Kinda BR: Genetic Testing for Mom-to-be

deviousmuse · March 2014

Ok, so over the weekend, we found out that my dad tested positive for the BRCA 2 gene mutation. This one has a 50/50 chance of being passed down to children (me and my sister), and if you have it, there is ~50% chance of getting breast cancer and ~15% chance of ovarian cancer (these % are lower than BRCA 1, but still nothing to sneeze at). We've also confirmed that my dad's aunt, who passed away from ovarian cancer, has the gene, as does my dad's sister and her daughter (my first cousin). We are assuming that my grandmother also has it, but seeing as she's in a nursing home and not always lucid, the additional stress didn't make sense. My aunt got a prophylactic hysterectomy and oophorectomy (removal of uterus and ovaries) after her diagnosis (she also got a tummy tuck while she was at it, and that was the only thing her mom was told).

My OB asked that I tell her when we confirm the results so we can discuss my testing options and then birth control for after the baby, and we'll have that discussion next Monday at my 16-week appointment.

All this background to ask...

1) Would you get tested? Is knowing better than not knowing? (Yes, there are insurance considerations at large as well.)

2) If you found out you had it, would you get any prophylactic surgeries?

3) Is there anything else you can say to talk me off the freakout ledge?

beckynsean11 · March 2014

I'm in a similar position. My maternal great grandmother passed away from breast cancer & one of my maternal aunts was also diagnosed with breast cancer & had a double mastectomy 3 years ago. I also have an extensive cancer history on both sides of my family. So my OB really wants me to 1) find out if my aunt tested positive for BRCA & 2) get tested regardless of her results.

I'm going to go ahead with the test. I think I just want to make sure I'm getting screened frequently enough to catch something as early as possible. I don't know that I would be willing to have surgery though, just based off a positive genetic test. I figure I'll deal with that if the time comes.

I wish I had some words of wisdom to pass along here, but it's scary shit. Good luck to you!

brittneyandadam · March 2014

Please keep in mind that having this mutation only increases your risk, it doesn't mean you will absolutely get cancer. With BRCA2, your risk for breast cancer increases to 45% by a certain age (I think the age of 80). So, the younger you are the less risk you have. Also, knowing you have the mutation, your doc will start screening procedures early (mammograms) and can help you avoid other risk factors such as hormonal birth control etc.

This is a really personal decision, so I don't want to tell you what to do. Some ppl want to know as much as possible so they can make proactive decisions and others want to just live their life to the fullest and not worry.

Since you are asking opinions:
1) Yes, I would get tested.
2) No, I would not get surgery right away. I'd opt for preventative monitoring and reassess with my doctor as needed.
3) Wait for results to come back first. You don't need to make decisions right now, the 'what if' will drive you nuts.

MrsLaLaBug · March 2014

I only learned within the last 3 years that a couple of women on the paternal side of my family have had cervical cancer. Since I am currently dealing with round 2 of this cancer myself, I have already discussed a partial hysterectomy with my OB, and will most likely be doing it after this baby is born.
However, one factor that helped me consider the removal is that this is baby #2 for me, and DH and I have discussed and are in agreement that 2 is a good number for us. The first baby was miracle enough, this one is just another Godsend.
I feel too young to keep wondering about how many more surgeries/treatments or how many more times it may return. I know these aren't your circumstances, so obviously you've got to make those choices for yourself. I will say this - You can live aware, but don't live afraid! Don't let a "might" or a "maybe" turn your soul negative, and you'll be just fine!

jg1011 · March 2014

For me, I'd get tested, but then be sure we were on top of screening exams.

Not sure if I'd opt for surgery as precaution that quickly . Maybe in time with discussion with all involved---drs and DH.

deviousmuse · March 2014

Thank you so much for all your kind words and reassurances, Ladies. I'm thinking along the same lines of step 1: get tested, step 2: discuss all of my options with the genetic counselors and my doctors.

Whew. Just too much for my hormonal pregnant mind to process sometimes!

JD83 · March 2014

DH and I are in a similar situation: same river, different boat. He was recently diagnosed with Lynch Syndrome after I kept pushing for genetic testing and the docs were concerned about his family history of colon cancer. The specific mutation that he has increases the risk of colorectal cancer by almost 80% and increases the risk of so many other types including pancreatic, ovarian, uteran, kidney, and even brain cancer, and God knows what else. Needless to say, we are concerned. However, by getting a positive diagnosis, that serves as justification for our insurance to pay for a very aggressive screening schedule.

