Although 5%–10% of patients with cancer have a hereditary, germline mutation, or familial link in the development of the disease that can predict the risk for other types of cancers, coordinated care, surveillance, and screening is often not a part of this high-risk population’s treatment plan. The Cancer Risk Management Program model is a patient-centered and preventative model that includes care given by four genetic counselors and an advanced practice RN-clinical nurse specialist (APRN-CNS). Through coordinated care, the program adheres to current nationally recommended surveillance recommendations for all organ systems at risk and addresses the needs of the whole patient.

Denise C. Musser, APRN-CNS, OCN®, ANG-BC, Kristin B. Niendorf, CGC, Mary Ahrens, CGC, Olivia Michel, CGC, Collen Wherley, CGC, and Robert D. Madoff, MD, all of the University of Minnesota, presented this program during poster session at the ONS 41st Annual Congress in San Antonio, TX. The poster was titled “Cancer Risk Management Program: Filling a Gap for High Risk Patients.” 

The program consists of the following components.

  • Referrals: Internal and external primary care physicians, surgeons, and oncologists can make referrals. Patients can also self-refer.
  • Staff: The medical director and 17 consulting physicians consult on cases and review individualized surveillance plans at weekly case conferences.
  • Genetic counseling: Genetic counselors assess family history and help patients reach decisions about appropriate and cost-effective genetic testing options.
  • APRN-CNS support: These nurses provide medical management to this high-risk population by completing assessments, navigating the system, and coordinating care with primary care physicians and multiple specialists. 
  • Care plan: Each patient receives an individualized surveillance plan based on the National Comprehensive Cancer Network (NCCN) guidelines, family history, current literature, and consultation with physicians. Follow-up appointments are made at the time of the CNS visit.

In general, patients with cancer usually have at least a 20% lifetime risk of being diagnosed with additional types of cancer because of family and personal history and cancer risk prediction models. 

The researchers conducted chart reviews of 238 patients in the clinic between January 31, 2014, and March 9, 2016, and found that 79% (n = 188) were not receiving NCCN surveillance standards prior to enrollment in this program.

Since the program has been implemented, the following early cancer findings have been detected.

  • Two cases of stage 1 ovarian cancer
  • Two high-grade breast cancers
  • One ductal carcinoma in situ
  • One case of stage 1 gastric carcinoma
  • Two pheochromocytomas
  • One case of stage 2 renal cell carcinoma
  • Precancerous conditions in the thyroid
  • Colon and kidneys
  • Multiple benign hyperplasmias

In addition, an estimated 8–10 first-degree relatives of patients involved in the program are also at heightened risk for cancer and often seek care within the program.

The researchers noted the hereditary syndromes they have seen in this program.

  • Breast and ovarian cancer syndromes (BRCA1, BRCA2)
  • Birt-Hogg-Dube syndrome
  • Cowden’s syndrome
  • Familial adenomatous polyposis
  • Juvenile polyposis syndrome
  • Li Fraumeni syndrome
  • Lynch syndrome
  • Peutz-Jeghers syndrome
  • Von Hippel-Lindau syndrome
  • Patients at higher risk for breast cancer

Musser, D.C., Niendorf, K.B., Ahrens, M., Michel, O., Wherley, C., & Madoff, R.D. (2016). Cancer risk management program: filling a gap for high risk patients. Poster presented at the ONS 41st Annual Congress, San Antonio, TX, April 28–May 1, 2016.

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