"it goes from mother to daughter"
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Topic: "it goes from mother to daughter"
Posted By: SagePatientAdvocates
Subject: "it goes from mother to daughter"
Date Posted: Jan 16 2010 at 9:26am
Dear all,
I was doing some research on parp inhibitors a few minutes ago and came across this statement published in a UK newspaper..
"Flawed BRCA genes, which are passed from mother to
daughter, are responsible for around 2,000 of the 44,000 cases of
breast cancer each year in the UK."
Read more: http://www.dailymail.co.uk/health/article-521288/British-scientists-create-revolutionary-drug-prevents-breast-cancer-developing.html#ixzz0cmafEdzE - http://www.dailymail.co.uk/health/article-521288/British-scientists-create-revolutionary-drug-prevents-breast-cancer-developing.html#ixzz0cmafEdzE I was saddened to see this statement published in 2008 because while it is true that the BRCA mutation, that predisposes women to a huge breast/ovarian cancer risk, can be passed from mother to daughter it also can be passed from father to daughter. How do I know this? Well, I am a BRCA mutation carrier and I passed that mutation to my daughter, who was dx with TNBC in 2004. I was told, by several oncologists, in the late 1990's well into the 2000's that I should not worry about passing a gene mutation, that would predispose my daughters to breast/ovarian cancer because "it goes from mother to daughter." and in 2008, sadly, the same misinformation was passed along to many thousands of readers in the UK. I am writing this because some of you, in our community, do not have an apparent family history of breast/ovarian cancer and therefore have been advised not to have BRCA counseling/testing. It is extremely important, when doing a "cancer family tree" that you include your dad's side of the family. I have never had cancer (that I know of) to date, yet my daughter inherited the mutation from me. Knowing if you carry the BRCA mutation is important information for you and your family. Please don't pay attention to the "it goes from mother to daughter", solely, advice. My daughter was disadvantaged by the advice I received. She should have been tested earlier and started surveillance earlier. She was told to have her first mammogram at age 40. It should have been age 25, if we had known she was BRCA1+. She was diagnosed at age 36. We can't turn back the clock on that but the least I can do is alert others. Also, especially, if you have early-onset disease(under 40) some scientists feel you should be tested even absent a family history. javascript:AL_get%28this,%20jour,%20BMC%20Cancer.%29; - BMC Cancer. 2009 Mar 19;9:86. The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. http://www.ncbi.nlm.nih.gov/pubmed?term=Young%20SR%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Young SR , http://www.ncbi.nlm.nih.gov/pubmed?term=Pilarski%20RT%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Pilarski RT , http://www.ncbi.nlm.nih.gov/pubmed?term=Donenberg%20T%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Donenberg T , http://www.ncbi.nlm.nih.gov/pubmed?term=Shapiro%20C%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Shapiro C , http://www.ncbi.nlm.nih.gov/pubmed?term=Hammond%20LS%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Hammond LS , http://www.ncbi.nlm.nih.gov/pubmed?term=Miller%20J%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Miller J , http://www.ncbi.nlm.nih.gov/pubmed?term=Brooks%20KA%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Brooks KA , http://www.ncbi.nlm.nih.gov/pubmed?term=Cohen%20S%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Cohen S , http://www.ncbi.nlm.nih.gov/pubmed?term=Tenenholz%20B%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Tenenholz B , http://www.ncbi.nlm.nih.gov/pubmed?term=Desai%20D%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Desai D , http://www.ncbi.nlm.nih.gov/pubmed?term=Zandvakili%20I%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Zandvakili I , http://www.ncbi.nlm.nih.gov/pubmed?term=Royer%20R%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Royer R , http://www.ncbi.nlm.nih.gov/pubmed?term=Li%20S%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Li S , http://www.ncbi.nlm.nih.gov/pubmed?term=Narod%20SA%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstract - Narod SA . Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com BACKGROUND:
Molecular screening for BRCA1 and BRCA2 mutations is now an established
component of risk evaluation and management of familial breast cancer.
Features of hereditary breast cancer include an early age-of-onset and
over-representation of the 'triple-negative' phenotype (negative for
estrogen-receptor, progesterone-receptor and HER2). The decision to
offer genetic testing to a breast cancer patient is usually based on
her family history, but in the absence of a family history of cancer,
some women may qualify for testing based on the age-of-onset and/or the
pathologic features of the breast cancer. METHODS: We studied 54 women
who were diagnosed with high-grade, triple-negative invasive breast
cancer at or before age 40. These women were selected for study because
they had little or no family history of breast or ovarian cancer and
they did not qualify for genetic testing using conventional family
history criteria. BRCA1 screening was performed using a combination of
fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication
screening, the protein truncation test (PTT) and fluorescent
multiplexed denaturing gradient gel electrophoresis (DGGE). All coding
exons of BRCA1 were screened. The two large exons of BRCA2 were also
screened using PTT. All mutations were confirmed with direct
sequencing. RESULTS: Five deleterious BRCA1 mutations and one
deleterious BRCA2 mutation were identified in the 54 patients with
early-onset, triple-negative breast cancer (11%). CONCLUSION: Women
with early-onset triple-negative breast cancer are candidates for
genetic testing for BRCA1, even in the absence of a family history of
breast or ovarian cancer. PMID: 19298662 [PubMed - indexed for MEDLINE]
...........
all the best,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Replies:
Posted By: Carol (Tenn)
Date Posted: Jan 16 2010 at 9:55am
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Steve,
How does brca testing effect me? I am the first in my family to have cancer of any kind. I am 67 yrs old with one daughter age 46.
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St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Posted By: SagePatientAdvocates
Date Posted: Jan 16 2010 at 10:16am
Dear Carol,
your question should be asked to a Certified Genetic Counselor(CGC). That professional can best guide you regarding the BRCA mutation.
