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PubMed This is a summary of 15 peer-reviewed journal articles Updated
Genetic Counseling

Building Your Care Team and Preparing for Appointments

At a Glance

Managing Hereditary Breast and Ovarian Cancer (HBOC) requires a multidisciplinary team of genetic counselors, oncologists, and specialized surgeons. To prepare for your first appointment, gather a detailed three-generation family history including cancer types and ages of diagnosis.

Managing HBOC is not a solo journey, nor is it a task for just one doctor. Because this syndrome affects multiple organ systems and carries lifelong implications, the most effective care happens within a multidisciplinary team (MDT)—a group of specialists who work together to create a personalized roadmap for your health [1][2].

Building Your Specialist Team

Your care team should include experts who specialize not just in cancer, but specifically in hereditary cancer syndromes. Depending on your mutation and risks, your team may include:

  • Genetic Counselor (GC): Your first point of contact. They analyze your family tree (pedigree), help you choose the right tests, and explain what the results mean for you and your family [3][4].
  • Medical Oncologist: If you have a cancer diagnosis, they manage your overall treatment, including targeted therapies like PARP inhibitors [5][6].
  • Breast Surgeon: An expert in both high-risk surveillance and risk-reducing surgeries like mastectomies [7][8].
  • Gynecologic Oncologist: A specialist focused on the health of the ovaries and fallopian tubes; they perform risk-reducing surgeries (RRSO) [1][8].
  • Gastroenterologist or Urologist: May be added to the team to monitor pancreatic or prostate cancer risks [7].
  • Psychosocial Support: Counselors or therapists who specialize in the emotional impact of genetic risk and “previvorship” [9][10].

Preparing for Your First Appointment

The most important tool you can bring to your appointment is a clear picture of your family history. Geneticists look for patterns across at least three generations [3][7].

What to Gather

For your parents, siblings, children, grandparents, aunts, uncles, and cousins on both sides of the family, try to find:

  • Exact Cancer Types: Was it breast cancer or ovarian? Pancreatic or colon? Specificity matters [3].
  • Age at Diagnosis: Knowing a relative was diagnosed at 35 vs. 75 changes the risk assessment significantly [3][11].
  • Genetic Test Results: If a relative has already tested positive for a mutation, bring a copy of their lab report [3].
  • Pathology Details: If known, find out if a relative’s breast cancer was “triple-negative” or if they had specific tumor markers [7].

Evaluating Your Care Team

Not all oncologists or surgeons are experts in high-risk genetics. You are looking for a team that provides long-term, longitudinal care rather than just a one-time test [12][10].

Indicators of Expertise

  • NCI Designation: Centers designated by the National Cancer Institute (NCI) often have high-volume expertise and access to the latest clinical trials.
  • Board Certification: Ensure your genetic counselor is board-certified (CGC) and your surgeons are fellowship-trained in oncology [3].
  • Integrated Care: Look for “High-Risk Clinics” where specialists meet regularly (often called a “Tumor Board”) to discuss and coordinate patient care [13][2].
  • Family Resources: An expert team will offer support for cascade testing, providing you with resources to help your at-risk relatives get tested [14][15].

Common questions in this guide

Which specialists should be on my HBOC care team?
Your care team should ideally include a genetic counselor, medical oncologist, breast surgeon, and gynecologic oncologist. Depending on your specific genetic risks, you may also benefit from a gastroenterologist, urologist, and psychosocial support counselor.
How should I prepare for my first appointment with a genetics expert?
You should gather a detailed health history for at least three generations on both sides of your family. Focus on finding out the exact types of cancer your relatives had, their ages at diagnosis, and any previous genetic test results or pathology reports.
What is a high-risk cancer clinic?
A high-risk clinic is a specialized center where a team of experts collaborates to provide comprehensive, long-term care for individuals with genetic cancer syndromes. These centers often hold tumor boards where specialists discuss and coordinate personalized care plans.
How do I know if my doctor is an expert in hereditary cancer?
You can evaluate expertise by looking for National Cancer Institute (NCI) designation, board-certified genetic counselors, and fellowship-trained oncology surgeons. It is also highly recommended to ask your doctor directly how many patients with your specific mutation they manage each year.

Questions for Your Doctor

5 questions

  • •How many patients with my specific gene mutation do you manage in your practice each year?
  • •Is there a dedicated High-Risk Clinic or a hereditary cancer program at this facility?
  • •Do you work directly with a board-certified genetic counselor to review my test results and family history?
  • •Does your team hold multidisciplinary 'tumor boards' where specialists like surgeons and oncologists discuss cases like mine?
  • •How do you stay updated on the rapidly changing NCCN guidelines for hereditary cancer management?

Questions for You

3 questions

  • •Do I have a written record of the exact types of cancer and ages at diagnosis for my parents, siblings, children, aunts, uncles, and grandparents?
  • •Am I looking for a one-time consultation, or do I want a medical home that will manage my long-term screenings and care?
  • •How comfortable do I feel asking my relatives for more details about their health history or their previous genetic test results?

