or something!  Then, when I told her about my BRCA status and said I was planning to have another mast she said, "Well, don't rush into any decisions."  I was like, huh?  What?  So, I have surely learned to keep my big mouth shut so I don't hurt/offend/confuse someone who's dealing with tremendous challenges.

Phew!  Can you tell this subject fires me up?  Someone said on the FORCE boards that preventative mastectomies for BRCA carriers is elective surgery --we elect to live!!!  I loved that!

Yes, I went through chemo and it wasn't easy, but I made it through.  It was mostly hard b/c I've got 3 young kids who I homeschool, so it's not like I could lay around and sleep all day, KWIM?  But, by God's grace I got through it.  I'm now in the midst of my expansion process and will have my permanent implant placed sometime at the end of May or beginning of June.  The expander is very uncomfortable for me, but I keep reminding myself it's not forever!

Gosh, I just have to say with all my heart, that if I were in your position, knowing your BRCA status, I would do all I could do NOW to prevent having to go through what I've gone through and what so many others have had to deal with.  On this side of the fence, it's a no-brainer.  Not a nothing, simplistic decision mind you, but a no-brainer.  I know that's easy for me to say since I've dealt with cancer already and do NOT care to revisit it.  But, I was BRCA tested in Nov after finishing chemo and even then I knew that if it was positive, I would have the other breast removed and ovaries out.  I want to live a long, long life and raise these boys, then have oodles of grandkids who I can feed chocolate, then leave when they're spazzing out, LOL!

Hope my experience helps you, and I hope it hasn't overwhelmed you.

I'm also BRCA2-much older than you, with 2 children in their 20s! Our daughter (age 24), has been tested, and we know that she too carries the gene. At this age there's little that can be done in terms of monitoring her, but we know what to do if we're concerned-and we know that she'll be prioritised.

When I was diagnosed a few years ago with the misprint, we were naturally devastated-butI don't recall ever feeling guilty that I'd passed the gene on-it's not as if I had any choice in the matter! Naturally, we would have preferred it if she's inherited her father's genes on this, but it was not to be.

I'm not sure about the situation in the U.S, but testing children here isn't an option until they reach the age of consent (18 here)

In all honesty, carry on with your life and plans as before, in terms of having a family. By the time they're older there's every possibilty that the gene misprint can be succesfully manipulated. Genetics is a rapidly developing field, and has made such astonishing progress in the past couple of years, that the possibilty of eradicating the faulty gene in the near future is a real possibilty.

Hi there MKMS22

First of all, I hope you are doing fine and that you have had a good discussion with your genetic counselor.

Even though there's been a while since the last discussion on your thread I wanted to share with you my experience on this situation, that is, having BRCA2, facing the choice of having more children and making decisions on so many things that is difficult to just think about.

I was first diagnosed with BC at the age of 31.  I asked for a check up since my sister had recently been diagnosed at the age 35 and we have a strong family history of BC.  Since I had an early diagnosis I did not need any chemo or X-rays, I had a mastectomy and reconstruction at the same time.  At this time I had a little girl and we had been considering adding a child to our small family.  I was not able to have my genes tested at that time, but my sister lives in another country and she was diagnosed as a BRCA 2+.  So I knew it in my heart that I was to.  Since I did not have the option of genetic counseling and my doctors were not that involved in those matters, I was told that nothing would be against having more children; it would be up to me to decide.  But as I say, I knew it in my heart and I really had difficulties facing the big questions: what if I transfer the gene, will I get cancer again, should I demand having the other breast removed, what about my ovaries etc.

To make a long story shorter, we decided to have a go on another child.  It took us a bit longer time to make it happen, it seemed not as easy as before, but finally we made it.  We had another baby girl 2 years ago, she is a wonderful creature and a great sunlight in our life.  I really could not think of our life without her.

A year ago I finally had the chance to have my genes tested.  As I knew, I am a BRCA2+.  After I had the confirmation, I was offered more frequent check up, including MRI.  I also had the opportunity of second Mastectomy.  Since I was still breast feeding with my one breast, I delayed my check up until I had stopped lactating.  I also could not make up my mind if I should have the second mastectomy or put my faith on the massive check up.

After 14 months of breast feeding, I finally had my MRI.  It turned out that I had developed a new BC that had spread to my lymph nodes, so now I am having Chemo, following with X-rays.  It's easy to be wise afterwards.  But don't get me wrong, I have no regrets for having my beautiful baby girl.  My regrets are on the breastfeeding part, what if I had not tried to do the "right" thing, breastfeeding?   Or at least have done it for a shorter time?  So if you decide to have a go on another child, please take that into consideration (or you might even consider having mastectomy before conceiving).

Regarding guilty feelings, I have somehow managed not to have them.  But I am scared for my girls and their future.  My girls will not be tested until at the age of 18.  I guess I will have to live with my worries until then.  I really do hope that the genetic science will have developed at a great speed while I wait.

I really do hope my experience helps you, it is by far not my intention to hold you back in any way.  Good luck!

Joel, are you sure you got a real deleterious mutation? I ask because there is a chance that your test hasn't been done in a proper professional manner ... so maybe the results weren't interpreted correctly too.

Since your sister is BRCA1+, you probably should have been tested just for her specific mutation (the only valid exception is for patients with Ashkenazi Jewish roots, where 3 common mutations are usually tested all at once). But apparently it didn't happen. Instead, you got a much pricier / slower test of the complete genes, both of them? 

