BRCA - anyone regret getting the test?

BethL

I had the test done last week and I go in may 4th for the results. My GYN recommended getting the test because of some ovarian changes I've been having. She wants to remove my ovaries if the BRCA test is positive.

I have no family history of Breast CA, however I know very little of my family. The only two women that are blood relative of mine are o.k. (aside from cardiac problems). My mother had her ovaries out for unknown reasons back in her 20s, so perhaps she had her cancer prevention then. She is adopted, no history there.

I hope I've done the right thing. I know that it will most likely be negative, but then again, most likely a breast lump at the age of 38 is b9.

anyone regret having the test done? I hope I can handle the decisions if it is positive.

Just a little history, I had DCIS, microinvasive IDC, 2005, er/pr+, HER2-, radiation - currently on Tamoxifen, (which I think is messing with my liver now). A part of me wouldnt mind having an oopherectomy just to get off the Tamoxifen.

I have been quick to say I'd have a b mastectomy and oopherectomy, but truth is, I'm scared of the reality of all of this.

Just interested in hearing your thoughts on the whole BRCA knowledge.

Beesie

I think knowledge is power. I got tested and am glad that I did. I tested negative, but had decided that if I was positive, I definitely would have had an ooph. I'd already had a single mastectomy; if I was BRCA1 positive, I probably would have gone for the prophylactic mastectomy of my other breast but I wasn't 100% decided on that. If I was BRCA2 positive, I'm not sure what I would have done since the BC risk, while still very high relative to the average women, is usually 45% or less.

The test results certainly gave me a level of reassurance that I didn't have before - I'm still high risk, but not as high as I'd worried about. On the other hand, if I'd tested positive, I would have been able to take some pro-active measures to reduce my risk or increase my monitoring. And I think what I'm most pleased about is that I have this information for other female members of my family.

MzzHope

Although I do not regret getting the test..for some people this disease is a crap shoot.After my mom was diagnosed with BC last year,I did get the test. It was negative. And yet here I am. Was it wrong? Was I just another "tag your it" statistic? Are there other genetic factors? I don't know.But I do know that even if it had been postive I would not have had the courage to do the bilateral mast before it was needed.
In any event,I do agree with Bessie that knowledge is power. Hopefully there will be even better and more acurate tests and treatment options in our future!

LisaSDCA

I do NOT regret it, even though my BRCA-1 was positive. I was already leaning toward a prophylactic bilat. mastectomy and now I know it will be therapeutic. The ooph will be performed at the same time (tag-team surgery!).
I am the first woman in my paternal line to live past the age of 35 (there were two generations of sons before it struck my sister) so this info is very valuable to me and to my family. My younger sister has tested negative, so instead of the constant fear she would otherwise have had due to two sisters with pre-menopausal cancer - she gets to be an old lady someday!
My daughter (age 22) will soon be tested and be able to make informed decsions about her child-bearing, preventive procedures, etc. Of course, we are ALL praying she tests negative also, because that will mean the curse ends with me. Without the test, my family on my maternal side would fear for their risk. We know it came through the paternal line and my daughter is the only one at risk.
MzzHope - only a small fraction of familial cancers are identified through BRCA-1 or 2. They weren't wrong - we just haven't identified many other genetic and environmental factors. On the plus side, perhaps your cancer will not be as aggressive as a BRCA-1 tumor usually is.

Lisa

BethL

Forgive my ignorance, After almost 2 years since dx, I'm still learning new things all the time. What are the stats for BRCA1 and 2? I thought the bc risk was the same for both, didn't think to ask.

I also read someplace, can't find it now, that the BRCA2 was associated with some male cancers. Here I've been so glad to have all boys because of this possible genetic error, but I wonder what the course is for them if I am positive. Do they get special screenings as adults? Are they offered the genetic testing if I'm +?

Thanks so much for all the info. I am glad I did it. Knowledge is power, just sometimes I don't want the need to have that power.

Beesie

It's hard to find all the details on this. After checking a lot of websites, I've found that the following website provides the most concise and easiest-to-understand explanation of the BRCA genes, including a summary of the differences between BRCA1 and BRCA2. The BC and ovarian cancer risk is quite a bit higher for BRCA1. Both increase the risk of prostate cancer for males who have the genetic mutation, although I think the risk is higher for BRCA2.

http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs/

If you test positive, then yes, your boys would be eligible to be tested.

jewels20227

I'm a little concerned. My onc told me to wait about 5 years to have any genetic testing done because my daughter is only 10 years old. I wasnt thinking clearly at the time, (still not most of the time) but I have 4 older sisters. Wouldnt they benefit from knowing? Also, I dont have my ovaries and had a partial mast. Would being positive change what I should have done? Both breast removed? Yikes, somtimes I feel like you have to go to medical school to understand and digest all of this stuff! Any info would be helpful.

