Annals of Surgical Oncology

, Volume 25, Issue 5, pp 1395–1402 | Cite as

Recontacting Patients with Updated Genetic Testing Recommendations for Medullary Thyroid Carcinoma and Pheochromocytoma or Paraganglioma

  • Minerva A. Romero Arenas
  • Thereasa A. Rich
  • Samuel M. Hyde
  • Naifa L. Busaidy
  • Gilbert J. Cote
  • Mimi I. Hu
  • Robert F. Gagel
  • Paul W. Gidley
  • Camilo Jimenez
  • Michael E. Kupferman
  • Susan K. Peterson
  • Steven I. Sherman
  • Anita Ying
  • Roland L. BassettJr.
  • Steven G. Waguespack
  • Nancy D. Perrier
  • Elizabeth G. GrubbsEmail author
Endocrine Tumors



No guidelines exist regarding physicians’ duty to inform former patients about novel genetic tests that may be medically beneficial. Research on the feasibility and efficacy of disseminating information and patient opinions on this topic is limited.


Adult patients treated at our institution from 1950 to 2010 for medullary thyroid cancer, pheochromocytoma, or paraganglioma were included if their history suggested being at-risk for a hereditary syndrome but genetic risk assessment would be incomplete by current standards. A questionnaire assessing behaviors and attitudes was mailed 6 weeks after an information letter describing new genetic tests, benefits, and risks was mailed.


Ninety-seven of 312 (31.1%) eligible patients with an identified mailing address returned the questionnaire. After receiving the letter, 29.2% patients discussed genetic testing with their doctor, 39.3% considered pursuing genetic testing, and 8.5% underwent testing. Nearly all respondents (97%) indicated that physicians should inform patients about new developments that may improve their or their family’s health, and 71% thought patients shared this responsibility. Most patients understood the letter (84%) and were pleased it was sent (84%), although 11% found it upsetting.


Patients believe it is important for physicians to inform them of potentially beneficial developments in genetic testing. However, physician-initiated letters to introduce new information appear inadequate alone in motivating patients to seek additional genetic counseling and testing. Further research is needed regarding optimal methods to notify former patients about new genetic tests and corresponding clinical and ethical implications.



The authors acknowledge the National Society of Genetic Counselors Cancer Special Interest Group for their generous funding for this project. This work was supported in part by the American Cancer Society Mentored Grant “Identifying key factors affecting the clinical course of MEN2-related MTC.”


Steven I. Sherman is a consultant for LOXO, Novartis, Veracyte, NovoNordisk, Genzyme, Bristol-Myers Squibb, Eisai Medical Research. The remaining authors have no financial disclosures to make.

Supplementary material

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Supplementary material 1 (PDF 266 kb)
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Supplementary material 2 (PDF 266 kb)
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Supplementary material 3 (PDF 720 kb)
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Supplementary material 4 (PDF 716 kb)


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Copyright information

© Society of Surgical Oncology 2018

Authors and Affiliations

  • Minerva A. Romero Arenas
    • 1
  • Thereasa A. Rich
    • 1
  • Samuel M. Hyde
    • 2
  • Naifa L. Busaidy
    • 3
  • Gilbert J. Cote
    • 3
  • Mimi I. Hu
    • 3
  • Robert F. Gagel
    • 3
  • Paul W. Gidley
    • 4
  • Camilo Jimenez
    • 3
  • Michael E. Kupferman
    • 4
  • Susan K. Peterson
    • 5
  • Steven I. Sherman
    • 3
  • Anita Ying
    • 3
  • Roland L. BassettJr.
    • 6
  • Steven G. Waguespack
    • 3
  • Nancy D. Perrier
    • 1
  • Elizabeth G. Grubbs
    • 1
    Email author
  1. 1.Department of Surgical OncologyThe University of Texas MD Anderson Cancer CenterHoustonUSA
  2. 2.Department of Clinical Cancer GeneticsThe University of Texas MD Anderson Cancer CenterHoustonUSA
  3. 3.Department of Endocrine Neoplasia & Hormonal DisordersThe University of Texas MD Anderson Cancer CenterHoustonUSA
  4. 4.Department of Head & Neck SurgeryThe University of Texas MD Anderson Cancer CenterHoustonUSA
  5. 5.Department of Behavioral ScienceThe University of Texas MD Anderson Cancer CenterHoustonUSA
  6. 6.Department of BiostatisticsThe University of Texas MD Anderson Cancer CenterHoustonUSA

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