The Traveling Advocate Flies . . .and Flies . . . and Flies

“Thank you for what you said.”

“Thanks for your comments.”

Words heard over and over in elevators, hallways, and coffee breaks in the last couple of weeks, as Colorectal Cancer Coalition research advocates spoke out during research-focused meetings … appreciation expressed for the reality-based voices of patients as research gets planned and evaluated.

We’ve been busy with three different meetings in the last ten days . . . and a big one coming up.

Colon and Rectal Cancer Clinical Trials Planning Meeting

Pam McAllister and I were in Washington meeting with two of the task forces that provide input to the National Cancer Institute Gastrointestinal Cancers Steering Committee.  Pam serves on the Colon Task Force, and I am part of the Rectal/Anal Task Force.

The GI Steering Committee approves new NCI clinical trial concepts and is key to getting trials prioritized and moving ahead.  Colorectal Cancer Coalition Board Chair Nancy Roach serves on that critical committee.

The task forces met to set clinical trials priorities and goals for the next eighteen months.  There was lots of new thinking and plans for the future.  Among ideas discussed in the Rectal Task Force were:

  • The importance of clinical trials to find answers that were clinically meaningful to patients rather than just statistically significant.
  • Helping patients to balance survival and side effects as they make decisions about their care.
  • Reducing the impact of treatment on long-term side effects, including bowel function and peripheral neuropathy.
  • Making sure that the right patient gets the right treatment — chemotherapy, radiation, and surgery.
  • Including studies of genomic changes upfront in clinical trials.
  • Involving advocates.

Comparative Effectiveness Research and Cancer Genomic Medicine

I was one the stakeholders discussing whether there was enough evidence to move ahead with three different genomic tests or if more research was necessary into their value.

My particular concern was screening all colorectal cancer patients’ tumors for Lynch syndrome in order to test and protect their relatives.

Unusual for many meetings I attend was the involvement of the people who pay for health care — the Centers for Medicare and Medicaid Services (CMS) and insurers including Humana and Blue Cross and Blue Shield.  Agencies that develop guidelines for testing and treating cancer patients were also there:  National Comprehensive Cancer Network (NCCN) and Evaluation of Genomic Applications in Practice and Prevention (EGAPP).

EGAPP has developed a recommendation for Genetic testing strategies in newly diagnosed individuals with colorectal cancer aimed at reducing morbidity and mortality from Lynch syndrome in relatives.

Despite fairly good evidence that testings tumors of newly diagnosed people with colorectal cancer for potential Lynch syndrome benefits both patients and their relatives, the group felt that processes were not in place to notify relatives when Lynch syndrome was found or counsel and test those relatives at risk.

Radiation Therapy Oncology Group (RTOG)

Pam McAllister and I were back together for the RTOG meeting in San Diego where we both are members of the Patient Advocacy Committee.

Emphasis during the meeting was on Patient-Reported Outcomes or PROs as a way of evaluating and reporting treatment side effects and quality of life.

While chemotherapy and radiation toxicity in clinical trials has normally been reported by doctors and nurses conducting the trials, research shows that there is a significant difference in what patients say about their own side effects and how toxicity gets reported.  PROs may be more meaningful and accurate, particularly in helping future patients make treatment decisions.

RTOG is one of the cancer cooperative groups, funded by NCI, to conduct clinical trials.

Stay tuned for reports from the 2011 Gastrointestinal Symposium beginning on Thursday, January 18 in San Francisco.


  1. Barbara Arndt says

    I’m very happy to hear more people taling about Lynch Syndrome. My 25 year old daughter Jennifer died of Colon Cancer in 2002. Because of her age we were all tested and I was also diagnoised with Colon Cancer at that time. Then after her death we we again tested for Lynch Syndrome. 2 more of my children and myself have Lynch Syndrome.I have had Colon Cancer twice and also Endometrial cancer.

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