This must be so scary for you, I can't imagine. I am gald you shared your struggles and I hope it can help us bring a healing conclusion to the discussions that have been a bit disturbing to some of us here and more importantly help you find some support here.
I have been thinking about this, and was reluctant to post, but I was hoping I could add a different perspective to what has been discussed. The study (I included the abstract below) that was originally posted studied women with both BRCA1 and BRCA2 and found the dramatic effect for BRCA1 and none for BRCA2. There are lots of studies suggesting a benefit for all women, but nothing like the magnitude of effect for people with BRCA1. There are other families with a higher risk of breast cancer who don't have either of these genes. No one has studied how breastfeeding effects their risk of getting cancer, it may have a huge effect, or none at all, but considering that it is really hard to find anything that you can do to actually change your risk of getting breast cancer, I would think that until we know more, breastfeeding should be condidered an important preventative measure (unless you know you have brca2).
The difficulty with screening during pg or bf, is mostly a matter of education. Lumps are not normal at anytime, and a workup shouldn't be delayed, but both women and doctors do delay. There is no reason that you can't get a mammogram during breastfeeding. It may be a bit harder to interpret (although this seems mostly like speculation I couldn't find any studies that actually show this - would be happy to share the few references I found if you want), or a bit more painful, but that isn't a reason not to get one.
For you, maybe you could even arrange to get the mammogram right after you deliver and before your milk comes in. Or, there is a recent study about MRI for breast cancer (I included the abstract), it may take a bit of effort to find a radiologist comfortable with this, but it sounds like it could be a great option!
I wish you and your sister al the best as you face this difficult time.
Aimee
As an aside, I found this great link discussing testing for brca1 and brca2 that you may find interesting.
http://cis.nci.nih.gov/fact/3_62.htm
This is the reference on MRI:
N Engl J Med. 2004 Jul 29;351(5):427-37.
Comment in:
N Engl J Med. 2004 Jul 29;351(5):497-500.
ÂÂÂ
Efficacy of MRI and mammography for breast-cancer screening in women with a familial or genetic predisposition.
Kriege M, Brekelmans CT, Boetes C, Besnard PE, Zonderland HM, Obdeijn IM, Manoliu RA, Kok T, Peterse H, Tilanus-Linthorst MM, Muller SH, Meijer S, Oosterwijk JC, Beex LV, Tollenaar RA, de Koning HJ, Rutgers EJ, Klijn JG; Magnetic Resonance Imaging Screening Study Group.
Rotterdam Family Cancer Clinic, Department of Medical Oncology, Erasmus Medical Center-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands.
BACKGROUND: The value of regular surveillance for breast cancer in women with a genetic or familial predisposition to breast cancer is currently unproven. We compared the efficacy of magnetic resonance imaging (MRI) with that of mammography for screening in this group of high-risk women. METHODS: Women who had a cumulative lifetime risk of breast cancer of 15 percent or more were screened every six months with a clinical breast examination and once a year by mammography and MRI, with independent readings. The characteristics of the cancers that were detected were compared with the characteristics of those in two different age-matched control groups. RESULTS: We screened 1909 eligible women, including 358 carriers of germ-line mutations. Within a median follow-up period of 2.9 years, 51 tumors (44 invasive cancers, 6 ductal carcinomas in situ, and 1 lymphoma) and 1 lobular carcinoma in situ were detected. The sensitivity of clinical breast examination, mammography, and MRI for detecting invasive breast cancer was 17.9 percent, 33.3 percent, and 79.5 percent, respectively, and the specificity was 98.1 percent, 95.0 percent, and 89.8 percent, respectively. The overall discriminating capacity of MRI was significantly better than that of mammography (P<0.05). The proportion of invasive tumors that were 10 mm or less in diameter was significantly greater in our surveillance group (43.2 percent) than in either control group (14.0 percent [P<0.001] and 12.5 percent [P=0.04], respectively). The combined incidence of positive axillary nodes and micrometastases in invasive cancers in our study was 21.4 percent, as compared with 52.4 percent (P<0.001) and 56.4 percent (P=0.001) in the two control groups. CONCLUSIONS: MRI appears to be more sensitive than mammography in detecting tumors in women with an inherited susceptibility to breast cancer. Copyright 2004 Massachusetts Medical Society
Here's the abstract from the original study:
Breast-feeding and the risk of breast cancer in BRCA1 and BRCA2 mutation carriers.
Jernstrom H, Lubinski J, Lynch HT, Ghadirian P, Neuhausen S, Isaacs C, Weber BL, Horsman D, Rosen B, Foulkes WD, Friedman E, Gershoni-Baruch R, Ainsworth P, Daly M, Garber J, Olsson H, Sun P, Narod SA.
Jubileum Institute, Department of Oncology, Lund University Hospital, Lund, Sweden.
BACKGROUND: Several studies have reported that the risk of breast cancer decreases with increasing duration of breast-feeding. Whether breast-feeding is associated with a reduced risk of hereditary breast cancer in women who carry deleterious BRCA1 and BRCA2 mutations is currently unknown. METHODS: We conducted a case-control study of women with deleterious mutations in either the BRCA1 or the BRCA2 gene. Study participants, drawn from an international cohort, were matched on the basis of BRCA mutation (BRCA1 [n = 685] or BRCA2 [n = 280]), year of birth (+/-2 years), and country of residence. The study involved 965 case subjects diagnosed with breast cancer and 965 control subjects who had no history of breast or ovarian cancer. Information on pregnancies and breast-feeding practices was derived from a questionnaire administered to the women during the course of genetic counseling. Conditional logistic regression analyses were used to estimate odds ratios (ORs) for the risk of breast cancer. All statistical tests were two-sided. RESULTS: Among women with BRCA1 mutations, the mean total duration of breast-feeding was statistically significantly shorter for case subjects than for control subjects (6.0 versus 8.7 months, respectively; mean difference = 2.7 months, 95% confidence interval [CI] = 1.4 to 4.0; P<.001). The total duration of breast-feeding was associated with a reduced risk of breast cancer (for each month of breast-feeding, OR = 0.98, 95% CI = 0.97 to 0.99; P(trend)<.001). Women with BRCA1 mutations who breast-fed for more than 1 year were less likely to have breast cancer than those who never breast-fed (OR = 0.55, 95% CI = 0.38 to 0.80; P =.001), although no such association was seen for BRCA2 (OR = 0.95, 95% CI = 0.56 to 1.59; P =.83). CONCLUSIONS: Women with deleterious BRCA1 mutations who breast-fed for a cumulative total of more than 1 year had a statistically significantly reduced risk of breast cancer.