Thanks!
Julia

LisaSDCA

I agree that the Stanford site is a user-friendly, quick summary of the BRCA gene. But it has one of the lowest figures I've seen for incidence of BC in BCRA-1 positive women. Most accept 80%+ as the risk level.
Bloving - A child of a BRCA positive patient cannot be tested until they are of age to make medical decisions on their own. And FWIW, it is very rare for a BRCA-1 tumor to be estrogen positive.
Julia - if you were to test positive for BRCA-1, you would need to seriously consider mastectomies. BRCA-2 a little less serious a threat, but still substantial. Most BRCA-1 familial lines have a high frequency of early cancers (20's and 30's, not 50's or 60's) so the fact that you have four unaffected older sisters is a good sign.

Lisa

Beesie

Julia,
I don't understand at all why your oncologist would suggest that you wait for the testing. Either the testing is appropriate for you given your family & personal history and you make the decision now to do it or not do it, or it's deemed not to be necessary at all. Since testing positive could impact your treatment and your follow-up process, I don't see any reason to wait, if it's somethat that you want to do and something that your oncologist thinks is appropriate.

And yes, if you test positive, then there is a 50% chance that each of your sisters could be positive too. So there is value to them in your finding out. But.... if you have 4 older sisters and none have been affected by either BC or ovarian cancer, then the likelihood is quite small that the genetic mutation is in your family. Or have any of them had either of these types of cancer?

The website I included in my earlier post provides a good summary of the two BRCA mutations. The following site provides more detailed information about genetic breast and ovarian cancer: http://www.facingourrisk.org/

Lisa,
The facingourrisk site mentions the same 65% BC risk for BRCA1 and 45% BC risk for BRCA2 as the Stanford site, for non-Ashkenazi Jewish women. The % risk is higher for Ashkenazi women. Other sites I've seen quote even lower numbers, but I think that the Stanford and facingourrisk sites are among the more reliable.

jewels20227

I dont have any family history of cancer. I remember him saying that the tests would be better in 5 years and would be more appropriate for my daughter. But from what your saying, If I'm BRAC1 then perhaps I should have had a mast? This has been bugging me for awhile. I have my last chemo Friday and will talk to him then. I refuse to think I havent done everything I can to ensure I dont have to live every single day of the rest of my life in fear. What we fear, we attract.

Thanks so much for all the info. I really appreciate it!

Julia

Beesie

Julie,
It's true that if you are BRCA1 positive, you might have decided on a mastectomy, but from what you've said, having 4 sisters and no family history of cancer, I think it's extremely unlikely that you would test positve. Actually, with your family history, I'm curious as to why your doctor even suggested the possibility of genetic testing in the future. Usually genetic testing is suggested either for women who have a family history of breast, ovarian or prostrate cancer (on either side of the family) or for women who may not have any family history, but were diagnosed at a very young age, perhaps are Ashkenazi Jewish (a high risk group) or perhaps have few family members (meaning that there isn't much opportunity to track any family history). You don't fall into either category - you have a large family and no cancer history in the family. It sure doesn't sound as though you are at risk for the BRCA mutations.

jewels20227

Beesie,

It's probably because I was so upset about my daughter. I was only 44 when diagnosed so not sure if that's considered young? All of my sisters are under the age of 52 so not sure if that's also the reason. I know if my initital meeting with my Onc, I was most concerned about my daughter. That's when he said to wait 5 years as the genetic testing would be that much better. He wasnt concerned with it affecting me. I think I'm just freaking out a little bit as I am having my last chemo tomorrow then 6 weeks rads and I'm done. I'm triple neg so no more meds. I just want to make sure I've done everything possible for my family and myself.

Julia

Visualize it and it will become reality!

boolie

When I asked my GYN about being tested after my sister was dx in 2005. He said it depended on what I would do with a positive result, as testing positive didn't mean I would get BC. My nannie (fathers side) died in 1972 after a long fight with bc, various other great aunts have had ovarian, cervical and breast cancers. Mum and Dads generation seemed to have skipped it all so far.
My sister was 39 when she found her lump, I am now 35. I had a mammogram in 2005, which was clear, my lumps were cysts, and still don't know whether to do the genetic testing or not.

I've been naughty and missed my gyn check up last year.. made an appointment today... May the fourth. Guess I'll talk to him again about testing, and what it now costs, German health care leaves a lot to be desired sometimes, with no symptoms I'll have to pay for my next mammo too.
So fingers crossed that the lumpiness is still the old cyst problem.