Dr. Narod, in another study gave this guidance on who his clinic tests...
"In the
absence of a family history, in our clinic we offer genetic testing to
all women with triple-negative breast cancer diagnosed below age forty,** to all women with invasive ovarian cancer7 and to all Jewish women with breast cancer.8
In the absence of one of these three indications, we test women when a
significant family history is present (two or more cases of early-onset
breast cancer (less than age 50) or ovarian cancer at any age). Testing
is gaining acceptance worldwide because of the increasing options
available to women with a mutation, and because of the development of
novel, individualized, cancer therapies."
this is the link to the complete study-
http://www.scielosp.org/scielo.php?script=sci_arttext&pid=S0036-36342009000800009&lng=en&%20nrm=iso&tlng=en - http://www.scielosp.org/scielo.php?script=sci_arttext&pid=S0036-36342009000800009&lng=en& nrm=iso&tlng=en
So based on these criteria, unless you are Jewish, my guess would be that a CGC might advise you not to test. But, again, I would have the conversation with the CGC, rather than rely on my unprofessional opinion. I am assuming (always dangerous to do) that your TNBC was found when you were over 40.
Also, to be sure, does your family history also include your dad's side?...I, as I wrote, do not have cancer but I have an extensive history of breast/ovarian cancer on my mother's side of the family. I inherited the mutation from her.
Carol, hope the above info helps...
all the best,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: mainsailset
Date Posted: Jan 16 2010 at 11:32am
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I've often wondered if this was an oversight within medical community. My dad's side carries the cancer in our family and my mom's side carries heart issues. Used to be a caustic family joke that you had your choice - congestive heart failure or cancer!
Now with all three of us girls diagnosed with cancer we're looking to protect (she who has the most information makes the best decisions!) the next generation by having genetic testing.
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Ghostie
Date Posted: Jun 07 2010 at 1:47pm
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Hoping that someone here is educated enough on this subject to answer a question for me!
I'm BRCA2 positive. My sister was recently tested for BRCA1 and BRCA2 and both came back as negative. Is this possible? Does that mean that we are only half-siblings? I tried to find an answer to this online without success.
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Age 49, DX 8/27/09, 1.8cm, Stage I, Grade 3; lumpectomy 9/21/09, clear margins, 2 nodes removed, BRCA2+, Oncotype score 67. Finished 4 DD A/C + 4 DD Taxol on 3/18/10. Completed radiation in June 2010
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Posted By: outnumbered
Date Posted: Jun 07 2010 at 2:10pm
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Hi Ghostie,
Please do not worry, that does not mean you are half-sisters. A person inherits genes from both parents, so you have a 50/50 chance of getting certain genes form each parent. Depending on which parent carried the mutation, you got the mutated gene from that parent and your sister did not, and got the non-mutated gene from the other parent. Its almost like you getting blonde hair from your mom and your sister getting red hair from dad. And, as you can see from Steve's posting above, either mom or dad could be the carrier.
I hope this helps.
Best wishes!
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: Ghostie
Date Posted: Jun 07 2010 at 5:07pm
Thanks, that's a huge relief to know. It's funny that you used the example of getting red hair from your dad, because that's exactly right...I did!
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Age 49, DX 8/27/09, 1.8cm, Stage I, Grade 3; lumpectomy 9/21/09, clear margins, 2 nodes removed, BRCA2+, Oncotype score 67. Finished 4 DD A/C + 4 DD Taxol on 3/18/10. Completed radiation in June 2010
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Posted By: Julia
Date Posted: Jun 07 2010 at 6:01pm
I qualified for BRCA testing purely on the grounds of my age and the type of tumour. There's not much cancer in my family history, and no known breast or ovarian cancer at all.
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Diag. 3/09 TNBC, IBC, 55mm.
4 rounds AC, 4 weekly Paclitaxol.
Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads.
2 more rounds of A/C, 6 months low-dose CMF.
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Posted By: Julia
Date Posted: Jun 07 2010 at 6:02pm
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Oh, and I should add, it's going to take SIX MONTHS to get the results. Not very CSI, is it?
How long does it take in the States? (I'm in New Zealand).
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Diag. 3/09 TNBC, IBC, 55mm.
4 rounds AC, 4 weekly Paclitaxol.
Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads.
2 more rounds of A/C, 6 months low-dose CMF.
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Posted By: outnumbered
Date Posted: Jun 07 2010 at 6:08pm
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Hi Julia,
In the states it takes about 3-4 weeks. I had no family history either but I was tested because of my age at dx (40) and both sides of my family are Ashkenazi Jewish. As it turns out, much to my surgeons surprise (thats another story) I was positive, then my Mom tested and so was she. Her sister (my aunt) is negative. My grandparents are gone so we have no way of knowing where the mutation came from. All I know is my mother is positive; who by the way is 66 and cancer free.
Heres to you being negative...fingers crossed!
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~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG
BMX (nipple-areola-sparing) 8/5/08
Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09
BSO 9/3/09
NED since 08/05/2008
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Posted By: Julia
Date Posted: Jun 07 2010 at 6:12pm
Thanks!
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Diag. 3/09 TNBC, IBC, 55mm.
4 rounds AC, 4 weekly Paclitaxol.
Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads.
2 more rounds of A/C, 6 months low-dose CMF.
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Posted By: Sugar77
Date Posted: Jun 07 2010 at 6:46pm
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I've asked to be tested but have been told by all of my doctors that I do not qualify. I was 45 at the age of diagnosis and have no known family history. I say no know because my father was an only child and so was my grandfather (his dad). Plus, my paternal grandmother died young of a congential heart condition so there isn't a pool of women on that side to know. My mother's side has more women (aunts, cousins, etc.) and nobody has bc.
Sherri
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DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.
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