Genetic Testing????

[Jackie]

I know this has been discussed in the past, the question of genetic testing. I was wondering if there were any of you who have genetic testing recently.??? There seems to be a significant family history of cancer.
1. father died of melanoma age 48
2. aunt on father's side died of bc mid fifties
3. father-in-law died of lymphoma 65
4. mother-in-law dx with bc (stage 1) 81
5. two of mother-in-law's sisters died of bc--late 50's, early 60's
6. my husband diagnosed with prostate cancer (very early stage)
7. I was dx with bc at 46 (stage 2)
8. husband's sister dx with bc 53 (just diagnosed--don't know the stage yet)
9. husband's brother dx with kidney cancer (early stage)

My concern is for my two children--son 22yrs. and daughter 18yrs.

[Becky]

I was genetic tested about a year ago as bc runs in our family. No mutations were found.

Becky

[AlaskaAngel]

Jackie, Your personal risk is based on your own cancer, your father's and your father's sister. Your husband's genetic background is much greater, but I do think that in terms of your children genetic counseling would be strongly recommended.

With a history like your husband's family, I would wonder if there is also possibly an environmental factor involved there.

Being counseled gives you knowledge and choices. Sometimes the choices aren't easy.


AlaskaAngel

[Mgarr]

Jackie,


I would highly recommend gentic counseling before you make any decisions.

I too have a significant history w/ brother at 23 diagnosed with non-hodgkins lymphoma, a cousin w/ same at 27. Another cousin (also 27) w/ ovarian and then I lost 2 aunts to bc one before she was 50 and the other at 55. All on the paternal side. It took time and counseling for me to come to the decision to get the genetic testing.

I did decide to test this month and I also fit a criteria to have my blood sent to a research data bank so hopefully it will help find some answers for our children & grandchildren.

[MCS]

I was tested last September. BRAC1 and BRAC2. I have a history of cancer in family and I had several benign cysts removed throught my life. I also had two daughters and I felt I owed them the information.


Get tested

XOXO

MCS ( maria)

[kk1]

Before you get genetic testing besure you understand the ramifications in regard to potential future discrimination.

You could face discrimination—in getting insurance coverage or employment—based on your genetic information. Advances in breast cancer genetic testing have out paced legal protections for those identified through such testing. Although basic legislation exists in the United States to protect most people from such discrimination, privacy remains a serious issue. Carelessness and leaks could reveal your test results to others. So far, however, no cases of discrimination related to genetic information are known to have occurred.

check out this site of many from a google search:
http://www.breastcancer.org/genetics_info_pros_cons.html

I myself did get tested,to my and the geneticts suprise they did not find the genes, but you should be aware of the downside if they find a something.

kk1

[Lani]

THOSE WHO ARE TRIPLE NEGATIVE (her2-er-pr-) ARE MUCH MORE LIKELY TO HAVE THE GENETIC DEFECTS THEY ARE TESTING FOR with BRCA1/2 (please correct me if I am wrong on this) than her2+ patients

They can also look for wrong numbers of parts of chromosomes and shortened chromosomes but that I understand is not what they are doing typically when someone goes for simple genetic testing for breast cancer.

I was also informed that those with a family history of women getting breast cancer LATE in their lives were unlikely to habe the BRCA1/2 defect.

Can anyone else chime in?

[AlaskaAngel]

BRCA1's are primariliy HR- whereas more BRCA2's are generally HR+. In addition, although everything I've read says it is much less common among HER2's than in the general bc population, the geneticist I happened to be counseled by said there is no relationship... (I tend to think he may be wrong.)

I was reluctant to be tested considering the expense of the testing, but when I raised the issue of the relative unlikelihood of testing positive since I am both HER2+++ and highly HR+, the onc I saw who specializes in genetics said "you can't take that to the bank; there are still some who are like you who are BRCA positive".

AlaskaAngel

[Lauriemn]

I also have a significant family history of cancer and had the genetic testing. I do not have the gene.

when I met with the genetic counselor she was much less concerned with older members of the family who had cancer (over 60) . I had a cousin who died of bc at 38 and an aunt who died of ovarian cancer at 39. I was diagnosed at 37. I also have a sister with uterine cancer who was diagnosed at 38. The counselor and I were both surprised that the test came back neg.

The counselor did remind me that they only test for 2 genes. There are, in all likelihood, other genes they don't know about. Testing negative , I think, did not change the risk for my sisters and my daughter. I still think that they are at high risk for breast and ovarian cancer.

Laurie

[Sherry in WV]

I asked my Onc about genetic testing for my daughter. My sister was stage 2 I am stage iv. He informed me that my daughter coulld be singled out not to get life insurance, health insurance, credit, even a job and this could carry on to her children and if connected, could even affect our son and his children.
Unfair, oh yeah, but believe me dispite HIFA laws, things like this are being done.
So please be careful about genetic testing and weigh the pros and cons.
Peace
Sherry

[Lauriemn]

Another good point the genetic counselor made was she asked me why I was having the genetic test done. I had it because I was contemplating having a bi-lateral mastectomy and said it would help me make my decision. she advised that if you are not going to do anything with the results, it may not be worth finding out.

Obviously, your daughter will have to be vigilant in bse and having mammograms, and possibly ultrasounds, whether you have the gene or not, simply because her mother has bc.

If you are not having the test to make decisions about treatment, etc., it may not be worth it to have it done.

Laurie

[Jackie]

Thank you all for your words of wisdom. I will talk to my onc on the 22nd to see what is his take on genetic testing. My biggest concern is my children, but with the privacy concerns, ins., etc. I don't know if it is worth it.

[R.B.]

There is a book called Breakthrough by Kevin Davies that looks at a lot of the issues of to test or not to test. It was written in 1995 but is still a very interestng read.

At a pragmatic level from the statistics you cite you are already aware of the issues.

Is a test, if positive, telling you you have a certain risk level going to change anything.

There are no definative preventatives except lifestyle - diet exercise and consideration of any possible common environmental factors if you are close knit or live in the same geographical location etc.

The issues of requirement to disclose, and potential impact as insurance becomes more selective and expensive in the future ( my guess) are food for thought, and may impact on your childrens ability to obtain insurance.

On my hobby horse of balancing the omega threes and sixes etc., the risk reductions offered by this and other dietary changes for me are too important to ignore. One trial showed a 69% lower risk of lumps excised being invasive in the third of the group with the highest levels of DHA in breast tissue fat.

I don't envy you your choices,

RB