My mom has breast cancer. How do I get tested?

cyndiaba

My mom has breast cancer. How do I get tested?

cyndiaba

Hi everybody,

A few weeks ago my mom was diagnosed with stage 2 breast cancer and underwent a lumpectomy.  She starts chemotherapy next week and will then have radiation.  Needless to say, I'm scared.  We're extremely close, but I no longer live nearby.  I flew home for the surgery, but won't be there for the chemotherapy.  I'm hoping to fly home for Mother's Day, but the flights are out of my price range right now.   My mom is only 47 and I'm 28.  The doctor said that her type of cancer in not genetic.  Does that mean that she doesn't have a mutation in the BRCA?  Also, I want to get tested to see if I'm at risk. Do I have to go somewhere special to get tested, or can my regular doctor order the test?  I do have insurance, but I'm not sure if I want them to know about the test.  Can my doctor keep it confidential from my insurance, or would I have to go somewhere else for the test?  Thanks in advance.  I'm glad I found you guys.

Anonymous

Hi cyndiaba....I'm not very familiar with BRCA testing because I didn't have it done, but hopefully others will come along soon and advise you. I will say that you might need more explanation regarding your mother's type of BC to be able to really evaluate the doctor's claim that it's "not genetic." As you probably know, the only reliable way to know the genetic character of the cancer (to my knowledge) is through genetic testing. If you're interested in getting tested yourself, I'd say that you'd be best off with a breast specialist, rather than your PCP. I don't know if your insurance would cover the test though, so you might want to call them anonymously and ask if there are circumstances under which they would cover it.

I'm sorry that your mother had to become "one of us," but please be assured that she will most likely do well with her aggressive treatments. I was also stage 2, had a lumpectomy, chemo and radiation. That was 2 1/2 years ago and I'm still doing fine!

~Marin

Beesie

cyndiaba,

I'm sorry to hear about your mother's diagnosis and I understand why you are thinking about genetic testing.  While the test itself is only a blood test, normally it's done by a genetic counsellor.  So if you want to be tested, you should ask your doctor for a referral to a genetic counsellor.  The counsellor would review your family history to determine your risk level to have the breast cancer gene, he/she would discuss the implications of the test (whether you test either positive or negative) and then you can decide if want to go ahead.

A couple of things, however.  Most breast cancer - about 85% - 90% - is not genetic.  So unless there is more breast cancer, or ovarian cancer or prostate cancer in your mother's family (her siblings, parents, aunts/uncles, grandparents), it's likely that her breast cancer is not genetic.  This isn't a reason to not get tested, however.  If there isn't a lot of family history available, or if your mother is from a small family, then the family history itself might not a good indication. 

Next, although most BC is not genetic, I don't know why the doctor said that your mother's type of BC is not genetic.  Do you know what type of BC your mother has?  Some types of BC are found more often among women who have the BRCA genetic mutations, but most common types of BC can be caused by the BRCA mutation.

Lastly, if you believe that genetic testing is something you want to do, it's actually your mother who probably should be tested first, rather than you.  Usually the preference of the genetic counsellors is that someone in the family who already has BC be tested first, since they are most likely to carry the genetic mutation.   If they do have the genetic mutation, then there is a 50% chance that their siblings and children will have it too.  So if your mother tests positive, then you could be tested (if you choose).  But if your mother tests negative, then it's impossible for you to have inherited the genetic mutation from her (although you could still inherit it from your father, if he happens to have it). 

Here is a website with some information about the genetic test:

http://www.cancer.gov/cancertopics/factsheet/risk/brca

veggievet

Hi Cindiaba,

Unfortunately oncologists and breast surgeons aren't necessarily the experts in genetics.  My strong recommendation is for you and your mom to find a board-certified genetic counselor.  They are experts in cancer genetics and hereditary disease.

Most cancer is not genetic.  Your mom's diagnosis in her 40s increases the chance it is genetic but doesn't mean it is.  But there really is no specific "genetic" type of breast cancer so unless her oncologist did genetic testing (and your mom would know) I don't think you should take that as the last word. 

I have a BRCA 2 mutation and do advocacy for the BRCA community.  I'd be happy to help you find a genetics expert in your area.  Feel free to e-mail me at: sueanddan@att.net. 

Also I strongly recommend checking out the FORCE website.  FORCE is devoted to hereditary breast and ovarian cancer.  You can view it at:

http://www.facingourrisk.org

Hugs and love,

Sue

angie27

Hi, I want share my story with you,

I am 51 my daughter is 35, when I was dx in December, my Doctor told us that my daughter should get a mamo, we did that, and it turn out that she had a tumor thank God it is B9, however because it is a tumor we decided that it should be remove now, I did the brca testing, I do not have the results yet, this just goes to show that should I have not being diagnosed with BC, my daughters tumor would have gone unknown due to the fact that they don't recommend mamos until the age of 40 ,unless of course you are at a high risk, which we were not, because no one in my family has or has had BC, I am the first one. So the moral of my story is that if we would have waited 5 more years for her mamo, God knows what could of happen, so this is the only reason why I am happy I was diagnosed with BC.

Regards 

mtbmom

cyn- I too am sorry to hear about your mom-I hope she joins here, there is so much support.  My mom had bc @ 8yrs ago.  There's a lot of bc & ovarian cancer in my family, so I got tested. My test came back neg for both, but I now have Alh & LCIS, and am being checked tomorrow for another spot.  I wasn't a genetics major, but, I can tell  you my mom's path report read ALH, Lcis, Ilc that metastisized into 3 nodes.  We both had micro calcs on mammos & mris.  I don't want to scare you, just to say be diligent in your own care. 

Also, from what I understood, even though I had the test, the results were not posted with the insurance company-it was between me & the dr.  My Dr. ordered it, & my insurance paid all but my deductable, but they were not sent the results. 

