Why did I not get BRCA test?

GramE

I finally got an answer, 3 1/2 years after dx, why I did not get BRCA test.   I was diagnosed over the age of 50.    Not sure if this means anything to anyone else, but just passing along the info.

I had initially thought it was because I am ER and PR negative.     BTW, by the way, onco says insurance covers the test in USA.     

comingtoterms

Hello GramE, I was diagnosed in Jan. 2009, at the age of 48. By the time I got through surgery and chemo, in July, my insurance had changed the age of eligibility for genetic testing from 45 to 50. Boy, this "50" number is infuriating. I don't know who decided it was a "magic" number, but it certainly wasn't for me. I am still menstruating at almost 52. I guess the insurance company has determined that every 50 year old breast cancer survivor is the same. Tammy

SelenaWolf

BRCA tests are only given if your family history shows a definite cluster/pattern of family members developing breast- and/or ovarian cancers prior to the age of 50, particularly in their 30's.  In my case, I was able to trace back my family tree to my great-grandparents on both sides for the genetic counsellor; although cancer appeared sporadically throughout each generation, the only other family member that developed breast cancer other than myself was my mother.  What it did reveal was that I am, probably, much more likely to drop-dead of a sudden heart attack than die of cancer!!!! 

BRCA testing is very expensive and, if there is no reason to think you are at high-risk because of a family "cluster", then it is not offered.

leaf

Here are the USPTF guidelines for BRCA testing.  http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

If you have an unusual family history, such as few persons/females in a generation, then you may have a different situation.    I got genetic counseling, not testing, because I had a paternal grandmother who had bc with bilateral mastectomies (this was in the early 1950s-before the widespread use of chemos, and they often did bilateral mastectomies for unilateral bc at that time), who had no daughters, and several maternal aunts who had bc. (I have classic LCIS diagnosed at >50 years old, but before menopause.)  I didn't know at the time but all my relatives were over the age of 50 when they were  diagnosed. The genetics counselor said I had about the same risk for a BRCA mutation as an *average* Ashkenazi Jewish woman, which was a weak risk, about 2-5%.  I opted not to get tested; I'd have to pay out-of-pocket, and my risk was quite low.

SelenaWolf

Although I got the counselling (knowledge is power and information never hurts anyone), I also opted not to be tested.  There just wasn't a clear reason to be once I looked at my family history.  If I had had children - especially daughters - I may have felt differently because the answer may have affected how THEY should monitor their breast health.  But I have no children and my siblings have all had boys.

A radiologist friend of mine said that if we all live long enough, we'll all develop cancer.  It is, unfortunately, part of the human experience.  Although there are many risk factors for developing cancer, AGE is the biggest one.  We are more susceptible, the older we get.

vivirasselena

AETNA denied mine because my aunt (ovarian) and cousin(breast) were not close enough relatives.  yeah, go figure.

pupmom

GramE, I was 62 at dx. Maybe my insurance is more generous with the test than yours. I also had a sister who got bc at 35 and a maternal grandmother who got it in her 70's. Those factors probably helped tip the scale also. Fortunately, mainly for my children's sakes, I was negative.

GramE

My mother had BC at age 45 - and 4 of her first cousins also had it before age 50.   I was dx at age 62 and never given a reason by either surgeon or onco until the other day.   

pupmom

GramE, sounds like you should have qualified. After all it does mean that BRCA+ are at very high risk for more bc and ovarian cancer. If I had been positive I wouold have had a double mast and ooph.

LISAMG

GramE, I strongly suggest u seek genetic counseling with your family history. Just because u developed BC at a later age, does not mean its not hereditary. BRCA2 related cancers sometimes develop at a later age onset and have no boundaries. Keep asking questions, until you get the answers u want!!

1openheart

I had both grandmothers with bc.  One in her 30's and one in her 50's.  Not alot of other women in my family to rule out a genetic propensity, so I was approved for the test.  I was neg for both BRAC 1 and 2 and BART.  Oh yea...I was over 50 at my dx.

suemed8749

I was dx in Jan. of 2008, but was only BRCA tested in December. My father's sister had bc (still alive and doing well in her 80's), and I just learned this summer that each of his 3 brothers had one daughter with bc. My onc's PA ordered the test when she heard that, and BC/BS did not approve at first, but my genetic counselor got it pushed through. She said that multi-focal disease was a big risk factor (I had 2 tumors.) I asked her about BRCA and hormone/ Her2 status, and she said that it didn't matter - the type was not related to BRCA. I was negative - good news for my 3 kids and niece.

