Ovarian cancer risk for non-BRCA women with bc risk?

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Ovarian cancer risk for non-BRCA women with bc risk?

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I have LCIS, ALH and nothing worse.  I saw a genetics counselor who said my risk of BRCA was low, about that of an AVERAGE Ashkenazi Jewish woman-which I think was about 4%.  I opted not to be BRCA tested (my insurance would not cover.)  I have a history of possible endometriosis, have no family history of oc.

I'm on tamoxifen (2 more years to get a total of 5 years), so this would not be to shut down estrogen production.  My gyn was concerned about my risk of oc. In this Mayo website, it lists bc as a risk of oc - it sounds like its independent of BRCA.  http://www.mayoclinic.com/health/ovarian-cancer/DS00293  It says most ovarian cancer is NOT due to BRCA.

Has anyone had their health care provider be concerned about their oc risk when they are at low risk for having a BRCA mutation?

I hadn't realized that most women who get oc do NOT have BRCA.

kreativek

Hi Leaf:

I am BRCA negative from a family with a history of breast cancer (on both sides).  I had ADH (atypical ductal hyperplasia) and opted for a preventive mastectomy.  I had very dense breasts and I was tired of surveillance. 

When I did my genetic counseling and testing I was BRCA negative.  My counsler ran my information through a computer risk model and my ovarian risk was higher than usual. The reason was lifestyle factors:  no children, tubes not tied, still had uterus and had not been on birth control pills for 5 years.  I took this information to my regular gyn who didn't know if I should remove my ovaries.  She sent me to a onc. gyn who felt I was at increased risk, but still not high risk.  She recommended I remove my ovaries but also stated that she does not have an unbiased opinion due to her seeing so much ovarian cancer.  This doctor seemed to feel that coming from a breast cancer family and having "pre-cancer" cells myself could be a risk factor but was a "grey area".  I have also seen information that lists having breast cancer or a family history of breast cancer was a risk for ovarian cancer.  However, now that BRCA knowledge is out there, I don't see this very often.  My friend was at the FORCE conference and asked about this.  She has no family history of ovarian cancer, just breast cancer.  She has had the preventive mastectomy.  The researcher she asked felt she was at no higher risk for ovarian cancer since she was BRCA negative. 

I was right on the verge of menopause as I was 48.  After my preventive mastectomy, I did not have my period for 9 months.  I spoke to my breast surgeon and my plastic surgeon and they both thought it would be a good idea since "my ovaries weren't working anyway".  I was having a breast revision anyway, so I just combined the two procedures.  So it may have been over-kill, I don't know.  Fortunately, my menopause symptoms got no worse after I removed my ovaries. 

In summary, I had trouble finding any good information on BRCA negative ovarian cancer risk.  I do not know of any family history of it in my family. 

 Kris

LISAMG

http://www.nature.com/bjc/journal/v100/n2/full/6604830a.html

Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation.

  

Genetic testing for mutations in BRCA1 and BRCA2 is available in Canada for women with a significant family history of breast cancer. For the majority of tested women, a BRCA1 or BRCA2 mutation is not found, and counselling regarding breast cancer risk is based on the review of the pedigree. In this prospective study, we estimate breast cancer risks in women with a family history of breast cancer and for whom the proband tested negative for a mutation in BRCA1 or BRCA2. Families with two or more breast cancers under the age of 50 years, or with three cases of breast cancer at any age, and who tested negative for a BRCA1 or BRCA2 mutation were identified. Follow-up information on cancer status was collected on all first-degree relatives of breast cancer cases. The standardised incidence ratios (SIRs) for breast cancer were calculated by dividing the observed numbers of breast cancer by the expected numbers of breast cancers, based on the rates in the provincial cancer registries. A total of 1492 women from 365 families were included in the analyses. The 1492 first-degree relatives of breast cancer cases contributed 9109 person-years of follow-up. Sixty-five women developed breast cancer, compared to 15.2 expected number (SIR=4.3). The SIR was highest for women under the age of 40 (SIR=14.9) years and decreased with increasing age. However, the absolute risk was higher for women between the age of 50 and 70 (1% per year) years than for women between 30 and 50 (0.4% per year) years of age.

  

There was no elevated risk for ovarian, colon or any other form of cancer.

  

  

Women with a significant family history of breast cancer (ie, two or more breast cancers under the age of 50 years, or three or more breast cancers at any age), but who test negative for BRCA mutations have approximately a four-fold risk of breast cancer. Women in these families may be candidates for tamoxifen chemoprevention and/or intensified breast screening with an MRI.

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Thank you so much, kreativek and LISA.   Especially, thank you kreativek for sharing your experience!! It sounds like its a gray area.

In the paper cited, its unclear to me, but it sounds like the study was mostly (1492 people) looking at people who did NOT have a personal history of bc or higher risk for bc (i.e. LCIS, ALH, ADH).  I haven't looked at all the tables, but to me it sounds like at most 65 of these non-BRCA people had a personal history of bc.   That's not very many, especially during this 6 year time span (which I'm also assuming.) If they are combining these 65 people in the 1492 people group, if there was a difference between the two groups, then the influence of the 1492 people could overwhelm any possible effect of the 65 people.

Maybe I'm reading this paper wrong.  

This person opined (2006) that "A few years ago we published a study in the New England Journal of Medicine that showed that in very high-risk women, such as gene carriers, removing the ovaries does reduce the risk of breast cancer, but it has to be done [before menopause]. If you do it at [age] 50 or above, we did not see any benefit or very little benefit.

