DCIS and the genetic test

crystalphm

Did anyone get the genetic testing after being diagnosed with pure DCIS?

I have had a double mastectomy, no radiation or chemo or taxmoxifen needed...no further treatment.

But now my sisters doctor wants to know if it was genetic.

We have never had anyone with breast cancer before, so the test was never ordered for me.

has anyone had the test? Is DCIS considered to be genetic also? Does insurance pay for it?

Thanks!

Cyn0619

Hi crystalphm



I requested the testing because both of my grandmothers had breast cancer and I have a daughter and niece. I was denied the test because I was over 45 at diagnosis I was 47 and they felt my family history was too far removed. My sister is going to request it at her annual check up this year and see if she can get it. I would of liked to know if I was positive or not for the gene.



Cindy

crystalphm

Ok, same here, I was 55 at time of diagnosis. It is my understanding that if you have had cancer, insurance picks up the cost, but if you have not had it, you pay. (Blue Cross insurance).

I would love to hear more thoughts....if anyone had this test for pure DCIS.

Laurie08

I had pure DCIS and I did have the genetic test done.  I was 34 when I was diagnosed and had a strong family history.  My mother passed from BC and her mother did as well.  Insurance did pay for the testing as well.  It came back negative.

Hope this helps!

J9W

I did not have it done even though a few docs wanted it done - and my insurance would have paid for it. I have such a family history of breast cancer that I dont' really think I need a test to be told it's genetic - my mother, her sister, my father's mom, and his sister have all had BC.  Plus, by the time that rolled around I just wanted to be left alone. Done with testing. 

J9W

oops...follow up.  I'm still being tested but not for genetics. I have a mammo and six months later an MRI so I'm still closely watched.

BLinthedesert

I had the test as well.  The primary reason they do this is that lumpectomy would not be recommended if you are BRCA positive.   BRCA is a huge risk factor, coupled with already being diagnosed with a maligancy - meaning that if you are positive for this mutation you would likely be counselled for bilateral mastectomy even if you had a small, one-quadrent, low grade, non-invasive (DCIS) cancer that would normally be a good candidate for lumpectomy.  Additionally, some doctors want to make sure you don't need to have your ovaries removed as well (as BRCA mutations also put you at high risk for ovarian cancer). 

Yes, genetics can be a "cause" of DCIS, which is part of the spectrum of breast cancers. 

Ddeal14

I also had the the test, the insurance paid for it. the nurse at the breast center asked me to spit into a small bottle and that was it. I am 42 with no family history. It came back negative.

crystalphm

I see my BS in a few weeks and I am going to ask about the testing, for myself as well as for my daughter, sister and niece. I'll let you know how it goes.

Everything was such a rush when I had cancer and surgery, it seems only now, months after that I am picking up details like this.

Thanks so much for your help. And thank you for describing the test.

CLC

I had the test.  I wanted it done before my umx.  If it had been positive, I would have had a bmx.  Insurance paid.  I had a maternal grandmother with bc.  Was negative...so now am lopsided

mbordo

I had the test after my DCIS diagnosis, but before my surgery.  I was 40 @ diagnosis w/a strong maternal family history (grandmother, great aunt and aunt - basically all of the females on my mothers side *except* my mom -2 of the 3 died of it.)

Insurance paid for it.  Results were negative, but I opted for BMX anyways (after 2 lumpectomies + dirty margins).

In 2007 it was a blood test.  My cousin asked for my records and had the test done, as well.   History on your father's side is a risk factor also.

 It's funny, people seem to think not having a family history *really* lessens their risk (in my experience, knowing people who have had mammo call-backs etc.).  While those of us w/family history (even if we are BRAC -)  are more vigilant and feel like it may happen to us someday, 80% of women who get it don't have family history - I think if they knew that, there would be less complacency!  It can and does happen to *anyone*!

CTMOM1234

As others have said, dcis isn't excluded from genetic testing and at least in my case, was completely covered by insurance. I was "young" (early 40s) with no known family history, but as we know, most bc patients do not have a family history (lucky us, firsts in our families). My bs sent me for an mri and genetic testing before he would recommend what surgical treatment would be best. I do not have either the BRCA 1 or 2 genes, thankfully, so underwent a lumpectomy. BS had suggested bmx and having my ovaries removed had test results come back differently, so he obviously took the initial dcis diagnosis as seriously as later stages (and as it turned out, I did have a trace amount of idc).

Waiting for the genetic testing results was among the most stressful experiences of my life, as one must absolutely try to imagine beforehand what to do with the results if they are unfavorable. What an absolutely awful thing that is and I remember my sister saying that no matter what my results, she didn't imagine ever getting tested -- she'd never had even a worrisome callback on a mammogram so had zero fears about bc despite my diagnosis. and said she would not have surgery just because a genetic test said she had a gene that may or may not lead to bc someday. Maybe I would have felt that way had I never begun this bc journey, but I doubt it, I imagine I'd want to be tested if she'd been diagnosed. We all must find our own inner peace. Wishing you the very best. 

crystalphm

Thank you for your comments, and to get me thinking what I will do with the results of knowing if I have the gene. I would become an advocate for other women in my family. Ultra sound and mammogram did NOT pick up my cancer, I found it myself. In fact, The mammogram results came back "all is fine" the same day i was diagnosed with cancer.