Several percent of people have "uncertain variants" in their BRCA genes, especially in BRCA2.These variants have no proven role in cancer, and in fact most of these variants are absolutely benign (just not common enough for the studies to prove their benign character yet). Unfortunately sometimes the physicians misinterpreted the uncertain test results. Genetic Counselors are supposed to be on top of these gene variation intricacies, but just in case... Do you have a copy of your lab report? Does it say "deleterious mutation"?

I had my genetic test done at Johns Hopkins.  They tested for the 3 defects common in Ashkenazi Jews.  My results show "deleterious mutation" for BRCA2.

I would think that parents (or those looking to become parents) would do what they can to provide the best for their child.  Isn't a 50-80% likelihood of early onset cancer worth avoiding?   Has the survival rate for breast or ovarian cancer changed much over the last 20-30 years?  I'm counting on (and so is my genetics councelor) similar outcomes 20-30 years from now.

 As for legitimate reasons to abort - many people abort simply because they are not ready for a child.  Isn't this an even better reason?

My sister (who is BRCA1+ and was diagnosed with BC at age 39 and had double mastectomy & ovaries out) tells me that if I have a child the "normal" way, that would be the ultimate in selfishness.  What do you think of her opinon? 

Joel

Thank you Mutd.  You sound like a very informed and thoughtful person.  As my wife and I work our way through this decision process, ideas and information like what you provided will certainly help us. 

The 2 people I know who are BRCA1+ who had not yet been diagnosed with BC both did the same thing - preventative removal of ovaries & breasts.   I think I would have done the same.

 However - it sounds like in your last post that careful monitoring followed by surgery as a treatment may be substitute for prophalactic surgery.   Now - I'm not woman, so I can't quite put myself in those shoes - but wouldn't one want to reduce one's risk of cancer as much as possible?

 Thank you.

This is a really old topic, but I found it when looking for information on the same topic. I have a viewpoint similar to your sister's that hasn't been shared yet, so I wanted to voice it here in case others may run across this as well. There are at least two research papers out on the topic, and they show that people--mainly women--are definitely more likely to think twice before having biological children the traditional way. You are not alone. Joel, I hope you came up with an answer that worked for your family.

I'm going to explain how we felt. This doesn't mean it's what is right. I just hope I can give you a window into what your sister may be feeling.

I have a mother and brother who are BRCA+, as am I. We knew that my brother wanted to have biological children. This hurt us, because we felt it was a denial of what she and I (especially she) have been through in our lives. He distanced himself from our health struggles when we went through them; and later implied that his child(ren) would handle things better than we did. He also argued that there was a 50% chance his child(ren) would be male, and a 50% chance of them not having the gene. He also argued there's likely to be a cure for the defect soon--which would be wonderful, but I personally think is unrealistic.

Women worry more than men and often have more empathy. I worry into the generations. I wanted to stop the curse with my generation, since (in our generation) we were two of two people with it. I won't feel any better if the children are BRCA+ males . . . because they may have BRCA+ daughters. The lack of knowledge of a generation harmed by the gene may cause a more lax attitude toward it--I feel that females lacking adult relatives with the gene may be less likely to take action (screening, prophylactic surgeries, etc.). It would be easier to live in denial.

I knew even before I was diagnosed that I would choose not to have biological children if positive. My mom confided that she would have chosen not to have children had she known, and I respect her decision. This is because we both know firsthand what it's like to have surgeries and/or cancer, in a way a male could never understand.

No one can tell or force someone else not to have a child--that's eugenics, and it's wrong. However, I know that this issue has ripped my family apart. Almost every day I'm reminded that someone in my family chose to play Russian roulette and ignore the females in his family, who tried to share their firsthand experience and opinions and concern for future generations. We feel devalued as human beings, and we hurt for the future generations who we may never even know.

It's unfair that those of us who have to deal with such serious issues as cancer also have to deal with family issues on top of it all. At a time when we most need our family, issues like this can cause such a rift. We're the first generation to have to deal with such difficult questions and issues. There is no easy answer. Let us hope and pray that in the future, for future generations, there will be easier answers, and that the paths we are on today may help them be better informed in making the decisions of tomorrow.

When I heard I had breast cancer in November of last year, I was 36 and no children.  So I went through fertility treatments (I only had one cycle to get the eggs I needed since I had to start chemo).  I have two embryos waiting for me.  After I went through fertility treatments, I tested positive for BRCA 2.  That's not going to stop me from trying to get pregnant with them.  What's worse is that I was diagnosed with first generation BRCA 2 (currently forth person in history)...so I didn't even have a family history to blame it on!

 Just because I have the gene doesn't mean they will get it...and even if they get the gene, it doesn't mean it has to develop into cancer.  So I'm not letting that stop me.  Anymore than having alcoholics in my family is preventing me from having children.  LOL! 

 Life is one big, messy risk.  Go for it!

Brenda, there are several discussions on FORCE forums about cutting the ovarian risk by removing tubes only (the most recent one, with the info about trials, is here) ... because there are recent indications that most ovarian tumors in BRCA1+ women actually begin in the fimbria of the tubes. But is it even possible to collect eggs for IVF without tubes? And will it give you peace of mind if there are cysts on an ovary?