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Topic: Family history risk question

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

Posted on: Dec 22, 2007 04:00PM

mtgirl wrote:

When discussing my risk of breast cancer due to family history, I'm always told I have low risk because my mother, aunts, sisters, or daughters have no history. Well, I have NO siblings and only one son. My mother was an only child and had lung cancer. However, my grandmother was one of ten children, and four of her sisters had breast cancer. Sounds pretty risky to me. Should I be pressing the issue?

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Dec 22, 2007 04:19PM awb wrote:

when they talk about strong family history, they are usually referring to several primary relatives with bc; primary being mother, sister or daughter. Your grandmother's 4 sisters (great-aunts) would not be considered primary relatives, but it is certainly something to let your docs know about. Your mom's history of lung cancer would not impact your risk for bc.

 My MGGM had bc, my MGM had colon ca, my mom has had both bc and colon ca, and I have LCIS; I have not been tested yet for BRCA as I'm probably at low risk per my oncologist, but I may go for genetic counseling in the near future.  There may be some other bc gene in my family. 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Dec 23, 2007 10:00AM leaf wrote:

I think that it would be good to discuss your situation with a board certified genetics counselor.

There are some families that don't have sibs or have only males in a generation, which may make the genetics story more complex. One generation in my family was only sons, and I didn't know if one relative had pre- or post-menopausal bc, and I was referred for genetics counseling. (I only had 2 relatives with bc in my extended second degree family, out of about 20 second degree members (including males.) (I have LCIS.)

Some of the signs that suggest higher risk for BRCA include premenopausal bc, breast cancer in males, ovarian cancer, and/or Ashkenazi Jewish heritage.

Even though my risk for BRCA was low, and I opted not to get tested, I found the analysis very informative and helpful.

You may want to check out the costs and insurance issues though. I paid out of pocket for my counseling session and that cost <$400 (in Mar 2006).

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 23, 2007 01:45PM - edited Dec 23, 2007 01:47PM by Beesie

In addition to the list that leaf provided, the other risk factor that ties to the BRCA genetic mutation is prostate cancer among the men in the family. 

A few things to consider:

  • It sounds as though it's possible that the BRCA mutation may have been in your grandmother's family, but that doesn't mean that your grandmother had the gene.  It's not unusual for some siblings to carry the mutation while others don't.  This is common, actually.  That's because this particular gene is inherited from either one's mother or one's father.  So let's say that your great-grandmother carried the gene.  She may have passed it along to half of her children, including your grandmother's 4 sisters.  But the other half of the children, including your grandmother, may have inherited this particular gene from their father.  So they got the healthy gene.  If that's the case, then your grandmother would not be able to pass the gene to your mother, and therefore, to you.  Other branches of the family may be affected but your branch may be spared.  Since the risk to get BC is so high for anyone who carries the genetic mutation, I'd say that since neither your grandmother nor your mother had breast cancer, it's doubtful that the genetic mutation is present.
  • One other thing to keep in mind as you evaluate your genetic risk is that you have to look at both your mother's side of the family, and your father's side of the family.  If you have aunts, cousins or a grandmother on your father's side who's had BC or ovarian cancer, that could be sign of risk.  Similarly, you'll want to look to see if any of the men (on either side of the family) have had prostate cancer.
  • The last thing to keep in mind is that while we all worry about our genetic risk to get breast cancer, the fact is that the vast majority of breast cancer cases (approx. 80%+) are not caused by genetics.  So even if it's determined that you are not at risk because of family history, this doesn't mean that you won't or can't get breast cancer.  You may have personal risk factors (dense breasts, age at which you got your periods, etc.) and even if you don't, you still need to be sure to get regular mammograms and to do breast self-exams.

All that said, if you are wondering about your family history risk, the best idea is to meet with a genetic counsellor.  They can advise you as to whether they think you might be at risk or not, and if so, whether it makes sense to be tested for the BRCA genetic mutation.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 24, 2007 06:19AM veggievet wrote:

Dear MT Girl,

Your point is an excellent one and one that health care providers who are not experts in genetics often miss.  It is critical to press for a referral with a genetics expert who will look at your entire family history, including your "family structure" which researchers have now found to be important in determining risk (ie-if you don't have a lot of women in your family, then you may not see a large family history).  Other considerations include your own diagnosis (ie-age, type of cancer, etc).  It is frustrating as an advocate for the high-risk and BRCA community how few doctors will refer women to experts in genetics.  Genetic counselors and medical geneticists are specialists in hereditary disease and genetics (which is a rapidly changing area of information and hard for non-experts to keep up). 

I would be happy to help you find a genetics expert in your area.  Please feel free to e-mail me at:

sueanddan@att.net

Just on a personal note, I was the first in my family with breast cancer, and the third with cancer period (my aunt had lung cancer and my paternal grandmother had "kidney cancer" which we now think was ovarian cancer).  Turns out that I had the gene mutation--BRCA2.  Please insist on a referral to a genetics expert and pursue this.  They will definitely be able to tell you if your family history is indicative of a hereditary mutation.

