Early experience in a breast and ovarian cancer risk management clinic in Malaysia
© Taib et al; licensee BioMed Central Ltd. 2012
Published: 12 April 2012
The discovery of BRCA1 and BRCA2 in the mid 1990’s has transformed the management of breast and ovarian cancer families. As part of the M alay sian Br east Ca ncer Genetic Study [MyBrCa], University of Malaya and CARIF have established a genetic counseling, genetic testing and risk management clinic for high-risk breast and ovarian cancer families. We studied the uptake and acceptance of screening and prophylactic surgery amongst women who carry a BRCA1 or BRCA2 mutation.
Between Jan 03 and Dec 10, a total of 384 patients in the MyBrCa Study had full sequencing and large rearrangement analysis of both BRCA1 and BRCA2 genes. Of these, 56 index patients (15%) were found to carry deleterious mutations. All patients and their relatives who carry mutations in these genes were offered follow-up in a dedicated risk management clinic. The clinic is run jointly by a consultant breast surgeon, gynae-oncologist, a genetic counselor and supported by a consultant radiologist.
Of 56 index patients, 40 (71%) chose to know their genetic test results. In addition, 18 female relatives were identified as carriers. Six had passed away. Thus, 52 female carriers are being followed-up [43 affected, 9 unaffected individuals]. Of these, 25 women or 62.5% [24 previously affected by breast cancer and 1 unaffected BRCA carriers] chose to attend a dedicated risk management clinic at University Malaya Medical Centre. Of these 24 affected women, 4 (17%) already had bilateral mastectomies for bilateral breast cancers, 5 (24%) chose to have risk reducing mastectomy (RRM), the remaining 16 (76%) chose breast surveillance [only 6 had MRI] and none took up chemoprevention with Tamoxifen. Of the 19 women who did not have previous TAHBSOs, 12 (63%) chose risk reducing salpingo-oopherectomy (RRSO).
The uptake of RRM was lower than RRSO. This study shows that although specialized risk management clinics are acceptable in a high proportion of clients, reasons for not wanting to attend a risk management clinic should be explored.
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