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Topic: Age and BRCA testing

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Dec 6, 2007 01:11AM, edited Dec 6, 2007 01:13AM by corepat

corepat wrote:

My grandmother died of breast and ovarian cancer. Two of my aunts have/had breast cancer. One died and one is currently terminal. My sister was recently dx'd with DCIS and just had a lumpectomy last week.

I'm 46 and I just got a call today that my mammogram has an abnormality. I have an area of parenmchymal asymmetry. They also noted that my breast is heterogeneously dense, which I'm assuming makes it difficult to get a clear xray of the area. I'm pre-menopausal.

My grandmother was probably in her 60's when she got breast cancer. That was over 30 years ago and her lousy doctor didn't bother treating her. Her daughter died in her 60's. Her other daughter is late 70's and I don't know how long she had cancer before it was diagnosed a few years ago. I just remembered that this aunt recalled that her aunt (my grandmother's sister) also had breast cancer.

My sister who just found out she has DCIS is 53. She went through menopause a few years ago. Her oncologist said that they usually test women for the BRCA genes when they are are younger than 50. But if her insurance company would cover it, they were considering testing her. Given the age of the women with breast cancer in our family, does it make sense for us to test for BRCA?

I don't know if I have breast cancer at this point, but if I do, then we really do have a cluster in our family. I think we're mostly concerned about the potential of ovarian cancer.

Thanks for any suggestions about testing.

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Posts 1 - 16 (16 total)

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Dec 6, 2007 02:56AM LisaSDCA wrote:

I would do it, and I would bet the insurance would cover it, considering the number of both first and second (and third) degree relatives you have in your BC history. It may not be BRCA-1 or 2, but there is definitely something going on there.

Good luck!

Lisa

BRCA-1+

Stage IV mets to brain 11/2008 BRCA-1 positive

Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Dec 6, 2007 09:41AM Msklapkin wrote:

I would definitely test.  Knowledge is power.  I decided to have a double mastectomy (1 side was prophylactic) and an oopherectomy when I tested BRCA2+

My sister tested negative but was ready to have surgery as well.  It is a simple bloodtest.

If you go to the website-facingourrisk.org you will find many women who were tested at all ages.

I am not sure why your sister's onc brought up age-since BC or OC can show up at any age.

Good Luck

Dx 8/8/2005, IDC, Stage IIb, Grade 2, 1/8 nodes, ER-/PR-, HER2-
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Dec 6, 2007 10:57AM corepat wrote:

My sister has an appointment with her oncologist this morning and she's going to discuss the testing with them. They already offered to have her speak with a genetic counselor and said I was welcome to come and discuss our family history.

The oncologist said that the BRCA genes are more a concern in younger women. It may well be that we have a genetic predisposition to breast and ovarian cancer, but it might also be a different gene. If I end up having cancer too, then we may be able to get the insurance to cover it. Guess we'll see. The doctor said that the insurance may not cover it at my sister's age. I'm still within the guidelines, since I'm under 50.

As strange as it seems, clusters of illness can happen without any cause -- genetic or otherwise. But, it really does seem that we have a family problem here. This is our paternal side. They are healthy otherwise. My mother's family are riddled with illnesses of various kinds, but not breast cancer. Looks like we won the genetic jackpot...


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Dec 6, 2007 11:21AM corepat wrote:

I have a question, if you all would help me with some conjecture... I'm trying to make some guesses of when my family members might have initially gotten BC.

If a woman gets DCIS and isn't aware of it and/or doesn't treat it, how long do you think it would take to turn into metastatic cancer? Here's what I know about my grandmother. When I was a child and she was 72 years old, she was concerned about her breast. Her nipple was inverted and obviously something was pulling it in and she had a discharge. This was in the 1970's. Her GP, who was an old man at the time and not modern in any way, told her that it was likely BC, but she was too old to bother treating it. It took another 10 years to kill her (no treatment of any kind) and her death certificate has ovarian cancer listed as cause of death.

I'm wondering if she initially had DCIS, how long it would take to get to the point of invasive cancer, pulling her nipple in and causing discharge.

Her daughter (my aunt) was in her 60's when she died. I didn't know her well enough to know if she bothered with routine mammograms or anything. I think that she was dx'd at a late stage with her BC. She had bone cancer when she died.

The other aunt who is terminal now, is in her late 70's. I have no idea when she was dx'd or what stage, but she's not on top of things and I can't imagine her doing her routine screenings and taking any part in her own health care. She knows very little about her cancer and just knows that the doctor said she has a year or so left.

My sister has DCIS. She's 53 and she hadn't had a mammogram in several years. So, we don't know how long it's been since it started. But, I'd guess around 50. I'm wondering if our aunts and grandmother started with DCIS at a similar age and since they didn't know, how long it would take to reach the point of Stage IV cancer?

So... just trying to put our family BC history together and trying to figure out what the true age of onset really is.

Sorry for my rambling...

