advanced search
login vdiv resource vdiv donate vdiv merchandise vdiv contact-us
bullet
Home Page > Community > Profile
Profile
The data presented on this page is a dynamic and up-to-the-minute profile of the YSC constituency. The statistics are compiled using information provided by the breast cancer survivors who registered or who updated their information at www.youngsurvival.org on or after September 26, 2005, the date of our website relaunch.

Upon relaunching the site, we enhanced and expanded the questionnaire that registrants must complete, therefore the data collected prior to the relaunch has been kept separate from the more comprehensive data collected more recently. To see a snapshot of the YSC constituency on the day of the conversion, click here.

If you've already registered on the site, please update your record by clicking here, so that your current information is reflected on this page as part of the evolving YSC constituency.

All information is self-reported.
Información demográfica
Raza/Grupo étnico:
India americana o nativa de Aaska (15) 0.21%
Asiatíca o de las islas del Pacífico (205) 2.9%
Negra (294) 4.16%
Hispana/Latina (246) 3.48%
Blanca (4294) 60.79%
Otra (180) 2.55%
No Answer Given (1845) 26.12%
Sexo:
Femenino (2071) 29.32%
Masculino (8) 0.11%
Transexual (0) 0%
No Answer Given (4985) 70.57%
Orientación sexual:
Bisexual (37) 0.52%
Heterosexual (2532) 35.84%
Lesbiana/gay (31) 0.44%
Homosexual (6) 0.08%
No Answer Given (4458) 63.11%
Relación de pareja - estado civil:
Divorciada (337) 4.77%
Casada (3498) 49.52%
Concubinato (354) 5.01%
Separada (89) 1.26%
Soltera (869) 12.3%
Viuda (27) 0.38%
No Answer Given (1890) 26.76%
Diagnosis Information
Age at Diagnosis
18 Years of age and below (14) 0.2%
19 to 25 (222) 3.14%
26 to 30 (809) 11.45%
31 to 35 (1539) 21.79%
36 to 40 (1448) 20.5%
No Answer Given (3032) 42.92%
How Cancer was Found
Accidentalmente detectó un nódulo o anormalidad (2889) 40.9%
Mamograf'ia (590) 8.35%
Resonancia Magnética (MRI) (37) 0.52%
Secreción del pezón (117) 1.66%
Examen clínico del seno efectuado por el Ginecólogo/Obstetra (188) 2.66%
Compañero/Esposo (209) 2.96%
Examen clínico del seno efectuado por el médico de cabecera (109) 1.54%
Autoexamen del seno efectuado con regularidad(604) 8.55%
Ultrasonido(79) 1.12%
Otro (286) 4.05%
No Answer Given (1956) 27.69%
Tipo de diagnóstico inicial:
CDIS (996) 14.1%
Ductal infiltrante (2561) 36.25%
Inflamatorio (139) 1.97%
Lobular invasivo (406) 5.75%
CLIS (80) 1.13%
Enfermedad de Paget (19) 0.27%
Otro (551) 7.8%
No Answer (2312) 32.73%
Estadío en el momento del diagnóstico:
Estadío 0 (362) 5.12%
Estadío I (1206) 17.07%
Estadío IIA (1090) 15.43%
Estadío IIB (828) 11.72%
Estadío IIIA (577) 8.17%
Estadío IIIB (264) 3.74%
Estadío IV (177) 2.51%
No Answer Given (2338) 33.1%
Tumor Size
Less than 2cm (1561) 22.1%
2 to 5cm (878) 12.43%
More than 5cm (452) 6.4%
No Tumor Detected (348) 4.93%
No Answer Given (3825) 54.15%
Hormone and Her2 Status
Receptivo al estrógeno negativo (1425) 20.17%
Receptivo al estrógeno positivo (2880) 40.77%
HER-2/neu negativo(2136) 30.24%
HER-2/neu positivo(1189) 16.83%
Receptivo a la progesterona negativo(1429) 20.23%
Receptivo a la progesterona positivo (1682) 23.81%
No Answer Given - (2627) 37.19%
Información sobre el tratamiento
Surgery
Masectomía doble (1204) 17.04%
Lumpectomía (2055) 29.09%
Masectomía radical modificada (1381) 19.55%
Masectomía parcial (341) 4.83%
Masectomía profiláctica (352) 4.98%
Otra (261) 3.69%
No Surgery (346) 4.9%
No Answer Given (1124) 15.91%
Lymph Node Involvement
Sí (2268) 32.11%
No (2297) 32.52%
No Answer Given (2499) 35.38%
Lymph Node Dissection Type
Axillary (2648) 37.49%
Sentinel (2081) 29.46%
None (361) 5.11%
No Answer Given (1974) 27.94%
Radiation Therapy
Sí (2321) 32.86%
No (2256) 31.94%
No Answer Given (2487) 35.21%
Chemotherapy
Sí (2916) 41.28%
No (861) 12.19%
No Answer Given (3287) 46.53%
Dose Dense Chemotherapy
Sí (1493) 21.14%
No (2517) 35.63%
No Answer Given (3054) 43.23%
Neoadjuvant Chemotherapy
Sí (1142) 16.17%
No (2768) 39.18%
No Answer Given (3154) 44.65%
