Every 25 seconds someone in the U.S. is diagnosed with cancer. If that
"someone" is you or a loved one, determining your best course of treatment -- your personal race for survival
-- is the most important first step. The partnership you form with your physician will help you discover ALL
your treatment options, including the potential to be treated with a new innovative therapy through a
clinical trial. Dr. Robert Comis and Selma Schimmel were online to discuss ways that patients and their
families can engage in a meaningful dialogue with their physician about cancer clinical trials, including
what questions to ask and where to go to gather information so that you will be empowered to make the choice
that is right for you. 
Selma R. Schimmel is CEO and founder of Vital Options® International TeleSupport® Cancer Network, the Southern California-based
national non-profit cancer communications, advocacy and support organization she started in 1983 when diagnosed with breast cancer at age 28. Vital Options became an international organization in 2000 committed to its mission to facilitate a global cancer dialogue. A cancer survivor almost half her life, Schimmel has become the voice of survivorship. As host of The Group Room®, the nationally syndicated radio
call-in cancer talk show, she talks with more than half-a-million listeners each Sunday. Schimmel's book, "Cancer Talk: Voices of Hope and Endurance from 'The Group Room,' the World's Largest Cancer Support Group,"
was published in 1999 by Broadway Books, a Division of Random House. 
Robert L. Comis, M.D., president and chairman of the Coalition of National Cancer Cooperative Groups, Inc., is professor of medicine and director of the MCP Hahnemann University Clinical Trials Research Center, Philadelphia, Pa.,
and group chair of the Eastern Cooperative Oncology Group (ECOG). A national leader in cancer research since 1977, Dr. Comis has been actively involved in raising awareness of the pivotal role of clinical trials in cancer treatment and prevention. He is a director of the American Society of Clinical Oncologists and chair of the Clinical Trials Team, National Dialogue on Cancer.
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Selma Schimmel and Dr. Robert Comis: SS: I'm really glad to be here to discuss this subject with Dr. Bob Comis and your readers. Dr. Comis, I'd like to start by telling you about a troubling call I received in The Group Room from a woman who asked her doctor about a clinical trial, but he dismissed it by telling her she didn't need that ...
RC: Selma, I understand that this is a continuing issue which patients encounter. It is important to understand that we are continuing to try to raise the awareness and participation of doctors, as well. In the end it is the patient's right to have an informed discussion about clinical trials as a quality treatment option, as part of the initial discussion concerning their therapy. In a clinical trial we are trying to
establish the effectiveness of new approaches to cancer. There is a considerable amount of both hope and uncertainty. So there is some uncertainty for both the patient and the doctor. Sometimes this uncertainty is difficult for the doctor to deal with and explain -- and the clinical trials process is somewhat more time consuming than just delivering "standard treatment." There are thousands of docors in the U.S. who do participate in clinical trials.
Philadelphia, Pa.: How do you suggest dealing with an unresponsive oncologist? We call, leave notes on the chart, page him, leave messages with nurses and staff to no avail. Otherwise, we feel he is a good doctor and providing good care; it's just so frustrating not to have good communication with him.
Selma Schimmel and Dr. Robert Comis: SS: First, it's important for the patient to understand that they come first in this process and that it's their right to seek information and get the feeling that their doctor is not responsive. They have a personal obligation to seek a second opinion. In fact, my experience is that the really good doctors encourage and feel supported when their patient seeks a second opinion.
Especially if that patient continues with that doctor. Their relationship is even more grounded in trust.
RC: I agree with Selma completely. There are always concerns on the minds of patients when they question their doctor, but the vast majority of doctors are interested in making the patient as informed as possible. We don't feel that our authority is questioned, but realize that the most important component is trust.
SS: It's very natural when one is ill to feel child-like and it's quite common to have a paternalistic relationship with one's doctor. Despite all of that, because we're talking about your life, it's vitally important to not make this a personal issue about not being nice to your doctor without taking care of
yourself.
Portland, Maine: As a newly diagnosed testicular cancer patient, I am wondering if there are specific questions I should ask my doctors or nurses. Are there terms or phrases I should be familiar with and using in those conversations? Thank you in advance.
Selma Schimmel and Dr. Robert Comis: RC: As you probably know, Lance Armstrong is a testicular cancer survivor. The Lance Armstrong Foundation has an excellent Web site that will probably be helpful to you. That Web site is www.laf.org.