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Dec 6, 2007 01:22PM Msklapkin wrote:

The oncologist said that the BRCA genes are more a concern in younger women

Corepat- I do not understand this comment at all.  does that mean if I am 52 and have the BRCA mutation I do not have to worry- Of course not!  Anyone having the BRCA mutation needs to worry about OC and BC no matter what age!!  At 52 my onc strongly suggested I have an oopherectomy.

I think what this means is if women are tested young and are positive, they can have more surveillance or make decisions about their breasts and ovaries earlier-for example- start Mammograms at 30 instead of 40.

BC and OC have no age limitations- I know women in their 20's and women in their 80's  and everyone in between.  Each is a valuable life and should be monitored and treated to live a long happy life.  Just because we are over 50 we should not ignore the tools we have to save us.

I think your questions are best answered by a doctor and I strongly suggest you see a genetic councellor.  It may be BRCA or a different mutation due to the cluster.  Only by more testing and more info can doctors do their research.

Please know each case is individual-just because your Grandmother got it at 53 does not mean if you pass 53 you are safe.  Please test yourself and since you are at high risk, you should have additional testing- MRI, IU ultrasound, etc.  I wish you luck with whatever they find on your mammogram.

Please understand I am a 2+ year survivor with the BRCA2 mutation.  I wish I had know and could have found my tumor earlier- before it spread to my sentinal node.

Good luck

susan

Dx 8/8/2005, IDC, Stage IIb, Grade 2, 1/8 nodes, ER-/PR-, HER2-
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Dec 6, 2007 02:14PM corepat wrote:

Thanks, Susan.

I just spoke to my sister and we're having the initial meeting on genetic counseling on Wed.. I got some information wrong from my sister. The NP told her that they normally don't BCRA test after 50. But, my sister's oncologist wants her to test. She's looking into insurance coverage now.

I should know more about my own situation on Tuesday when I go back in for my spot compression views. I really do want to have the information about my BCRA status if I can get my insurance to cover it.

I guess I'll cross each bridge as we get to it. I was hoping my sister would get the BCRA testing before making decisions about treatment. She's set on the lumpectomy/radiation path now.

Thanks for your help and for sharing the information and your own story. It gives me hope to see so many survivors who are doing well.

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Dec 6, 2007 04:10PM, edited Dec 6, 2007 04:11PM by veggievet

Hi Pat,

I'd be happy to talk with you about genetic testing and age of onset of breast cancer.  I'm an advocate for the BRCA community and have been involved in advocacy for this community for 9 years.  Please feel free to e-mail me at:  sueanddan@att.net

Also, you might want to check out the website for FORCE: Facing Our Risk of Cancer Empowered at: http://www.facingourrisk.org, and organization that is devoted to the issue of hereditary cancer.

Oncologists are great at cancer treatment but very few have training in genetics or knowledge about the most up-to-date information.  Just like oncology is rapidly evolving with new research coming out all the time, the same goes for cancer genetics.  Once you meet with the genetic counselor I think you will understand the issues much better. They are the experts in hereditary cancer.

I hope this helps.  Please e-mail me.

Warm regards,

Sue

P.S. I carry a BRCA 2 mutation and I'm an 11-year breast cancer survivor

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Dec 6, 2007 08:17PM corepat wrote:

I know an American woman in Britain who has had BC and nearly every female member of her family has had it. She goes to Royal Mardsen, the big cancer hospital over there and she's been advised against testing. The reason her oncologist gave was that it can ruin your life with mortgages, jobs, etc. I would assume that info would be kept confidential. She gets checked very often (had lumpectomy), but I don't see how BC checks will help with risk of ovarian cancer if she carries the BRCA genes.

I'd love to get some info on age and BRCA. I feel like I'm waiting for the other shoe to drop with BC myself and with my sisters. I'd feel better having more info to help determine more about our risk.

Thanks for your offer. I've been to the FORCE website a bit, but I'll check it out more thoroughly. I'll email you later on tonight.

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Dec 7, 2007 02:40AM hi5 wrote:

I am the third of 4 sis to get bc...the first passed away at 33.  The second got the testing done after I was dx'ed (  at the time we found out she had bc the genetic counsellors wouldn't do a test on me..wanted a survivor)...anyways she probably saved a lot of lives since having the genetic testing done. We have the brca1 gene and so do all our daughters and the sister who passed away her daughters have it too.  so far I have had ooph and hyster and so has my daughter. My nieces have had prophylactic masts etc etc.  I am sure many more bc would have shown up so I am grateful for the test.

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Dec 7, 2007 09:18AM chemomom wrote:

I am 32 and am the only one in my family to have had breast cancer.  Since I am so young, though I was able to get the BRCA testing covered by insurance.  My ins co sent me their criteria for BRCA coverage and while a dx at a young age was one reason they covered the tests, they also covered testing for people that had immediate family members with a history of breast or ovarian cancer.

I would suggest you call your insurance company and ask them to provide their BRCA coverage policy.  In your situation, I would think that it is more likely the sheer number of relatives in your family with a history of breast cancer that would qualify you for coverage, rather than any age considerations. 

Best of luck to you and your family. 