Beesie

Julia,
Why don't you ask your oncologist to refer you to a genetic counsellor? Then you will understand your risk level and the implications for yourself and your daughter, and you can decide from there what you want to do.

From what you say, I don't think your oncologist understands genetic breast cancer, or he's not being very clear in his communications. While he's right that in 5 years the testing likely will be better, it makes absolutely no sense to worry about your daughter but then to say that it won't affect you. The only way that your daughter can affected is if you are too (unless your daughter inherits the gene mutation from her father's side of the family, which is a different situation from what you are talking about here). Either you have the gene mutation in which case there is a 50% chance that your daughter will have it too, or you don't have the gene mutation and then your daughter can't have it (again, unless she got if from her dad's side of the family). So if your oncologist isn't worried about it affecting you, then he - and you - shouldn't be worried about it affecting your daughter. In that case, there is no need to test either of you, either now or in 5 years. Of course, if in 5 years several more cases of BC or ovarian cancer show up among your sisters, then the family history will have changed and the situation will be different.

Kathy_R

I, too, am going for my test results on May 4. I have a heavy family history( mom, grandmom, aunt, daughter)I am leaning towards a bpm and oomph if positive. I am not sure I am ready to hear the results but I can no longer live with my head in the sand. As a 5 year survivor, triple neg, I feel that the time has come. I was considering genetic testing and a pbm in 2000 when my aunt was dx'd but chickened out. I went for the initial consultation but never followed through and low and behold in 2002 my dx came, then 6 months later, my daughter. I am really anxious and popping Xanax to cope. I do not regret this decision at all.

jewels20227

Beesie,

I think that's a great idea. I will talk to him in detail about it tomorrow. Thanks so much for all your help!

Julia

BethL

Thanks so much - I have learned a lot here. It seems that if I am positive for one, it's probably BRCA2, being estrogen receptor positive. Hopefully I'm not pos for either one. I wouldn't want my sons tested until they were definitely old enough to make that decision on their own. I wonder if men are screened carefully when the knowledge of having the BRCA mutation is present.

It's something I'll be asking my onc next time I see him, just out of curiosity.

sahalie

I have bc history on both my mom and dad's side of family and aunt (mom's sister) All had mastectomy's a zillion years ago.

My BRCA tests came back negative.

bethany68

Hi!

I do not regret having the test. Although I tend to think that it was a false negative. My mother, and both paternal and maternal grandmothers all had breast cancer. Now I've had it in my left breast, and less than two years later, found in my right breast. I think what I have is genetic, it's just not showing in the test. Wishing I could have them retest...

Beesie

Beth,
Most genetic counsellors will agree that science is a long way from discovering all the genetic mutations for breast cancer. So your testing negative on the current BRCA tests might be correct - the problem could be that the genetic mutation that's affecting your family simply hasn't been discovered yet. I tested negative too and my genetic counsellor told me that I'm welcome to come back to be re-tested should I hear about a new BC gene that's been discovered.

Anonymous

I recently attended a hospital seminar on "Genetics and Cancer" which was given by a board certified genetics counselor. She spoke primarily on breast and colon cancer (coincidentally the 2 cancers I'm at high risk for due to family history). She said they are coming up with new enhancements for the genetic tests all the time now, so that they are now recommending people who test negative for the BRCA genes should come back and be retested within 6 months to see if they still come out with a negative result. I was surprised to learn that you could test positive later on. (however, she did not talk about whether or not insurance companies would pay for additional testing or not).

jlrphoenix

I also just got the results of my genetic tests and I am positive with the mutant gene,brca2.I am leaning towards a b lateral unless someone can convince me other wise.I am not afraid.I need to do what needs done.It is just another chapter in my book of life.

hi5-2006Aug13

I am glad I had the test and will be having my ovaries and uterus removed. The risk of getting ovarian cancer is very high when you have the brca gene. I had a bilat last May before I even knew I had the gene. My daughter has the gene too and will be getting her ovaries removed and will have thorough breast follow up at genetic/ high risk clinic

dawnsie

I don't regret having the test done. I had no family history and wound up with stage 3 breast cancer IDC. So we did chemo first and the tumor shruch from like 8 cm to 2cm. So I decided to have a lumpectomy pending genetic test results. I somehow cam back BRAC- 2 mutation. I opted for bi-lateral and do not regret my decision. I will have my ovaries removed when I do my reconstruction exchange from expanders to implants. I'm lucky, I am 36 years old and have two healthy children (girl and boy) so I was never sure about having a third child but now - I'm done. I need to try to be as healthy as possible for my two children who are five and two.

Currently three weeks into my radiation (which is also being done for preventive purposes). It is a long hard process but day by day I am getting better and do not have any regrets.

Do what you believe you can handle and don't regret or look back.