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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Oncology

Building Your Care Team: Why Experts Matter

At a Glance

Because Hereditary Diffuse Gastric Cancer is rare, it is crucial to receive care at a high-volume expert center. A specialized multidisciplinary team—including genetic counselors, expert surgeons, gastroenterologists, and dietitians—ensures the safest outcomes for surgery and long-term screening.

Because Hereditary Diffuse Gastric Cancer (HDGC) is rare, most local doctors may only see one or two cases in their entire career. To manage this condition safely, it is critical to seek care at a high-volume expert center [1][2]. In these settings, specialists work together as a Multidisciplinary Team (MDT) to ensure that no detail is missed [3][4].

To start your search, look for NCI-designated cancer centers or consult patient advocacy organizations like No Stomach For Cancer.

Why High-Volume Centers Matter

Studies show that patients who have complex surgeries like a total gastrectomy at high-volume centers have better outcomes, including fewer complications and shorter hospital stays [2]. These centers have the specialized equipment and the experienced staff—from surgeons to nurses—who know exactly how to handle the unique needs of someone without a stomach [5].

Your Care Team “All-Stars”

A complete HDGC team should include several key specialists, each with a specific role in your care [6][3]:

  1. Genetic Counselor: The “architect” of your journey. They help you understand your mutation and talk to your family members about testing. They also help you navigate reproductive options. For example, if you are planning a family, they can discuss Preimplantation Genetic Testing (PGT-M) via IVF, which allows you to ensure the mutation is not passed to your children [7][8].
  2. Surgical Oncologist: A surgeon specializing in cancer who has extensive experience with prophylactic total gastrectomy. They don’t just perform the surgery; they manage the complex reconstruction of your digestive tract [9][1].
  3. Specialized Gastroenterologist (GI): This doctor must be an expert in the Cambridge Protocol. They should use high-definition cameras and special dyes (chromoendoscopy) to hunt for microscopic signet ring cells [10][11].
  4. Registered Dietitian (RD): Your lifelong partner in nutrition. They will teach you how to eat in a “new normal,” manage dumping syndrome, and monitor your vitamin levels (like B12 and Iron) [3][12].
  5. Pathologist: The “detective” behind the scenes. They must be trained to find tiny, microscopic cancer foci in the tissue samples taken during your endoscopy or after surgery [13][14].

Evaluating Your Team

When you meet with potential doctors, do not be afraid to ask direct questions about their experience. A true expert will welcome your engagement.

  • For the Surgeon: “How many prophylactic (preventative) gastrectomies do you do each year for CDH1/CTNNA1 carriers?” (You are looking for a surgeon who performs this regularly, not just once or twice a year) [2].
  • For the GI: “Do you use the Cambridge Protocol, and how many random and targeted biopsies do you typically take?” (The answer should be at least 30) [10].
  • For the Pathologist: “Do you follow the IGCLC protocol for ‘total embedding’ of the gastrectomy specimen?” (This means they look at the entire stomach under a microscope, not just small pieces) [14].

The Power of the Team

A specialized team does more than provide medical procedures; they provide a safety net. They ensure that your physical recovery is matched by psychosocial support, helping you navigate the emotional challenges of living with a high-risk mutation [15][16]. You are the center of this team, and having the right experts around you transforms a frightening diagnosis into a manageable plan [4].

Back to the start: Home Page

Common questions in this guide

Why do I need to go to a high-volume center for HDGC?
High-volume centers have multidisciplinary teams with extensive experience managing rare conditions like HDGC. Studies show that patients undergoing complex surgeries, such as prophylactic total gastrectomy, at these centers experience fewer complications and shorter hospital stays.
What specialists should be on my HDGC care team?
Your care team should include a genetic counselor, a surgical oncologist experienced in total gastrectomies, a specialized gastroenterologist, a registered dietitian, and a specialized pathologist. Together, they manage your genetic screening, surgery, and long-term recovery.
How should a gastroenterologist screen for HDGC?
Your gastroenterologist should use the Cambridge Protocol during your endoscopy. This involves taking at least 30 random and targeted biopsies and using high-definition cameras with special dyes to find microscopic cancer cells.
What is the role of a dietitian after a preventative gastrectomy?
A registered dietitian helps you adapt to eating without a stomach. They will guide you in managing complications like dumping syndrome and closely monitor your vitamin levels, such as B12 and iron, to prevent deficiencies.
How can I make sure I am choosing the right surgeon for a gastrectomy?
Ask potential surgeons how many prophylactic total gastrectomies they perform each year specifically for CDH1 or CTNNA1 mutation carriers. You want a surgeon who performs this complex procedure regularly, not just once or twice a year.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many prophylactic total gastrectomies has this surgeon personally performed, and what is the center's annual volume for this specific procedure?
  2. 2.Does your gastroenterologist follow the full 30-biopsy 'Cambridge Protocol' using high-definition white-light and dye-based chromoendoscopy?
  3. 3.Will the pathology team examine the entire removed stomach in its entirety (using total embedding) to search for microscopic signet ring cell foci?
  4. 4.Does the team include a registered dietitian who has a specific focus on post-gastrectomy nutrition and long-term vitamin management?
  5. 5.Is there a designated coordinator or genetic counselor who manages the communication between all the different specialists on my team?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (16)
  1. 1

    Hereditary diffuse gastric cancer: updated clinical practice guidelines.