Dx 7/16/2007, IDC, 6cm+, Stage IIb, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Dec 7, 2007 09:44AM Msklapkin wrote:

I had my BRCA test at age 50, had already been diagnosed with BC and my insurance paid.  I recently bought a house and leased a car- I had no additional charges due to my Brca status.  maybe UK is different

good luck

Susan

Dx 8/8/2005, IDC, Stage IIb, Grade 2, 1/8 nodes, ER-/PR-, HER2-
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Dec 7, 2007 12:36PM, edited Dec 7, 2007 12:41PM by corepat

I thought the Brits had medical privacy laws. But, the oncologists are recommending against the test based on privacy concerns. Another friend just told me that she was advised against taking the test for these reasons. She and her sister both have BC.

I'm not so sure our medical info is any more private here than there. But I really don't see how banks and employers could get this info about us. It would make us uninsurable for private health insurance, but so does BC. In the case of a woman who's never had BC, but tested positive and had prophylactic surgery, it would make sense that she not be declined by private insurance. But, I'm guessing that they would decline a person with these circumstances. I was in perfect health and was declined health insurance because I'd had infertility treatment in my late 30's. I'd had a normal pregnancy with no complications and was in my 40's with no plans for continuing treatment. I was still declined even without maternity insurance coverage.

So, the only issue I can see due to testing positive is the possibility of not getting private health insurance. I can't imagine it would impact us in any other way.

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Dec 7, 2007 01:21PM TerryNY wrote:

I have been lurking here for a few days as I'm going through the genetics testing soon. 

I'd like to share some thoughts that my dr shared with me and my interpretation of the information.

The statement that BRCA genes are more of a concern in younger women needs more explanation.   It isn't the fact that that type of cancer affects only younger women, it's the fact that the younger you are at diagnosis, the odds are higher that you potentially have the BRCA 1 or 2 mutation.  We all know BC affects women at all ages, the very young and the very old.  However, if you have first degree relatives who were dx in their 20s, 30s and 40s, it's a much higher likelihood that the genetics come into play. 

As you age, beyond 50 and over, then the statistical numbers are more the 1 in 8 lifetime chance...this is especially true if family members are getting dx in their 70s and 80s.

I have three relatives with breast cancer, two in their 30s, one in mid 40s and me at 47.   My grandmother had it in her late 60s but it wasn't a factor to include in the testing.  
Because of our youthful ages (yeah, who would've thought at age 47 I'd be called 'young'  ha ha ha....), the genetic test is being suggested for me.  

As for the privacy issue, Myriad is the only company in the US that does this testing.  You can go to their web site for reassurance on this.  It is illegal in the US to be discriminated against for genetic testing results and as of this date, there is no legal documented case of any discrimination occurring.  The results are shared with your dr only, not the insurance company.  You choose who can see the results. 

Also, there is a new component of the testing just initiated this year called BART.  I can't remember what the acronym stands for but it's a more 'indepth' test.   If you test negative after the comprehensive BRCA 1 or 2, they can conduct the BART using the same blood sample and detect further mutations.  They are finding out that some women who've tested negative for the BRCA 1 or 2 are positive after the BART.  But this is definitely more than my chemo brain can handle to scientifically explain all the ramifications and methods used.

If your family history concerns you at all, I would definitely talk to your doctor about further testing.

Terry

Dx 2/13/2007, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR+, HER2-
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Dec 10, 2007 04:16PM msannie57 wrote:

Terry, Thanks for that posting!  There is so much misunderstanding about these genetic issues and quite frankly most physicians, including oncologists, don't really know that much about it. While I am unhappy with Myriad for marketing directly to the public, they do have a good website which explains these issues clearly. 

Ann

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Dec 14, 2007 08:49PM angelaw wrote:

Hi: I am brca2 and was told that braca2's cancers are found 48ish and up while brca1s are earlier.  TAKE THE TEST.

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Dec 17, 2007 11:22PM veggievet wrote:

Dear Friends,

Actually there are loopholes to the laws that protect against genetic discrimination (which is why the Coalition for Genetic Fairness is trying to pass the federal Genetic Information Nondiscrimination Act).  The topic of insurance discrimination is a complex topic but I'd be happy to talk off the boards with anyone interested in more information.  You can e-mail me at: sueanddan@att.net

FORCE and the National Society of Genetic Counselors authored the only brochure on genetic information, privacy and discrimination which can be viewed and ordered off the FORCE website at:

http://www.facingourrisk.org/publications/brochures.html?PHPSESSID=c585cf0c9baaf2149eae9d40ff6bd5f0

The BART Panel stands for :

BracAnalysis (brand-name of the BRCA test) Rearrangement Test.  Anyone with a personal or family history of breast and/or ovarian cancer whose family has tested BRCA negative before August 2006 but still has a strong family history may still be BRCA positive and may qualify for the BART testing.  You can read an article about testing negative and the BART panel in the FORCE archived newsletter at:

http://www.facingourrisk.org/newsletter/2006fall/brca_testing.html

Genetic testing after August 2006 includes the BART panel in it. 

I usually tell people if you haven't seen your genetic counselor in a year or more it's probably a good idea to check in with them to see if there is anything new.

Warm regards,

Sue