How Patients and Their Doctors Determine Cancer Risk—and What Happens Next


Date Posted, by Goli Samimi, Ph.D., M.P.H.

If you were concerned that you might be at increased risk for a specific kind of cancer, what would you do to confirm that risk, and what would you be willing to do to reduce that risk? The answer is likely to be, "it depends on your doctor."

Quotes from Focus Group Participants

"The claim of cancer preventing or cancer curing drugs have long been in the realm of the National Enquirer…I just haven’t seen anything, and I’m 63, in my life that will prevent or cure cancer. … I think as smokers, it’s natural that we hold out the possibility that there will be a drug that comes by and saves us, like the white knight, but I just don’t think that’s in the cards."

– Man at increased risk of head/neck/oral and lung cancer

“If we're talking about a medication that is preventative, how do you monitor that? I'm not somebody who has ever taken any kind of a test. I know that there are DNA-like tests to see what your risk factor is. But if I haven't already been diagnosed with cancer and I'm just taking a preventative medication, how do I know that the inhaler is working to prevent me from getting lung cancer?”

– Woman with average risk for head/neck/oral and lung cancers

The ability to identify individuals at higher risk of cancer has significantly improved with technological and medical advances such as genetic testing and improved identification of precursor lesions. Individuals at higher risk for cancer are good candidates to potentially benefit from prevention interventions, including chemopreventive agents and risk-reducing surgery. However, studies have shown that acceptability, uptake, and adherence to preventive interventions is low, even among those at high risk of developing cancer.1

Image of clinician's hands typing on laptop on office desk from above.

To better understand the factors that affect someone’s willingness to use a cancer preventive intervention, we conducted 36 focus groups with 198 individuals at regular risk or high risk for breast/ovarian, gynecologic and head/neck/oral/lung cancers.2 The participants in the high-risk focus groups were selected based on the presence of cancer-specific risk factors such as carrying a genetic mutation, being diagnosed with a precursor lesion, or being a heavy smoker. The focus group discussions revealed the perceptions that affect the participants’ willingness to use cancer prevention interventions including perceived risk, skepticism of effectiveness, and a reliance on physician input during the decision-making process.

Focus group participants also discussed considerations related to the specific preventive interventions that would affect their willingness to use it. Some of these considerations include: convenience of use within daily routine (for example, pairing it every morning with brushing teeth); severity and duration of side effects (ranging from an unpleasant taste to medical side effects like blood clots); concern over application process (for example, a sticky or smelly residue); and invasiveness of intervention and involvement of healthcare provider for application or intervention (which was perceived to be more effective).

Overall, the willingness of participants to use cancer preventive interventions is influenced by perceived risk of cancer, skepticism/perception of effectiveness, regimen and side effects. All of these have a heavy reliance on physician input and understanding. In parallel, many clinical guidelines recommend that women who are concerned about their risk for breast/ovarian cancer seek guidance from their primary care physicians for risk assessment and clinical management.

Survey of Physicians

Because of this reliance on physician recommendations, we next wanted to evaluate the perceptions of primary care physicians with respect to cancer prevention. We conducted a web-based survey of 750 primary care physicians (250 each for OB/GYN, internal medicine and family medicine) to better understand their knowledge of breast and ovarian cancer risk factors, their familiarity, attitude, use and prescribing behaviors of cancer prevention interventions, and their ability to apply recommendation guidelines.3,4

More Quotes from Focus Group Participants

"I think that if I did the cream and I started to notice that I was having effects, it's easier for me to just stop the cream versus having to go to the doctor if I feel like I'm having effects from the insert to have to go to the doctor to have the insert removed. I just think it gives me more control.”

– Woman at increased risk of gynecologic cancers

“Whether it’s a pill, or an inhaler, or mouthwash, or whatever, it wouldn’t matter. What is my risk, am I high risk? And the side effects for it. I think that’s the main thing I would watch out for and be concerned about.”

– Woman with average risk of head/neck/oral and lung cancer

Primary care physicians recognized most genetic or hereditary risk factors such as a specific genetic mutation like BRCA1/2 but were less likely to recognize lifestyle or clinical risk factors such as hormone use or pregnancy. The survey responses also showed that primary care physicians were more likely to use more traditional risk assessment or screening tools like discussion of family history or mammograms, but less likely to use genetic testing as a risk assessment tool. Interestingly, the responses showed that primary care physicians being familiar with cancer preventive interventions was related to their attitudes toward the risks and benefits of the interventions.

We also wanted to assess how primary care physicians would apply standard of care recommendations from medical societies when met with patients at different risks for breast/ovarian cancer. We developed hypothetical cases of women presenting to the primary care physicians with different risk factors and asked the survey respondents to select from a list of courses of action. For the patient at normal risk (40 years old, no family history or pre-cancer lesion), all survey respondents selected the courses of action that clinical guidelines recommend. As the hypothetical cases get more complicated with increased risk factors like family history, a BRCA genetic mutation and/or a pre-cancer lesion, the number of primary care physicians who selected the recommended courses of action decreased.

Patients rely heavily on their primary care physicians for recommendation and decisions related to cancer risk assessment and prevention, and cancer prevention information needs to be more readily integrated into primary care management. Studies to evaluate the best approach to improve risk assessment and use of cancer preventive interventions in primary care are needed.

The NCI supported a randomized controlled clinical trial assessing website-based decision aids for both patients and physicians for increasing the use of breast cancer preventive agents in primary care. This study developed a website-based patient centered decision aid called RealRisks and a BNAV toolbox for healthcare providers that will now be studied in a Phase 3 clinical trial supported by the NCI Community Oncology Research Program (NCORP) and the Southwest Oncology Group (SWOG), focusing on atypical hyperplasia of the breast or lobular breast carcinoma in situ, both diagnoses that increase risk of breast cancer. The hypothesis of the Phase 3 study is that improving accuracy of breast cancer risk perception and understanding of the risks and benefits of breast cancer preventive agents will increase the uptake of chemoprevention in the primary care setting.

In addition to supporting clinical trials evaluating decision aids, the NCI Division of Cancer Prevention is planning a roundtable meeting for Spring 2021with representatives from the Medical Societies who represent primary care physicians to better understand and facilitate the incorporation of cancer prevention into primary care management.


  1. Al Rabadi L, Bergan R. A Way Forward for Cancer Chemoprevention: Think Local. Cancer Prev Res (Phila). 2017;10:14-35.
  2. Samimi G, Heckman-Stoddard BM, Kay SS, et al. Acceptability of Localized Cancer Risk Reduction Interventions among Individuals at Average or High Risk for Cancer. Cancer Prev Res (Phila). 2019 Apr;12(4):271-282.
  3. Samimi G, Heckman-Stoddard BM, Holmberg C, et al. Cancer Prevention in Primary Care: Perception of Importance, Recognition of Risk Factors and Prescribing Behaviors. Am J Med. 2020;133:723-32.
  4. Samimi G, Heckman-Stoddard BM, Holmberg C, et al. Assessment of and Interventions for Women at High Risk for Breast or Ovarian Cancer: A Survey of Primary Care Physicians. Cancer Prev Res (Phila). 2020 Oct 6;canprevres.0407.2020. Online ahead of print.

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