References

References (15)
  1. 1

    Next-Generation Gene Sequencing: Looking Beyond Hereditary Breast and Ovarian Cancer.

    Estrada SS, LeGrazie B, McKamie T, Montgomery S

    Oncology nursing forum 2015; (42(6)):691-4 doi:10.1188/15.ONF.691-694.

    PMID: 26488839
  2. 2

    Genetic testing for patients at risk of hereditary breast and ovarian cancer.

    DeTroye A, Gabbett K, Yi C, et al.

    JAAPA : official journal of the American Academy of Physician Assistants 2022; (35(10)):48-52 doi:10.1097/01.JAA.0000873796.81961.da.

    PMID: 36165549
  3. 3

    Pedigree and BRCA gene analysis in breast cancer patients to identify hereditary breast and ovarian cancer syndrome to prevent morbidity and mortality of disease in Indian population.

    Darooei M, Poornima S, Salma BU, et al.

    Tumour biology : the journal of the International Society for Oncodevelopmental Biology and Medicine 2017; (39(2)):1010428317694303 doi:10.1177/1010428317694303.

    PMID: 28231738
  4. 4

    CDC Grand Rounds: Family History and Genomics as Tools for Cancer Prevention and Control.

    Rodriguez JL, Thomas CC, Massetti GM, et al.

    MMWR. Morbidity and mortality weekly report 2016; (65(46)):1291-1294 doi:10.15585/mmwr.mm6546a3.

    PMID: 27880748
  5. 5

    BRCA mutated pancreatic cancer: A change is coming.

    Rosen MN, Goodwin RA, Vickers MM

    World journal of gastroenterology 2021; (27(17)):1943-1958 doi:10.3748/wjg.v27.i17.1943.

    PMID: 34007132
  6. 6

    Exploring Breast Cancer Risk Management in HBOC Patients: Image Surveillance Versus Risk-reducing Surgery.

    Seki T, Kobayashi Y, Masuda K, et al.

    The Keio journal of medicine 2025; (74(3)):130-137 doi:10.2302/kjm.2024-0021-RE.

    PMID: 40175132
  7. 7

    Risk assessment and genetic counseling for hereditary breast and ovarian cancer syndromes-Practice resource of the National Society of Genetic Counselors.

    Berliner JL, Cummings SA, Boldt Burnett B, Ricker CN

    Journal of genetic counseling 2021; (30(2)):342-360 doi:10.1002/jgc4.1374.

    PMID: 33410258
  8. 8

    BRCA1/2 mutations and risk-reducing bilateral salpingo-oophorectomy among Latinas: The UPTAKE study.

    Lynce F, Schlam I, Geng X, et al.

    Journal of genetic counseling 2021; (30(2)):383-393 doi:10.1002/jgc4.1322.

    PMID: 33010199
  9. 9

    How does genetic testing influence anxiety, depression, and quality of life? A hereditary breast and ovarian cancer syndrome suspects trial.

    Oliveira FFB, de Barros Silva PG, de Sant'Ana RO, et al.

    Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 2021; (29(7)):3521-3530 doi:10.1007/s00520-020-05867-2.

    PMID: 33155091
  10. 10

    "I have always lived with the disease in the family": family adaptation to hereditary cancer-risk.

    Silva E, Gomes P, Matos PM, et al.

    BMC primary care 2022; (23(1)):93 doi:10.1186/s12875-022-01704-z.

    PMID: 35461227
  11. 11

    Population prevalence of individuals meeting criteria for hereditary breast and ovarian cancer testing.

    Greenberg S, Buys SS, Edwards SL, et al.

    Cancer medicine 2019; (8(15)):6789-6798 doi:10.1002/cam4.2534.

    PMID: 31531966
  12. 12

    Hereditary Cancer Syndrome Carriers: Feeling Left in the Corner.

    Diez de Los Rios de la Serna C, Lluch-Canut MT, Fernández-Ortega MP

    Seminars in oncology nursing 2024; (40(3)):151624 doi:10.1016/j.soncn.2024.151624.

    PMID: 38575458
  13. 13

    Expanding the Genomic Landscape of HBOC and Cancer Risk Among Mutation Carriers.

    Vietri MT, Della Pepa C, Caliendo G, et al.

    International journal of molecular sciences 2025; (26(13)) doi:10.3390/ijms26135928.

    PMID: 40649708
  14. 14

    Factors affecting the implementation of cascade testing of patients with BRCA1 or BRCA2 pathogenic germline variants in Japan.

    Kiyozumi Y, Nishimura S, Kado N, et al.

    Journal of genetic counseling 2025; (34(3)):e70055 doi:10.1002/jgc4.70055.

    PMID: 40361302
  15. 15

    Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis.

    Baroutsou V, Underhill-Blazey ML, Appenzeller-Herzog C, Katapodi MC

    Cancers 2021; (13(4)) doi:10.3390/cancers13040925.

    PMID: 33672149

This page provides educational information on building a care team for hereditary cancer risk. It is not intended to replace professional medical advice, diagnosis, or treatment from your physician or genetic counselor.

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