BRCA1 and BRCA2

maricath · New User Joined: 09 Jan 2005 Posts: 1

Hi,

My sister in law just told us that she tested positive for BOTH BRAC1 and BRAC2 mutations. Is this possible? All the info I have read on the net seems to say BRCA1 or BRCA2 mutations, but never really mentions both. Thanks for any info.

Minnlady13 · Posted: Sun Jan 09, 2005 5:41 pm Post subject: Re: BRCA1 and BRCA2

Hi, I don't know the answer to your question, but here is a great web site dedicated to genetic issues and breast cancer. I was started by Sue F., herself a breast cancer survivor. Good luck to your sister. Lauri

www.facingourrisk.org
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

sgishelly · Posted: Sun Jan 09, 2005 9:33 pm Post subject: Re: BRCA1 and BRCA2

Just curious...I'd like to know everyones opinions on genetic testing. I've been considering it but it affects so many more people than just myself....I don't know...
_________________
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

AlaskaAngel · Posted: Sun Jan 09, 2005 10:49 pm Post subject: Genetic testing

If my history still prints at the bottom of this message you can see why I might consider genetic testing. (There is also an aunt who died of ovarian cancer, not listed there.)

As part of the clinical trial I am in I was given genetic counseling. If you are pondering whether to get genetic testing, it wouldn't hurt to seek genetic counseling. It gives you a much clearer focus after considering your particular history.

After receiving counseling, if my history had been stronger or if I had children I would have wanted testing. As it is, my sister already knows she is at high risk and is doing everything possible to be careful for herself so I am not being tested. The last I heard, testing was running around $2500 and some insurance covers it some do not.
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

Minnlady13 · Posted: Sun Jan 09, 2005 11:22 pm Post subject: Re: BRCA1 and BRCA2

A tough question, Shelly. Since most breast cancers are NOT hereditary, I am not sure genetic testing should be considered routine. I have no family history, no risk factors, so for me, I don't think it would be an issue. However, if I were Alaska Angel, I might be considering it. I think I will invite my friend Sue who started FORCE to come and join in this discussion. I am sure she will have some interesting insights. Lauri
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

ShelleyC · New User Joined: 20 Dec 2004 Posts: 7

Hi all,
I have had the bloodwork for genetic testing but our Canadian labs move slowly and I can't expect results for up to a year. The good news is that the cost is covered under our Canadian medicare system.
My choice to be tested was a family choice and recommended by my doctor due to history. I have a daughter, 3 sisters, and a brother who have all agreed that they would prefer to know so they will be better able to protect themselves, the nine vials of blood I had drawn for the testing was for them.
Wishing you all the best in whatever decision you choose.

sgishelly · Posted: Mon Jan 10, 2005 12:18 pm Post subject: Re: BRCA1 and BRCA2

Here's the deal...

My mother was diagnosed with BC at age 52...before menopause. She has several cousins and 2 aunts that have had it. My grandmother on my dad's side also had it.

I have a sister and 2 daughters. My sister is currently doing everything she can to check for it because she is well aware of her risk. My daughters are the ones I'm concerned with. My oldest...18...was just put on birth control pills to help with cramps and that really scares me to death because both my mother's and my cancer are ER/PR+. Then I think about this...if I have the tests done and then, when they get old enough, they do not want to know the results and do not want to be tested...I will know the results and I'll have to deal with it...because ultimately it's their decision whether they would want to know or not. Sorry if I'm rambling...
_________________
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