Bottom line: while it sucks to have this weighing on a family, knowing is so much better than wondering. Forewarned is fore armed. If you know there is an increased chance, you're more likely to catch it early and increase your chances of survival.

1) It is always better to know and without the positive test, insurance may not pay for the extra testing
2) No, but through extra testing, I would likely opt for a more radical surgery if the disease did strike.
3) Knowledge is power, but risk doesn't mean destiny. Deal with the hurdles as the come. You may not even have the mutation. Fingers crossed for you!

JSS1002 · March 2014

I haven't read the other responses. One of my best friends recently had a similar situation. Her paternal aunt passed away from breast cancer,so her father got tested and was found to be a BRCA carrier. She got tested (her sister did not), and was also found to have the gene.

She had one child already,so she and her husband got pregnant really quickly after finding out the results, and once her LO was a few months old, she underwent a double mastectomy.

Amazingly, when LO#2 was 6 months old, she got "accidentally" pregnant -- really, it was crazy, she was recovering and had 2 small children, so not a lot of sexy time was happening, plus she'd had issues getting pregnant with #1 and possibly with #2 (I didn't ask).

At the time of delivery, she had a routine c/s, and they removed her tubes as well.

Closer to age 40 (we're 36), she will have a full hysterectomy and whatever else her doctors recommend to help keep her cancer free.

So, to answer your questions:
Yes, I would find out. No questions.

Yes, I would have whatever surgery recommended to help keep me cancer free.

Talk you off the ledge: All I can tell you is that one of my best girlfriends (different than the friend above) battled breast cancer with two small children, and she beat it -- so it is possible, but every day is scary. She elected to NOT have a mastectomy, just a lumpectomy. If it were me, I would have removed my breasts to help prevent cancer from coming back - not just for me, but my husband and children.

It isn't a death sentence - I would imagine that thousands of women before us have carried this gene and never found out... knowing could have helped prevent or treat cancer... I would actually consider it a gift, not to HAVE the gene, but to find out if you do.

JSS1002 · March 2014

JSS1002 said:

I haven't read the other responses. One of my best friends recently had a similar situation. Her paternal aunt passed away from breast cancer,so her father got tested and was found to be a BRCA carrier. She got tested (her sister did not), and was also found to have the gene.

She had one child already,so she and her husband got pregnant really quickly after finding out the results, and once her LO was a few months old, she underwent a double mastectomy.

Amazingly, when LO#2 was 6 months old, she got "accidentally" pregnant -- really, it was crazy, she was recovering and had 2 small children, so not a lot of sexy time was happening, plus she'd had issues getting pregnant with #1 and possibly with #2 (I didn't ask).

At the time of delivery, she had a routine c/s, and they removed her tubes as well.

Closer to age 40 (we're 36), she will have a full hysterectomy and whatever else her doctors recommend to help keep her cancer free.

So, to answer your questions:
Yes, I would find out. No questions.
Yes, I would have whatever surgery recommended to help keep me cancer free.
Talk you off the ledge: All I can tell you is that one of my best girlfriends (different than the friend above) battled breast cancer with two small children, and she beat it -- so it is possible, but every day is scary. She elected to NOT have a mastectomy, just a lumpectomy. If it were me, I would have removed my breasts to help prevent cancer from coming back - not just for me, but my husband and children.

It isn't a death sentence - I would imagine that thousands of women before us have carried this gene and never found out... knowing could have helped prevent or treat cancer... I would actually consider it a gift, not to HAVE the gene, but to find out if you do.

Also, her new fake tits look amazing and she doesn't have to wear a bra anymore. ;-)

deviousmuse · March 2014

I am seriously almost in tears just from the support for all of this.

And for those going through the same thing, I hope we all receive the best news possible, in whatever situation we find ourselves.

formerwigirl · March 2014

Go for the testing. I had it done because my mom has breast cancer and a few of my aunts have ovarian cancer. I was found not to have the gene, but feel like if I did then I could have dealt with what I needed to do. I look at it as even though I don't have the gene I will still keep up on my appointments, when I get to that age, because you just never know. Plus if they find it early it is more easily treated. My mom found hers while at stage 1 and is going great.

Good luck to you!

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