Hormone Therapy
Sí (1377) 19.49%
No (2009) 28.44%
No Answer Given (3678) 52.07%
Condición actual de la enfermedad:
Avanzada/metastásica (324) 4.59%
En tratamiento (1640) 23.22%
Recurrencia local (98) 1.39%
Nuevo primario (152) 2.15%
No evidencia de enfermedad (1102) 15.6%
No Answer Given (3748) 53.06%
Clinical Trial Participation
Sí (506) 7.16%
No Answer Given (6558) 92.84%
Reconstruction
Breast Reconstruction
Sí (2375) 33.62%
No (1333) 18.87%
No Answer Given (3356) 47.51%
Type of Breast Reconstruction
Colgajo DIEP (213) 3.02%
Colgajo anterolateral (164) 2.32%
Implantes de solución salina (606) 8.58%
Implantes de Silicona (993) 14.06%
Colgajo TRAM (484) 6.85%
Other (6) 0.08%
No Answer (4598) 65.09%
Fertility/Pregnancy/Children
Children
Average Number of Children Born Pre-Diagnosis: 1.1
Average number of Children Born Post-Diagnosis: 0.4
None: (1703) 24.11%
No Answer Given (2116) 29.95%
Diagnosed During Pregnancy
Sí (217) 3.07%
No (4390) 62.15%
No Answer (2457) 34.78%
Difficulty Conceiving After Breast Cancer Diagnosis
Sí (257) 3.64%
No (125) 1.77%
Not applicable (4174) 59.09%
No Answer (2508) 35.5%
Currently Trying to Conceive
Sí (153) 2.17%
No (4540) 64.27%
No Answer (2371) 33.56%
Currently Pregnant
Sí (70) 0.99%
No (4906) 69.45%
No Answer (2088) 29.56%
Adopted Children Post-Diagnosis
Sí (46) 0.65%
No (4580) 64.84%
No Answer (2438) 34.51%
Premature Menopause
Sí (1840) 26.05%
No (2120) 30.01%
No Answer Given (3104) 43.94%
Historia familiar y genética
Family Members Diagnosed with Breast Cancer
Propio (2572) 36.41%
Hermano (177) 2.51%
Hermana (130) 1.84%
Madre (635) 8.99%
Padre (22) 0.31%
Padre o madre de la madre (786) 11.13%
Padre o madre del padre (645) 9.13%
Primo(a)(s) (346) 4.9%
Hija (101) 1.43%
Hijo (0) 0%
Otro (778) 11.01%
No Answer (872) 12.34%
Any of the Above Diagnosed Before Age 50
Sí (3014) 42.67%
No (912) 12.91%
No Answer Given (3138) 44.42%
Family Members Diagnosed with Cancer other than Breast Cancer
Propio (254) 3.6%
Hermano (80) 1.13%
Hermana (125) 1.77%
Madre (424) 6%
Padre (681) 9.64%
Padre o madre de la madre (1242) 17.58%
Padre o madre del padre (1028) 14.55%
Primo(a)(s) (452) 6.4%
Hija (5) 0.07%
Hijo (5) 0.07%
Otro (637) 9.02%
No Answer (2131) 30.17%
Any of the Above Diagnosed Before Age 50
Sí (1433) 20.29%
No (1672) 23.67%
No Answer Given (3959) 56.04%
Family Member Has Tested Positive for a Genetic Mutation or Hereditary Cancer Syndrome
Sí (348) 4.93%
No (3036) 42.98%
No Answer Given (3680) 52.1%
Personal History
Referred for Genetic Counseling or Testing
Sí (2370) 33.55%
No (1306) 18.49%
No Answer Given (3388) 47.96%
Chose to be tested for Genetic Mutation or Hereditary Cancer Syndrome
Sí (2370) 33.55%
No (1306) 18.49%
No Answer Given (3388) 47.96%
Specialty of the Practitioner that Performed Genetic Testing
Consultor Genético Certificado (1321) 18.7%
Oncológo Médico (472) 6.68%
Enfermera (121) 1.71%
Otra especialidad médica (47) 0.67%
Cirujano (193) 2.73%
No Genetic Counseling Received (1178) 16.68%
No Answer Given (3732) 52.83%
Results of Hereditary Breast/ Ovarian Cancer Syndrome (BRCA 1/2) Test
Negativo (1063) 15.05%
Positivo (212) 3%
Desconozco (212) 3%
No Answer Given (5789) 81.95%
Results of Cowden Syndrome (PTEN) Test
Negativo (126) 1.78%
Positivo (126) 1.78%
Desconozco (401) 5.68%
No Answer Given (6537) 92.54%
Results of Li Fraumeni (TP53) Test
Negativo (109) 1.54%
Positivo (109) 1.54%
Desconozco (397) 5.62%
No Answer Given (6558) 92.84%
Actions Taken Based on Family History, Genetic Counseling or Testing
Inscripción en clinica de alto riesgo (70) 0.99%
Autoexamen de seno/concientización mensuales (951) 13.46%
Masectomía profiláctica (470) 6.65%
Ooforectomía profiláctica (301) 4.26%
Análisis de sangre con regularidad (CA125, etc) (522) 7.39%
Resonancia magnética del seno con reguaridad (321) 4.54%
Ultrasonido de seno con regularidad (294) 4.16%
Colonoscopía con regularidad (161) 2.28%
Mamografías con regularidad (831) 11.76%
Ultrasonidos vaginales con regularidad (254) 3.6%
No Answer Given (2889) 40.9%
aaa
Copyright 2005-2008 Young Survival Coalition. All rights reserved.