    Blair VR, McLeod M, Carneiro F, et al.

    The Lancet. Oncology 2020; (21(8)):e386-e397 doi:10.1016/S1470-2045(20)30219-9.

    PMID: 32758476
  2. 2

    Associations of centralization with health care quality for gastric cancer patients receiving gastrectomy in China.

    Ji J, Shi L, Ying X, et al.

    Chinese journal of cancer research = Chung-kuo yen cheng yen chiu 2021; (33(6)):659-670 doi:10.21147/j.issn.1000-9604.2021.06.03.

    PMID: 35125810
  3. 3

    Emerging Adults Carrying a CDH1 Pathogenic or Likely Pathogenic Variant Face Diet and Lifestyle Challenges after Total Gastrectomy.

    Liu Y, Lopez R

    Journal of the Academy of Nutrition and Dietetics 2022; (122(5)):913-917 doi:10.1016/j.jand.2021.12.012.

    PMID: 34968751
  4. 4

    Hereditary diffuse gastric cancer in a Japanese family with CDH1 mutation three case reports.

    Muranaka F, Kise E, Tokumaru S, et al.

    Discover oncology 2023; (14(1)):14 doi:10.1007/s12672-023-00623-4.

    PMID: 36719602
  5. 5

    Lessons learned from 150 total gastrectomies for prevention of cancer.

    Gallanis AF, Bowden C, Lopez R, et al.

    Journal of gastrointestinal surgery : official journal of the Society for Surgery of the Alimentary Tract 2025; (29(1)):101889 doi:10.1016/j.gassur.2024.101889.

    PMID: 39547590
  6. 6

    Therapeutic and prophylactic gastrectomy in a family with hereditary diffuse gastric cancer secondary to a CDH1 mutation: a case series.

    Gjyshi O, Vashi P, Seewald L, et al.

    World journal of surgical oncology 2018; (16(1)):143 doi:10.1186/s12957-018-1415-5.

    PMID: 30007404
  7. 7

    Hereditary Diffuse Gastric Cancer-Update Based on the Current Consort Recommendations.

    Treese C, Siegmund B, Daum S

    Current oncology (Toronto, Ont.) 2022; (29(4)):2454-2460 doi:10.3390/curroncol29040199.

    PMID: 35448173
  8. 8

    Case series of three patients with hereditary diffuse gastric cancer in a single family: Three case reports and review of literature.

    Hirakawa M, Takada K, Sato M, et al.

    World journal of gastroenterology 2020; (26(42)):6689-6697 doi:10.3748/wjg.v26.i42.6689.

    PMID: 33268956
  9. 9

    Laparoscopic Prophylactic Total Gastrectomy for Hereditary Diffuse Gastric Cancer in CDH1 Mutation Carriers.

    Ithurralde-Argerich J, Rosner L, Rizzolo M, et al.

    Journal of laparoendoscopic & advanced surgical techniques. Part A 2021; (31(7)):729-737 doi:10.1089/lap.2021.0239.

    PMID: 34097461
  10. 10

    Endoscopic Ultrasound Has Limited Utility in Diagnosis of Gastric Cancer in Carriers of CDH1 Mutations.

    Kumar S, Katona BW, Long JM, et al.

    Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association 2020; (18(2)):505-508.e1 doi:10.1016/j.cgh.2019.04.064.

    PMID: 31077828
  11. 11

    Endoscopic surveillance with systematic random biopsy for the early diagnosis of hereditary diffuse gastric cancer: a prospective 16-year longitudinal cohort study.

    Lee CYC, Olivier A, Honing J, et al.

    The Lancet. Oncology 2023; (24(1)):107-116 doi:10.1016/S1470-2045(22)00700-8.

    PMID: 36509094
  12. 12

    Nutritional status and related factors in gastric cancer patients after gastrectomy: a cross-sectional study.

    Muszyński T, Jędrychowski T, Witalewska A, et al.

    Polski przeglad chirurgiczny 2024; (97(2)):1-10 doi:10.5604/01.3001.0054.8165.

    PMID: 40247793
  13. 13

    Pathological features of total gastrectomy specimens from asymptomatic hereditary diffuse gastric cancer patients and implications for clinical management.

    Rocha JP, Gullo I, Wen X, et al.

    Histopathology 2018; (73(6)):878-886 doi:10.1111/his.13715.

    PMID: 30014492
  14. 14

    Deep learning for computer-assisted diagnosis of hereditary diffuse gastric cancer.

    Rasmussen SA, Arnason T, Huang WY

    Journal of pathology and translational medicine 2021; (55(2)):118-124 doi:10.4132/jptm.2020.12.22.

    PMID: 33472333
  15. 15

    Recent advances in the pathology of heritable gastric cancer syndromes.

    Gullo I, van der Post RS, Carneiro F

    Histopathology 2021; (78(1)):125-147 doi:10.1111/his.14228.

    PMID: 33382491
  16. 16

    Becoming and being a parent with an inherited predisposition to diffuse gastric cancer: A qualitative study of young adults with a CDH1 pathogenic variant.

    Tutty E, Forbes Shepherd R, Hoskins C, et al.

    Journal of psychosocial oncology 2023; (41(3)):286-302 doi:10.1080/07347332.2022.2104676.

    PMID: 35959852

This page provides educational information on assembling a multidisciplinary care team for HDGC. It is not a substitute for professional medical advice, diagnosis, or treatment from qualified healthcare providers.

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