Gene Testing

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hi Everybody,
I was interested in getting information about gene testing. I know someone that just got her results back and she tested positive. She already had breast cancer, so she just went in to remove the ovaries.
If you have no family history that you know of...and I stress THAT YOU KNOW OF....should one get the gene testing.
I have three sisters and two young daughters. One of my sisters has had a biopsy which came back negative, but they still watch her every six months with mammo and ultrasound.
Has anybody here had the gene testing, and if so was it only because of a sister, mother, daughter...etc with either breast or ovarian? Has anybody had the test with no other relatives having had breast or ovarian?
If my sister should come back as cancer as some point, would I then be in a higher risk and have the testing????
Any feedback would be appreciated!
Thanks again everybody.
Kristen

Minnlady13 · Posted: Mon Feb 21, 2005 1:08 pm Post subject: gene testing

Hi, Kristen, welcome to the board. I am glad you brought your questions here. I have not had gene testing and don't intend to. But, here is a great web site with lots of information that will answer your questions. It is www.facingourrisk.org. Good luck to you. If the link does not work, let me know. Lauri
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

Muttsmom · Posted: Mon Feb 21, 2005 11:58 pm Post subject: Re: Gene Testing

Hi Kristen,
I'm not 100% sure about this, but I'm sure Leo can tell you, but when I was concerned about my neice since I was dx with BC young and if I'm not mistaken, I was told that she would need to be tested, not me since I know I had the gene since I was dx with BC. I don't think I would have any bearing on her since she's my brother's daughter and it's looked at as far as the maternal side. My mother is 82 and never had any kind of cancer, her mom, my grandmother died at 86, never any kind of cancer and my aunts on my mom's side died in their late 80s and never any cancer. I guess I was just lucky....geesh
I can understand your concern having sisters and a daughter and I'd ask your onco when you see him/her next or Leo. There are alot of sites out there, but you never know which ones are good for accurate and updated info. I was told by my onco, if I had to look something up, to use WebMD.

Good luck and I hope you get some answers soon to ease your mind.

Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

sgishelly · Posted: Tue Feb 22, 2005 3:13 am Post subject: Re: Gene Testing

OK...I've been going rounds about this topic as well. Here is what my surgeon and my onc. told me..... They both said that just because I have BC that doesn't mean that I have the BRCA1 or BRCA2 gene. There are more genes that can contribute to one's risk factor...these are just the ones that have been identified and can be tested for. And if I test negative, and my daughters and my sister test negative...that does not mean they won't get BC. And a positive test does not mean that they will get BC, it just increases their risk. They are already at increased risk simply because I had BC and at an early age (40) and also because my mom had BC at 52 (pre-menopausal). If I were to be tested and did have the gene I would want to consider whether to have my ovaries removed becasue this gene is also related to ovarian cancer. One more thing...this gene is more prevalent in women of eastern European descent....my onc. basically told me this test would be no good for certain ethnic groups. I'm not sure of where my ancestors came from, so that didn't really help me too much. I still haven't made a decision about it yet.

Hope this makes sense....it's 3:10am and I can't sleep due to anxiety ( I think ) about my chemo tomorrow. Shocked

It will be my 3rd AC treatment...only one more to go!!!
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hello everybody,
Hi Laurie thanks for the link, I will be sure to check it out. Also I am not new to the board, in fact have been here for a while and I thank god that I found it. Not only is there great advice from all you ladies, but having access to the doctors ears for answering questions is a huge bonus!

Shelly....yes your post makes perfect sense. My oncol said that I have about as much chance as having the gene or ovarian cancer that she does (hopefully her chances aren't good)..because of the no family history. However, my surgical oncol said because I have twin daughters (age 10) that I should be sure that they get checked out early in their life. This whole gene thing is very confusing. To tell you the truth, if I tested postive for the gene, I would not even have a second thought about going in and getting ride of the ovaries. Good luck on your last A/C chemo...I remember it all to well!!

Nancy...I beleive that the person with the breast or ovarian cancer is the one that needs to get the testing done. From what I know from my friend is that there is only one place that does the testing and it is in Calif..the cost is around 4,000 or so. If you test positive for the gene then my sisters or daughters could also be tested at the same lab but the cost is only about 300 or 400 dollars because the gene will already be isolated.

But what if you don't know if you have any family history, are you better off to get the gene testing done? As far as I know I really don't ahve any family history but if one of my sisters should get bc or ovarian, are you then considered to have a family history enough to get tested?

Thanks for all your posts and inputs everybody....
Kristen

sgishelly · Posted: Tue Feb 22, 2005 8:33 am Post subject: Re: Gene Testing

Kristen,

I've been awake all night so if I don't make sense please excuse me...

My onco. told me about another lab called Myriad. Here's their website info -- http://www.myriadtests.com/provider/contacta.htm
She said they would send out a test kit for you to take to your dr. and have the blood drawn and send back. They will also work with insurance companies to get approval.

I'm considering getting the testing done because my mother had breast cancer at 52 (before menopause) and she has several cousins that have had it as well. Then I got it at age 40. I have a younger sister and 2 daughters (11 and 18 ). The 18 year old has already been to the gyn and he told her that she would need to begin getting mammos at age 25 and that she needed to be diligent about the yearly check-ups. I really don't know what more she could do if she found out she had the gene.

Like you, if my test came back positive, I wouldn't hesitate about having my ovaries removed...but I'm older and have already had my children. It scares me to think of my daughters having to make that decision.

And that brings up another dilemma...
I know several people who have tested positive and have elected to go ahead with a bilateral mast even though there were no signs of BC. I'm sure this decreases their risk, but by how much??? I guess that's a question for the docs.

Well, I'm running on empty and I have to go and get ready for my appt...maybe I'll be able to sleep right through my chemo...
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

This is a very controversial topic, but I found one source that would merit one´s attention:
http://www.pamf.org/health/guidelines/geneticscreening.html

Basically, they recommend BRCA testing under the following circumstances:
[quote] * Breast cancer under age 45 and a relative with ovarian cancer
* Breast cancer in both breasts under age 50 and one relative with ovarian or breast cancer
* Ovarian cancer under age 50
* Ashkenazi Jewish heritage with breast cancer under age 45

Others would add the following characteristics as meriting the screening:

* Two sisters, each with breast cancer under age 40 or one with ovarian cancer under age 50
* Family history of two relatives with breast cancer and one with ovarian cancer
* Family history of breast or ovarian cancer under age 30
* Family history of three relatives with breast cancer under age 50
* Ashkenazi Jewish heritage with ovarian cancer, any age
* Family history of male breast cancer
[/quote]

So in the end, few women should really be screened, as the consequences of a positive test are enormous.

best regards,
Leo[/quote]
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

SueF · New User Joined: 10 Jan 2005 Posts: 9

Dear Friends,
I cannot stress enough the importance of talking with a genetics expert prior to deciding for or against genetic testing. Cancer genetics is an area of medicine which is rapidly evolving--and it's difficult for nonexperts--every physicians and oncologists to stay up-to-date on the informaiton. I strongly encourage anyone concerned about hereditary cancer or considering genetic testing to make an appointment with a genetic counselor. You can find a genetic counselor through the National Society of Genetic Counselors at

http://www.nsgc.org

even if you have decided not to have genetic testing, a genetic counselor can make sure that you can get the best follow-up care.

And FORCE is an organization devoted to hereditary breast and ovarian cancer--feel free to peruse our resource guide and message boards. Most of the women at our site have had genetic counseling and/or testing and are happy to share their experiences.

Hope this helps.
Warm regards,
Sue

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