We also learned that the risk of ovarian cancer, which is slightly higher in women with breast cancer, is overwhelmingly in gene carriers. If you are not a gene carrier, [your] increased risk of ovarian cancer is relatively small. "http://www.lbbc.org/content/news/removal-of-ovaries-and-dcis-recurrence-risk.asp?section_tag=H

"Personal history. Women who have had breast or colon cancer may have a greater chance of developing ovarian cancer than women who have not had breast or colon cancer."http://www.penncancer.org/cancerprograms_detail2.cfm?id=5

More later if I can find more.  Thank you again for your responses.

LISAMG

Leaf,

OVCA @ any age can be a red flag for BRCA mutation, it is my understanding. I disagree with most ovca's not being genetically predispositioned, especially given most ovca research is familial based and not much is known about sporadic ovca. Women with BRCA related ovca tend to have better outcomes/prognosis as well with chemo and longer survivals, than non carriers.  There are some current recommendations being strongly advised to seek genetic testing for any woman with the disease at any age.  Interestingly, any woman under the age of 50, especially if in their 40's or younger, who develop triple negative bc should also seek genetic counseling, regardless if they have no family history either. TN Breast cancers are often BRCA related.

I am un-informative BRCA negative, with bc/ovca on BOTH sides. Two affected family members have also tested negative, one with bc and the other with ovca. My risk is high, but we dont know how high, unfortunately. However, given the lethalness of ovca and it being the silent killer, its now recommended for me to do the BSO. What is your family history of BC? Has anyone affected been tested?  I do agree that women with hormone positive BC are at risk for OVCA and I do know many women who have been recommended to remove their ovaries without a mutation. Definitely, a grey area, it seems. Without a BC diagnosis or any family history of ovca, I would find it extremely difficult to consider surgery, but this is only my personal opinion. There are many proven long term health risks with the BSO especially when performed being pre-menopausal, unfortunately,...making these decisions even more excruiatingly painful. Best wishes to you.

leaf

Re your quote:" I disagree with most ovca's not being genetically predispositioned, especially given most ovca research is familial based and not much is known about sporadic ovca."

Yes, ovarian cancer at any age is a red flag for ovarian cancer (i.e. BRCA testing). That doesn't mean that all/most people with ovarian cancer are BRCA related.  

Here are the BRCA mutation testing guidelines:

"The likelihood of a harmful mutation in BRCA1 or BRCA2 is increased with certain familial patterns of cancer. These patterns include the following (15):

• "For women who are not of Ashkenazi Jewish descent:
  • two first-degree relatives (mother, daughter, or sister) diagnosed with breast cancer, one of whom was diagnosed at age 50 or younger;
  • three or more first-degree or second-degree (grandmother or aunt) relatives diagnosed with breast cancer regardless of their age at diagnosis;
  • a combination of first- and second-degree relatives diagnosed with breast cancer and ovarian cancer (one cancer type per person);
  • a first-degree relative with cancer diagnosed in both breasts (bilateral breast cancer);
  • a combination of two or more first- or second-degree relatives diagnosed with ovarian cancer regardless of age at diagnosis;
  • a first- or second-degree relative diagnosed with both breast and ovarian cancer regardless of age at diagnosis; and
  • breast cancer diagnosed in a male relative.

• "For women of Ashkenazi Jewish descent:
  • any first-degree relative diagnosed with breast or ovarian cancer; and
  • two second-degree relatives on the same side of the family diagnosed with breast or ovarian cancer." http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

*******************However, if you are a candidate for BRCA testing, that does not mean that most women who get ovarian cancer have a hereditary disposition for it.************

Yes, not much is known about sporatic cases of ovarian cancer.  However, in these studies or websites, they refer to an incidence of hereditary/BRCA - associated ovarian cancer as about 10%.  That means that about 90% of ovarian cancer is thought NOT to be associated with hereditary ovarian cancer.

"It is thought that germline mutations in BRCA1/2 might be responsible for as much as 10% of all ovarian cancer cases and all families containing either multiple case, site-specific ovarian cancer cases or breast and ovarian cancers together."http://www.ncbi.nlm.nih.gov/pubmed/16521688

"The public health challenge is that 90% of ovarian cancer occurs in women who are not in an identifiable high-risk group, and most women are diagnosed with advanced-stage disease."http://www.ncbi.nlm.nih.gov/pubmed/16482731

"Our findings in this prospective study confirm approximately 1 in 10 patients with ovarian cancer carry a germ line BRCA gene mutation associated with HBOC, and also indicate that a large number of these patients are over 50 years of age at diagnosis." http://www.ncbi.nlm.nih.gov/pubmed/14746861

"About 1 in 10 cases of ovarian cancers are linked to gene changes that can be found with certain tests. These changes are also linked to an increased risk of breast and colorectal cancer. Please see the section on prevention to learn about genetic counseling and testing." http://www.cancer.org/docroot/CRI/content/CRI_2_2_2X_What_causes_ovarian_cancer_33.asp?rnav=cri

There aren't many studies on non-BRCA/familial associated ovarian cancer.  That doesn't mean it doesn't occur.

My genetics counselor said there was more cancer in my family than usual, but I was at low risk for BRCA.  She said the excess cancer that I have in my family is probably multi-factorial.  I have no first degree relatives with bc.

Best wishes to you.