2nd dx -- Benefits of genetic testing?

Lisbeth

Hi gang,

I had a mastectomy/chemo/rads 14 yrs ago for a great deal of DCIS. That DCIS was HR-.  Just got dx'ed a couple of weeks ago with a new very small DCIS in opposite breast - this time it's HR+. 

My question -- my medical team is really emphasizing getting genetic testing. The thing is, there is absolutely zero breast cancer in my immediate/extended family. Nada. So I'm assuming I am not carrying a BRCA1 or 2 mutation. 

Assuming I'm negative for those, are there any other benefits to genetic testing that might inform my treatment?  This is the part that's not clear to me.

Thanks for any insights!

LNBCA

Is there any history of men in your family with prostate, colon or pancreatic cancer? No women with ovarian cancer?

JoanQuilts

Sometimes the mutation can start with YOU!  I also had a dual diagnosis, 19 years apart.  I had BRCA testing after the first diagnosis, and BART testing after the second.  I was negative on all counts, but wanted to know for sure, because a positive result would have implications for my ovaries and potentially for my sister and children.

Lisbeth

Thanks!  I had a great aunt (on my mother's side -- my mother's aunt) who had ovarian cancer and beat it at age 40. I don't think there is anything else anywhere else on either side of the family. Would we have seen more action if there was a BRCA  mutation, or is one incident like that, from a distant relative, enough to indicate the mutation is there?

Thank you!

dlb823

Lisbeth, if by chance you have a genetic mutation, that could very possibly factor into tx decisions.  In other words, if your bc has a genetic propensity to return, more aggressive tx now might be recommended.

Personally, I don't think 2 bc dx's, including 1 that was DCIS, 14-years apart strongly indicates a BRCA 1 or 2 mutation.  But researchers are constantly looking at other gene variants, trying to find links.  So perhaps if you have one of those variants that information could contribute to a future genetic breakthrough.

If you have or plan to have children, that would be another reason to know, so that prevention and screening recommendations are followed from an early age.      Deanna

anamerty

@lisBeth I wondered the same thing 19 years ago my sister passed from breast cancer age 33 she was the first in our family get breast cancer 5 yrs later I got it then another sister about 6 yrs ago it was on her daughters request that I did the genetic testing my sister couldn't cuz she was already menopause and at my dx I wasn't anyway it was done and I have the brca1 then all family members tested and all carry it so it didn't prevent me from getting cancer the first time and didn't prevent this new triple negative one I have this time

1Athena1

Hello, Lisbeth,

I don't think there is a right or wrong answer. Personally, I don't see any benefit in genetic testing. Genes are not destiny; indeed, there is a whole discipline called epigenetics which is about the interaction of genes and the environment. Also, significantly, the majority of women who are diagnosed with breast cancer do not have a history of the illness in their families.

I happen to think the hoopla over genes is overblown. My decision has been to not seek testing. I go on facts and not fear. I thinks docs like testing because they think they can advise us better. But the truth is...that nobody has the truth on BC. Genetics are rather a false substitute for what is really a field of many unknowns.

dogsandjogs

I had have had to IDCs 28 years apart. I am 76. Don't know if the age matters, but nobody brought up genetic testing. Not the surgeon, nor the 3 oncologists I saw.

JoanQuilts

Hi Athena:  I'm not sure I understand your stance on BRCA testing.  It has been shown that women who have a positive BRCA result have a much increased chance of cancer in the contralateral breast and/or ovarian cancer and one can make treatment decisions based on this.

I've had two breast cancers - 19 years apart - the first time when I was very young (pre-menopausal).  I tested negative for BRCA after my first diagnosis and for BART more recently after my second diagnosis. 

However, had I tested positive I would have had my ovaries removed. No way would I mess with the possibility of such an increased risk of ovarian cancer.

1Athena1

Joan, I think two good/intelligent people could have opposing opinions on this. Some want to know and some don't, but the only thing that really matters is whether you actually get cancer or not. There are risks we can avoid and others that are harder to avoid. You could make the argument that testing for BRCA might cause some people unnecessary worry.  

I almost compare it with being married and deciding whether you want a friend to tell you if she knows that your husband is cheating or not. I bet people have different opinions, and either outcome isn't necessarily better than the other, since you are not at the point where you can knowingly prevent what is going to happen.

JoanQuilts

I agree that we can disagree Athena, but I'm still trying to understand your point of view!

Where I find a disconnect is t where you say "the only thing that matters is whether or not you actually get cancer."  A positive BRCA result (which is only "knowable" after undergoing genetic testing) will mean a VERY high chance of another breast or ovarian cancer.  While a prophylactic mastectomy or oopharectomy will not completely eliminate that risk, it can decrease it by something like 90+%, if I understand correctly.

I think that's important!