Rachel1

My onc. insisted that I get tested even though I was over 50 at dx. He argued that the cancer was growing while in my 40's and insurance paid.  I have no family history of breast or ovarian cancer and guess what? Yup, I turned out BRCA2+ Interestingly, my 2nd opinion onc at a major teaching hospital said because of my age, she wouldn't recommend that I have the BRCA testing.  I'm so glad that I didn't listen to her.  I've now had a bilat. mx and hysterectomy.

Rachel

IDC 4.5, grade 3, +nodes, ER/PR+, BRCA2+ 

exbrnxgrl

I have Kaiser Permanente. If your mo, via information gathered orally, thinks you might have the BRCA gene you take an on line class then fill in an elaborate family history. They evaluate this and then you have a phone interview with a genetic counselor who determines if you qualify for testing. Ethnicity is a factor too as Ashkenazi Jews are at greater risk. The online class was interesting and very informative but a bit tedious.

Caryn

Anonymous

Wow...you all have given me a lot to think about regarding whether to push back on my initial insurance denial.  Thank you for so generously sharing your experiences and knowledge.

exbrnxgrl

Ysa,

I'm no expert on BRCA testing but I think there is a fairly clear profile of who needs to have it done. Despite what it seems, only a small % of women test positive for the gene. If it's any comfort, I spent over an hour on the phone with my parents to gather family medical history. They simply had to answer yes, no or don't know to each question. Here's how it went:

Me: What about Uncle Max?

Mom: Uncle Mechal? Well, no, he didn't have cancer but oy, did he have a cough! Maybe it was cancer. Maybe you should write that down.

Me: Mom, it's yes, no or don't know.

Dad: Your cousin Jeanie, she had cancer, didn't she?

Me: Dad, I'm not asking about mom's cousins, just her aunts and uncles.

Mom: What about Shprintze? Who knows what she died from? who knows when she born? They didn't keep such good records. Oh but she made the best rugelach!



It was actually kind of funny, my parents are always unintentionally funny but I was exhausted by the time we were done.

Caryn

Anonymous

Caryn - thank you for the giggles.  My husband is Jewish and I'm loving (and relating to) your family conversation!  My mom had bc at 59 and later developed colon (rare) and lung mets.  She was an only child from a "we don't talk about such things" family and, after my grandma's passing many years ago, there's been really no contact with that side of the family and very little knowledge of their hx (not to mention that we found out quite accidentally upon my grandmother's passing that my mom's dad really wasn't her dad...and we have NO idea about that hx).  She and my biological dad divorced when I was 3 so I have absolutely no hx from his side.  (Sheesh.. my family could've been their own soap opera.) 

For me, the solution was just to decide on a BMX rather than push the issue with the insurance company since I couldn't either prove or disprove any further hx.  What got my attention was that both my BS told me it was likely I had developed the cancer 9-10 years ago, which would have put me in my mid-40's.  My reason for thinking about appealing has to do more with my younger sister's peace of mind.  Still don't know what I'll do but it is an interesting, thoughtful discussion.

Thanks, again, for being so open and for the giggles.

Blessings2011

My mom was dx with BC at the age of 67, and was NED until she passed at age 87 of Parkinson's-related complications.

I had no other relatives I could think of who had BC.

I was dx at age 61...I had no kids, so my MO said that BRCA testing was not an issue for me.

I didn't have the Oncotype test either, come to think of it.... Guess all my diagnostic info, surgical intervention, and final path report made that unnecessary, too...

SelenaWolf

And don't forget that , even if you test positive for the mutation, it does not mean that you WILL get cancer.  It's not an automatic death sentence; it just means that you are high risk.  Which, if you've already had breast cancer, you're at high risk for (again) anyway.  Many women with the mutation NEVER develop breast/ovarian cancers.

I've read some articles recently that the Oncotype test is not always reliable and some doctors/oncologists are shying away from using it to determine treatment.  Moreover, because of this lack of reliability, many insurance companies are beginning to drop coverage for it.

QuinnCat

I was 58 when Dx'd BRCA. The first one in the family. Mother and two aunts Dx'd with BC at 52 years..no other known BRCA family history though lots of cancer. After genetic counseling my odds were 7% for BRCA.