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

Dear Friends,
Thanks to Lauri for the head's up about this great new forum! FORCE: Facing Our Risk of Cancer is a national nonprofit organization devoted to individuals and families affected by hereditary breast and ovarian cancer. Generally speaking, although most breast cancer is not hereditary, if there are certain red flags in the family, a hereditary component is more likely. At FORCE we [b]always[/b] recommend that women who are concerned about their hereditary risk see an expert in cancer genetics--that is a genetic counselor. They will not try to persuade you either way but will give you up-to-date information (cancer genetics is a rapidly changing area) and help you make an [b]informed[/b] decision. You can find a genetic counselor near you through the National Society of Genetic Counselors website at:

http://www.nsgc.org

I also encourage you to visit FORCE if you would like to learn more about hereditary breast and ovarian cancer. Particularly helpful is our brochure on genetic testing at:

http://www.facingourrisk.org/publications/brochure604.pdf

and our Resource guide with links to helpful and credible resources at:

http://www.facingourrisk.org/resources.php

And if you would like to talk with a community of women who have for the most part been through the genetic counseling and testing process then you might want to visit our message boards as well.

I hope this helps. I'm always available if anyone would like to talk with me about my experiences. I have a BRCA2 mutation (found out after diagnosis at age 33 with breast cancer) and also I'm founded and executive director of FORCE.

Warm regards,
Sue
[/url]

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

Sue and all,

Thanks for visiting. When talking about genetic testing, people need to be counselled by a geneticist. Genetic testing can have a lot of consequences not only for patients but also for their families. Insurance can also be a problem, since all your medical records are usually released to insurance companies, so if you are a BRCA1 or 2 carrier, some insurance companies may refuse to cover you.

There are criteria for who should be tested, and only a geneticist can go over these with you. Anyone can get a genetics consultation, but testing is a whole different story.

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

Minnlady13 · Posted: Mon Jan 10, 2005 11:51 pm Post subject: Re: BRCA1 and BRCA2

Thanks Sue for taking time to post. I sent several of our board members your email, so you may hear from them. I sent the email messages before I checked all the responses on the board. I should have known that you would find time to reach out and help those in need. Hugs and love, Lauri
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

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

Dear Leo,
With the very most respect, I'd like to speak to your comments about genetic discrimination. FORCE worked with the National Society of Genetic Counselors and consulted with the National Human Genome Research Institute, the Genetic Alliance, and Geneticists on our advisory board in developing our brochure on genetic discrimination which is available for review at:

http://www.facingourrisk.org/discrimination

The issue of discrimination is an important one, but it is important that people understand and put the risk for genetic discrimination in perspective. Several articles have been written about the perception of genetic discrimination in contrast to the reality. The risk for insurance discrimination has been overstated, with very few actual cases ever documented. Links to these articles can be found on the FORCE Reading Room page at:

http://www.facingourrisk.org/readingroom/readingroom.php#insure

The issue of health insurance discrimination is complex. For anyone with group insurance, there are federal HIPAA laws which state that you cannot be dropped or re-underwritten for any preexisting condition--including a genetic predisposition to disease. An insurance company cannot drop you if you test positive. Further if you have had creditable coverage with no lapse in insurance for more than 63 days, then you cannot be denied insurance if you qualify for a group insurance plan.

There are also state laws which vary from state to state.

Geneticists are experts in genetics, but so are the genetic counselors who work with them. Most geneticists at cancer centers work with trained genetic counselors. Generally speaking, consulting with a board-certified genetic counselor, a patient will get up-to-date and credible information on cancer genetics.

Sincerely,
Sue Friedman

mssue · Posted: Sat Mar 18, 2006 10:57 pm Post subject: Re: Genetic Testing

Hi Everyone!

I dug down deep for this one,but it's an interesting topic.I have an appointment set for Genetic Counseling on April 11th . During our phone consultation they basically wanted my families history ,at the time I couldn't think of how most of my relatives died ,how old they were or how old they were when they were diagnosed.Since then I have learned from other family members that all of my Mothers family died with cancer except one Brother he had a heart attack,there is only one Sister left on my Mothers side she had skin cancer years ago,I'm not sure if she is still alive or not - haven't heard from them since my Mother passed and that was 14 years ago,the were living in Michigan.Everyone one my Father side died with heart problems.I'm really not sure how the Insurance part is going to work but one Doctor told me that I need to be tested since my Mother died from Ovarian Cancer and my Sister has had cancer 2 times with Ovarian Cancer going on now,that if I tested positive that I needed to go ahead and have a hysterectomy.I know what my Sister is dealing with now ,Lord knows I don't want to go there,who does,right.Preventative measures, you would think the ins companies would be all over it,especially for high risk patience - I guess I'll have to wait for the rest of this story to be played out.
Any advice out there ,maybe some tidbits of info to take with me to the Counselor-appreciate your time and wisdom,thanks!