Warmest regards,

Sue 

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Dec 24, 2007 12:03PM Peaches70 wrote:

One of the first questions I've been asked is "any family history?" and I say no, but not much of family to check. I have one sibling - male - no aunts, one uncle, one cousin - male. Therefore, the likelihood of a family history is severely limited. Besides, only 20% of BC patients have family history.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Dec 28, 2007 04:09PM mtgirl wrote:

Wow, all this information is great and has helped me understand the genetics side better. My sister-in-law was diagnosed four years ago and went for genetics counseling, so I'm going to contact her and move forward with it. Since I just had an abnormal mammogram for the first time and will likely have a biopsy, I will continue to be vigilant no matter what the geneticist tells me, but should any of this be confirmed as bc the genetics would help me make treatment decisions. It had a huge impact on the aggressive treament path my sis-in-law took, and she's a 4-year survivor.

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Dec 31, 2007 08:50AM SEV wrote:

One sister(there were 4 girls in my immediate family) and I were both diagnosed with IC within 5 months of each other (ages 41 and 46) I met with a genetic counselor and decided to do BRCA studies.  I had a "variation" (vs. mutation) of BRCA2 only seen in one other patient.  They requested additional studies from my diagnosed sister and father as his family history warranted it.  Both had the same "variation" which led to the belief that this would most probably reveal as a "future" mutation as more and more people were mapped.   Family history was extensively positive for prostate (4 men), colon & breat (1 PA -BC <age 50, CC in 70's), stomach (PGm) and pancreatic (PA)- all reflective of a BRCA2 problem.  Based upon this information, I opted for prophylactic removal of breasts and ovaries, my sister did not.  I am now over 6 years cancer free.  By the time my sister decided to go the mastectomy route it was too late, she developed IBC.  Genetic testing can be a great tool to decide treatment courses.  I will never know if I had chosen any other option if my cncer would have grown more, but that is OK with me.  I plan on seeing grandbabies some day! 

Common beliefs even among oncologists used to be that  paternal genetics are not related to a woman's BC.  Geneticist will tell you that simply is not true.  I would encourage any one to seek genetic input if they are considering it.  I never knew so many cancers were related to those genes.

Sharon Dx 10/26/2001, IDC, <1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR-, HER2+
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Jan 3, 2008 08:58AM Barbie7 wrote:

SEV,

You mention a link between BRCA2 and stomach and pancreatic.  Is BRCA1 the link between breast, colon and prostate?  I have all of those.  Stomach, pancreatic, prostrate, breast and colon (plus leukemia and hodgkins) on one side and Breast, colon, lymphoma and leukemia on the other.  My cousin and I are both DX pre-menopausal (I'm 43) BC.  I'm meeting with my medical oncologist for the first time today.  I've put together a chart with my family history.  I'm guessing a discussion with a genetics counsellor is in order.  I just wasn't aware that there were any links between stomach and pancreatic and Breast. 

Barbie

Liver tumor that is 'concerning for being mets' 2 liver biopsies and we're still watchin it. Barbie Dx 11/9/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Jan 3, 2008 06:07PM nash wrote:

Barbie--I'm familiar with the BRCA2/pancreatic/breast link, as my dad was an Ashkenazi Jew who died of pancreatic cancer. The docs all thought I'd be BRCA2 for sure, but it came back negative. Go figure.

I had an onc tell me today that even though my BRCA testing came back negative, to keep myself educated of new advances in BRCA mutations. She said there could be a need to retest in the future, due to potential new discoveries in the BRCA gene family. 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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Jan 4, 2008 07:10AM Barbie7 wrote:

Nash,

My Dad is a research geneticist (in agronomy).  He looked at one of the books I have that explains the gene mutation and was able to explain it to me further.   He concurred with your onc. saying that further developments in testing and identifying BRCA mutations could help researchers find new treatments and potential cures.  While they've identified hundreds of mutations, they do not clearly understand WHY they mutate. 

My onc took one look at the family history chart I presented him and referred me to a genetic counselor.  I'm not sure if I'll test or not, but this is a good first step in gathering more information.

Barbie

Liver tumor that is 'concerning for being mets' 2 liver biopsies and we're still watchin it. Barbie Dx 11/9/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Jan 13, 2008 04:03PM SEV wrote:

Barbie,

I hope you had your questions answered already.  I am sorry I have not been back to the site in 10 days.  My doc says the BRAC2 pancreatic/colon connection is stronger in the BRCA2.  The lymphomas and leukemias are not connected to the BRCA genes.

Hope things are going well for you,

Sharon

Sharon Dx 10/26/2001, IDC, <1cm, Stage I, Grade 2, 0/9 nodes, ER+/PR-, HER2+
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Jan 16, 2008 07:04AM Barbie7 wrote:

Sharon,

I met with the genetic counselor yesterday.  She too said that they lymphomas and leukemias weren't related to the BRCA genes, but added that she's never seen so many cases.  She feels I have a moderate risk for BRCA2 mutation on my mother's side.  The risk could be elevated to high once I find out if my Mom's sister's had hysterectomies that also removed their ovaries.  The risk on my father's side is also moderate, and would be elevated to high once we learn how my PGM's sister died at age 33 (no kids).  Now I'm left with the decision... to test or not to test.  I asked the GC how surveillance would change for me if I tested positive and she said the only change would be adding the surveillance for ovarian cancer, as I will already be followed closely for BC because of my current diagnosis of BC.  So, I'm weighing everything now, and will probably let it rest for a few weeks so I can really make sure it is what I want to do.

Barbie

Liver tumor that is 'concerning for being mets' 2 liver biopsies and we're still watchin it. Barbie Dx 11/9/2007, DCIS, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+
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Jan 16, 2008 08:09AM leaf wrote:

I think its an excellent idea for you to let it rest for a while until you decide what is best for you. Do what is best for you at YOUR pace.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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