 Best of luck to you, and to your mom- hugs too!

Sassa

Angie,

There is no history of any type of cancer in my family.  In spite of that, when I was diagnosed at 56, my daughter, 22, was immediately sent in for a baseline mammogram. She was told she would have a mammogram every two years until she was 30 and every year after that.

The only rationale that I can think of is the reason for my developing BC is unknown, there is a possibility of a environmental cause that my daughter would have also been exposed to.

wishiwere

Interesting Sassa.  What type of BC do you have that they considered your dd to be at risk like that?  It has never been brought about my own dd to have a baseline or anything in regards to her breast care.  She's 25, but it's been a concern I have of course.  I'm the first one that I know of, but my mom had one sister, and my dad, one sister who had BC, but not till age 82 a few yrs ago.  Mine was at 49, so I'm really borderline whether it's early or not.  I know they say before 50, but geesh, 49 is close.

cyndiaba

Thanks everybody!

My mom had Invasive Ductal Carcinoma (not sure on the spelling).  She was stage 2 due to the size of the tumor (2.7), but the margins and lymph node that they removed were clear.  I'm hoping to fly home for Mother's Day and I will talk to her about the gentic testing.

cyndiaba

Oh, and I forgot to mention that this is the first case that we know about in my mom's family.  However, my grandma did have a benign tumor once and is estranged from her family, so I'm not really sure about the accuracy of the family history.

cyndiaba

Here's a link to my blog where I share some of my feelings.

http://citygirlsnyc.blogspot.com/

rumoret

cyndiaba,

I had lumpectomy on April 13, 2006 and your post caught my eye because of the date among other things. I did go on and have a mastectomy on my birthday April 20, 2006. My mother was the 1st in her large family of 11 with 5 being girls, and she was the first to ever have breast cancer. She was diagnosed at age 69 years old...triple negative. I was 49 years old when I had my mastectomy there was twenty years between when I got it and when she got it.

I have not had genetic testing and neither has my mother. My father was adopted and his birthmother passed away at 90 years father 93. My dad was diagnosed with prostate cancer at 70 years old.....I would have to do more research to see if any of his birth aunts or uncles had a cancer. I wish the cost was more reasonable I would get tested today....but I will have to budget for that. So it is just my mother and myself who have breast cancer....the only difference is mine is estrogen and progestrone positive.

Also, I have two daughters that are turning 26 and 27 years old.....the testing would be done for them. This is one of my goals.

I hope your mother has family and friends who can help her out should she need some during her chemo treatments. Everyone is different when it comes to chemo....some continuing working, some can't get away from work at home , and others just need some assistance.

Anyway, your mom's age and yours......struck close to home with my family and my diagnosis.

Sending you my love,

Terry

Leeayn

What we have had recommended - I'm 47 and just diagnosed; my mother was 56 at her diagnosis - is to have your daughter checked 10 years earlier than the mother's diagnosis.  Both my mother, myself and my mother-in-law all have been diagnosed.  The Dr. advised my girls (ages 25 <almost 26> and 24) to not spend the money on the gen. test, use that money on mammograms.  Chances are with the history, they are more than likely to get BC rather than not. 

So they will start getting mammograms this year and repeat every 3-5 years until the magical age. 

I, on the other hand, have had mammograms since I was 24 when my mother was diagnosed

It's a personal decision if you get tested.  I chose not too, it would not have stopped my cancer, just made me wonder when it would happen. 

Keeping the Faith!  <><

veggievet

Hi Cyndi,

Where does your mom live?  Ductal carcinoma is the most common type of breast cancer and it *can be* hereditary.  Regardless of whether or not you and your mom decide to pursue genetic testing, it is a good idea to meet with a genetic counselor, they are experts in hereditary cancer.  They will not try to talk you into or out of genetic testing but make sure that you have the most up-to-date information in order to make an informed decision about testing. They will also make sure if you do decide to proceed with testing that the correct test/s are ordered and will be able to appropriately interpret the test results. Board-certified genetic counselor take a "nondirective" approach, which means they won't tell you what to do but will help you decide what makes the most sense for you. 

Feel free to e-mail me at:  sueanddan@att.net  if you'd like help finding a board-certified genetics expert in your area.

Warm regards,

Sue

bcml

Hi Cyndiaba. Sorry about your mom. My mom was diagnosed when I was a teenager (now I'm 37). I was advised to have my first mammogram at 30 (instead of 40) and to have another one every 2 years. A couple of years ago I talked to my mother's oncologist about genetic testing and after checking my family history (my great grandmother also had BC and one of my mothers uncles had some other kind of cancer) and asking all sorts of questions about my family origins, he explained that it probably wasn't a good idea. From what I understood, they only know some of the cancer genes, but there could be others they haven't identified yet. So, there was a great chance that I would spend a lot of money to get an unconclusive result. They would have to first test my mother and only if she tested positive for one of the genes, would I be tested. In this case, I would get a conclusive result, if I have or don't have the gene. But, if she tested negative, it wouldn't mean her cancer is not genetic, but there would be no way to test me... So he advised me to keep having regular mammograms. I think you should talk to a genetic counselor or an oncologist to evaluate your specific situation and to get all the explanations about the possible results and the possible courses of action in case of a positive result. Sorry for any mistakes, I'm brazilian.

ormelisajo111

I am new to the site but very concerned about mysel and my 2 daughters.My mother and her sister have been diagnosed bc in last 2 years.My mums cousin has just been diagnosed .Great grandmother had bc and her daughter.I have been referred for genetic counselling .For my daughters aged 16 and 9 its worse as their paternal grandfather died of bc.I am suffering from sore nipples just now in both breasts .(no lumps detected on self examination should i be concerned?