(hugs)
_________________
Sue
Age-44
DX-8/29/2003
Stage 1 - ER/PR-,HER2-NU+
Infilterating Ductal Carcinoma
Modified Radical Mastectomy/Left-side
4 Rounds of A/C-completed 1/2004

AlaskaAngel · Posted: Sun Mar 19, 2006 2:25 am Post subject: BRCA 1 BRCA 2

Hi mssue,

I don't stop by very often here and find it interesting that we both are here today (Kismet!?)

As I said in an earlier post, I received genetic counseling as part of a clinical trial (Early Detection of Ovarian Cancer trial). I've completed several years of the trial (yearly transvaginal ultrasounds plus quarterly CA-125's) and am waiting to find out if they want to continue doing the blood test.

I decided being in the trial was one way to protect myself. Remarkably no medical provider ever mentioned my genetic risk to me (that includes my local doctor, my surgeon, my oncologist, etc.) even though they all collected my family history. I found and enrolled in the clinical trial on my own.

In December I consulted with an oncologist who specializes in genetics, mainly to get better info for my younger sister, who is so far disease-free. In the end it was again recommended that I consider being tested for BRCA1 and BRCA2. I don't really have any reason not to be, and if I am positive I think it makes sense to have my ovaries removed.

But actually getting the test has so far been something of an annoyance. First, it took 3 weeks to receive the kit in Alaska. Then when the insurance preauthorization request was sent in by fax, apparently it wasn't received at all while I waited, thinking it was going through processing. When I called and learned it had never been received, it was faxed again and I confirmed it was received. Then my insurance company sent another form to fill out, which my doctor filled out and submitted. That is supposed to take around 10 days to process. (So far I have made and canceled numerous appointments for the actual blood draw.) I'm still waiting for confirmation of preauthorization and have rescheduled the draw for the end of the month to try to give them all yet MORE time to get it to happen. I hope you have better luck.

I'm HER2+++ and I read that the number of HER2+++'s who turn out to be BRCA1 positive is extremely low, so I called the consulting onc and asked if I should really be tested for that. She said yes, since there seem to be a few at least who do test positive.

I was also over 50 at dx, so that also makes it less likely that I would be positive, since most who are positive are younger than 45.

My aunt on my father's side died of ovarian cancer, which I keep forgetting to put in my signature. So that is my primary reason for being tested.

Keep in touch. If I can help in any way let me know.

AlaskaAngel
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

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

Dear Sue,
While you're waiting for your appointment (and after) I do encourage you to visit FORCE (and even post on the message boards). FORCE is devoted to hereditary breast and ovarian cancer and the majority of women who post there have had genetic counseling and/or testing. The website is at:

http://www.facingourrisk.org

I founded FORCE 7 years ago after being diagnosed with breast cancer and then later finding out it was hereditary and that I carry a BRCA 2 mutation. I post sporadically to this forum but know many of the women here from before I even started FORCE.

Today I celebrate my 43rd B-day, but in two days I celebrate an equally momentous milestone. 8 years ago I completed treatment for my breast cancer!

From one Sue to another, hang in there and know that you are not alone.

Warm regards,
Sue

AlaskaAngel · Posted: Sat Apr 22, 2006 1:48 pm Post subject: Earlier question answered

The question was asked earlier as to whether a person can be both BRCA1 and BRCA 2 positive. The answer is yes.

I too had this question, since both sides of my family have had either breast cancer or ovarian cancer. I had my test drawn this past week and will have the answer for me in a month.

AlaskaAngel
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

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