My insurance company pamphlet said "must have BC to be covered for test"-- but prior authorization required. If they had other guidelines for approving, they don't state them. As good as this sounds, as the first one in the family tested, I find the requirement of having to have cancer to be compensated even a bit much. I guess every family has a sacrificial lamb?

SelenaWolf

Yikes!  I thought the whole purpose of the test was to determine risk.  I mean, if you've already had breast cancer, you KNOW you're at risk!  I guess you're right, that - in the end - it's more for other family members...

hrf

In Ontario all Jewish Ashkenazi women can get the BRCA test because research has proven many are positive even without family history. Also it is not true that Many women with the mutation NEVER develop breast/ovarian cancers     It is the opposite .... the risk is up to 85%. However, in my family everyone with the BRCA (i.e. all our mothers, aunts, cousins etc.) got bc ..... some when they were even over 60. Furthermore, surveillance isn't effective either as many of you have already learned that it is not unusual for mammograms and u/s to miss tumors.....I have learned the hard way. And I've had TN as well as ES+ breast cancers ..... many doctors are not BRCA savvy and that is why they are giving what I would call simplistic advice. I got my results back in just about 3 weeks - it doesn't have to take months. And men can carry the mutation and pass it on to their sons and daughters and they are at risk of other cancers as well....Being BRCA+ is a BIG deal.

AnnNYC

SelenaWolf, you mentioned that your siblings only have sons.  The BRCA mutations can signal risk for men, too -- especially for development of breast cancer, prostate cancer and melanoma (but also some other cancers with BRCA2+) -- even though BRCA+ men have a lower risk compared to BRCA+ women, they have a higher risk compared to men in general.

http://inthefamily.kartemquin.com/content/men-and-brca

Beesie

Actually, testing someone in the family who has cancer makes sense, because the odds to start off with are higher than this individual might carry a BRCA mutation.  So if you are in a family where several members have had breast, ovarian or prostate cancer (remember - this affects men too), then testing someone who's had cancer is always preferred to testing someone else in the family who has not been diagnosed with cancer (yet, anyway). 

If someone in the family has one of these types of cancer and they are tested, a negative test result means that you don't need to be tested. But if they test positive, then you should be tested - and at that point they know the specific mutation that they are looking for so the test is quicker and cheaper.  For the person who tests positive, because the BRCA mutations are related to more than just breast cancer, there are implications in terms of other cancer risks and other preventative or precautionary actions can be taken.

You have to consider both sides of the family.  There are several cases of BC on one side of my family and several cases of prostate cancer on the other side of the family.  In reviewing all the family history, my genetic counsellor thought that I might be higher risk from the prostate cancer side.  Turns out I was negative.  What that means is that I don't have any of the currently known genetic mutations - but there are new mutations discovered all the time so it's still possible that there may be a genetic connection, just one that science hasn't discovered yet.  If you have an extensive family history of cancer, you can only feel really safe with a negative result if one of your parents or siblings has had a positive result, in other words, if you know that there is a known mutation in the family.  Then, with a negative result, you can feel comfortable that you didn't inherit it.  

Not much is ever clear simple!  

learnin

GramE - so are you getting tested now? Your family history sure sounds suspicious.



Selena - I was the first identified BRCA in my family. Since then, many relatives have been tested, and many are positive. By the time I was found to have the mutation, I had already had BMX. So I just had to deal with the ovaries. The bigger benefit was for relatives. Some have chosen preventative surgery. Some are in high risk screening programs with breast MRI. And recently my young cousin died - by the time she was tested, it was too late. In the work up preparing for her preventative mastectomy she was found to have metastatic disease.



IMHO - if you were diagnosed young, or family history (either side) is suspicious, or you are Ashkenazi Jewish heritage - at least talk to a genetic counsellor and seriously consider screening. If not for yourself, then for your relatives.

learnin

Also - AnnH - wasn't the movie "I'm the family" exceptional? For anyone who hasn't seen it, available on Amazon.com

http://www.amazon.com/gp/aw/d/B001C0JRLU/ref=mp_s_a_1?qid=1331676539&sr=8-1

LouLou40

I was dx at 40, no risk factors for BC, no family history on my mother side, my farther was adopted so no history available.