So proactive means an MRI now and then, to become very aware of your body so you can notice small changes. For me, believe it or not, while rubbing the soap between my two hands in the shower, I noticed my left breast did not jiggle the same way. It turned out to be multifocal DCIS...

I do not have ovaries, but I am interested in learning if i should have my uterus removed too...

 When I grow up i want to be an old woman too... :-)

DJL

I was diagnosed at 46 and did not have the testing done until about a year after my BMX. My surgery was scheduled pretty quickly after my diagnosis, so I didn't have it done then. I have an 11 year old daughter and her doctor really stressed the importance of me having it done, since we do have a strong history of cancer in our family. Like someone else posted, it was very easy, just a mouth swish and put it in a test tube. It came back negative and that gave me some piece of mind for my daughter and nieces. Insurance did cover it.

CTMOM1234

YES, YES, When I grow up i want to be an old woman too! 

May we all live long and happy lives. That is what I will wish for tonight.  

exbrnxgrl

BRCA testing can be done regardless of the type of bc. Blood or saliva can be used for testing. I think whether or not ins. covers the test, approx. $3,000, may depend on your insurer. Many of you mentioned family members who might or might not want to be tested. That's where genetic counseling comes in. My HMO went through a lengthy process, including extensive family history, to see if testing was appropriate. I already knew I had bc but wanted to explore the genetic link for my daughter's and granddaughter. I also had to take an on line class, with a test, that explained everything connected to the BRCA mutations, including what you need to consider in deciding whether to test or not. After all of this, they decided I did qualify for testing (family history, particularly dx of family members at a young age, Ashkenazi Jew). When the results came in I met with a genetic counselor and a psychologist. I was happy to be negative for my daughter's sake. Two things stuck with me 1. maternal/paternal history matter equally since you get 50% of your genes from each parent. 2. Only a small % of bc is due to the genetic mutations that are currently known, 5-10%. It really is not common. Hope this helps allay some concerns.

Caryn

mikita5

I had DCIS, one breast. Opted for bilateral mx. Had genetic test done. Came back negative but went ahead with the mx.

I do have many, many first cousins with (or has already passed away) bc. One maternal aunt died of bc. My Mother died of ovarian cancer. To this day, I wonder if she may have had breast cancer also, but was never tested for it (that was back in 1980).

My oncologist says there's lots of mutations that  haven't been discovered yet. When more are, I'll more than likely have one of those.  

exbrnxgrl

Your oncologist is right. The BRCA test can only look for known mutations. It is thought that many others exist. Caryn

crystalphm

I did not know this, so maybe in my own case the expense is not worth it (I would have to pay 30%).

 We have absolutely no breast cancer in either side of my parent's families, and most lived to be in their 90's...so it is a huge family with many women living very long lives. It seems to be even going back a few generations that cancer would have shortened lives even undiagnosed.

So If I am understanding you correctly, the genetic test only reveals what they KNOW to look for, but there are many variables (mutations) they may not even know to look for?

exbrnxgrl

Crystal,

Doctors believe there may be other genetic mutations but testing is only available for the known mutations. Have you spoken to a genetic counselor? They can help you determine whether or not the BRCA test would be useful to you. This could make your decision making easier and possibly save you some money!

Caryn

crystalphm

Thanks for the information, I will speak to my breast surgeon this week, and see what he says.

Is it routine to speak to a genetic counselor after breast cancer?

longislandmom

I had the BRCA testing done and I have pure DCIS.  I am pre-menopausal, my grandmother had breastcancer, and i have a daughter-- so i definitely wanted to know if there is a genetic component to my BC.  I tested negative for BRCA.   Insurance paid for the test-- though you need to get it pre-approved.  best of luck. 

exbrnxgrl

Whether one has dcis, IDC, any type of bc or no bc at all, if appropriate you can have the BRCA test. It is a test for genetic mutations and nothing more. When we talk about insurance and what they will or won't pay for or how much we may have to pay for something, please remember that we have many different types of insurance. As for genetic counseling, my mo asked me some quick questions about family history and ethnic heritage. Based on that, she sent me to a genetic counselor and psychologist specializing in genetics. After extensive family history, that involved calling my parents for info, it was felt that I fit the profile for having the BRCA genes. I took a short on line class which thoroughly explained everything in great detail. I had the test done and I was negative. There was no cost at all to me (I belong to an all inclusive HMO. Kind of like a Club Med for medical needs). Hope this helps. Caryn

crystalphm

It all helps so very much, thank you everyone!!

Anonymous

Crystalphm,

I had the test the same day I was diagnosed (haven't recieved the results yet but yeah). I am only 23 and have DCIS. Due to my lack of family history (I literally have no one in my family who had or with breast cancer) and my young age...my doctor believes I may have the gene mutation. Even if I was several years older, I'm sure I would do it either way. I have a younger sister and if I have it I want her to take the proper steps to take care of herself (she already plans to go for an ultrasound just to set a baseline for her breasts - she is 19). I am not happy about having cancer but happy that I caught it so early (most girls my age do not catch it especially since cancer in girls my age is typically more aggressive...which mine is). Due to these reasons, I want everyone in my family (including myself) to be informed. I know my insurance paid for it, but that is because it was ordered for me. Hope this helps!