My Onc did not recommend testing as I was I had no family history of cancer on my mother side, he felt that I was at low risk of testing positive so he didn't refer me for testing, should I ask for a referral anyway?

learnin

Loulou - hmm - the unknown is your fathers side.



Your onc is probably right that it would most likely be negative - BUT - many examples on these boards of surprises. I agree that knowledge is power. Are there any potential downsides to testing for you? Perhaps start with a referral to a genetic counsellor to at least get all the info?

GramE

To answer learnin - No,I am not being tested.    I guess the advantage would be to compare my son, his daughter and my grand baby to be (due in September).   

hrf

The most important reason I had for testing was to protect my children. Unfortunately, I have passed it on to at least one of them. The others haven't been tested.....yet. My granddaughter is at severe risk now.

SelenaWolf

The only other breast cancer patient in my family - in four generations on BOTH sides - was my mother.  No cases of ovarian- or prostate cancers; no cases of stomach- or bowel cancer; HENCE, I did not have the test.   There was no evidence whatsoever that I had inherited a genetic mutation. 

 And I stand by my argument that not all women with the genetic mutation develop breast/ovarian/other cancers....

"...According to estimates of lifetime risk, about 12.0 percent of women (120 out of 1,000) in the general population will develop breast cancer sometime during their lives compared with about 60 percent of women (600 out of 1,000) who have inherited a harmful mutation in BRCA1 or BRCA2 (4, 5). In other words, a woman who has inherited a harmful mutation in BRCA1 or BRCA2 is about five times more likely to develop breast cancer than a woman who does not have such a mutation..."

Yes, I agree, your RISK is calculated as much higher - absolutely - but the percentages, also (using the above quote) mean that 40% of women in the high risk group DO NOT develop one of these cancers.  That can be a significant number of "positive" women who don't.  And, we all know on these boards, that a prophylactic bilateral mastectomy/oopherectomy does not eliminate that risk 100% whether you are tested postive or negative.  There will ALWAYS be risk of developing cancer.

I cannot live my life petrified of a possibility.  Certainly, now that I have had breast cancer, I will be monitoring my health with a bit more care than I used to, paying attention to my overal nutritional and activity level.  But I am not going to obsess about a number.  I am not going to play "what if" for the rest of my life; what a waste that would be!   I would miss out on the "right now".

Cancer is the scourge of being human.  I would love to see a cure- or a prevention in my lifetime, but it is not like it is something like smallpox or polio, which were based on infections/viruses.  It is something that happens deep within our cells and - so far - cannot be controlled for very long.  If you have human tissue, you are at risk for cancer.  Sure, some people may seem that they are at less risk than other based on a whole bunch of arbitrary factors, but we all know on these boards that people without a family history of breast/ovarian cancers still get them, just as people with strong family histories do not.  It cannot be predicted with any degree of certainty.

I understand the fear of cancer - believe me I do - and I am not minimalising the fear of being "high risk".  I'm just saying that - sometimes - the fear of something is more paralysing than the reality.  I have already had cancer - I will never feel "safe".  Just by developing cancer, I am in a "high risk" group.  Cancer cannot be cured- or prevented, or accurately predicted and a positive BRCA test only suggests a higher risk than normal when compared with women who have a negative test.  A negative test does not mean I won't develop cancer; it just means that I will develop cancer at the same rate as other people who are "negative.

I am more than my cancer.  I am more than just IDC Stage 2, Grade 2, ER/PR+, HER2-.  I am more than BRCA1 or BRCA2 positive or negative.  I am more than just a 10% risk of recurrence.  (Yes, I've been given all the statistics, ad infinitum).  I cannot live the rest of my life afraid- and obsessing on these numbers; going over them again- and again, and wondering how I can bring them down more.  I am not a math problem.  Nor will I pick away at numbers like a scab, making it bleed so often, that I forget to live my life.

I am Selena Wolf; devoted wife, practising witch, tree-hugger, historian and journalist.  I hate spiders and hypocrits, and love cats, horses, dogs and anything furry.  I have a collection of really great shoes!   I'm nearly 6' tall in 3" heels and love the feeling being tall gives me!!  In the last year, I've taught myself to knit, perfected my calligraphy, learned how to cook French, and brushed up on my university Russian.  Cancer has only been a small part of my life... and that is the way it will remain.

Perhaps I don't belong on these boards...