Jaegerspris, Denmark: I have had two operations and six treatments with chemotherapy against ovarian cancer. Last treatment was in May 2002. At the moment I am cancer-free, but I am aware that in 80 percent of all cases the cancer will return. Recurrent cancer cannot be cured in Denmark. What are my chances of participating in a clinical trial if my cancer comes back?
Selma Schimmel and Dr. Robert Comis: RC: Without going into the details of your situation, I think it would be very important for you to seek out information from the major cancer center in Denmark. That is the Finsen Institute in Copenhagen. A phone number is 45 35 45 40 90.
Pittsburgh, Pa.: Is there a Web site available where I can accurately calculate my risk for getting breast cancer? I've heard that this is possible now.
Selma Schimmel and Dr. Robert Comis: RC: Breast cancer could be prevented in over 25 to 30 percent of instances using the drug Tamoxifen. There is a follow-up study now ongoing which is called the STAR trial in which Tamoxifen and another drug Raloxifene are being tested to assess the relative effectiveness and safety of each as a follow-up to improve the prevention profile for women at high risk for breast cancer.
They have a Web site which explains this trial www.breastcancerprevention.com.
Selma Schimmel and Dr. Robert Comis: SS: You know, Dr. Comis, I was diagnosed 20 years ago with breast cancer -- I was 28 at the time. It was the early days of lumpectomy and adjuvant chemotherapy. My entire treatment was based on the results of ongoing clinical trials taking place in Italy at the time. Those women were my silent partners in my treatment process because it was based on their participation that I had
some sense of direction in choosing a protocol two years before it was accepted as a standard therapy. This leads me to ask you to talk about the fact that clinical trials are not last line therapy.
RC: This is an important misconception. About 85 percent of patients who participate in clinical trials in the U.S. do so in phase III trials where we are comparing the new treatment to the best available treatment. In general, these studies are done in a first-line treatment setting. This is how we established that the use of adjuvant chemotherapy (treatment after surgery) improves the cure rate substantially in certain relatively early stages of breast and colon cancer -- for instance. For more information about
clinical trials, you can check our Coalition Web site www.cancertrialshelp.org. This will help put some misconceptions like this to rest.
SS: I just want to add that Vital Options has a free resource. The brochure series called "The Professor and Survivor." The first one is geared towards breast cancer. The information is also applicable to all clinical trials. For more information to obtain this free brochure, please visit www.vitaloptions.org.
Ahmedabad, India: Doctor, what do you think are the most important factor/factors for a doctor who is prescribing a chemotherapy regimen for a particular cancer patient?
Selma Schimmel and Dr. Robert Comis: RC: One of the most important factors that relates to the delivery of chemotherapy is the training and experience of the doctor involved in a patient's care. It's important for any patient to ascertain those qualifications as part of his/her decision-making process.
Dallas, Texas: I know a little about what is being done to educate consumers about clinical trials. What is being done to educate medical professionals so they can better facilitate access to trials for their patients?
Selma Schimmel and Dr. Robert Comis: RC: The clinical trials issue is extremely important for some of the major medical organizations in the country. In particular, the American Society of Clinical Oncology (ASCO), which is the largest organization of oncologists in the world. ASCO has made a commitment to educate and facilitate the participation in clinical trials by doctors. This will include new educational programs,
annual meetings to explain "how to" become involved in clinical trials and recognizing the doctors in the community who participate in clinical trials. ASCO will also use the accomplished physicians to help bring their experience to a much broader constituency. Also, the Coaltion of National Cancer Cooperative Groups has
developed new tools to help the staff, nurses and doctors find trials in a more rapid way through a program we call TrialCheck.
Ottawa, Canada: Do you feel that patient advocacy groups have a role to play in raising the awareness of the possibility of cancer patients taking part in clinical trials?
Selma Schimmel and Dr. Robert Comis: SS: Without a doubt, patient advocacy groups play a critical
role in raising awareness of patients in clinical trials. I believe that patients really need to see themselves as medical consumers in the proactive sense rather than as passive patients. In this way, we can help to drive the research process, raise awareness and help to increase access. Dr. Comis, you know so often the media reports on the worst of ... can you speak to the positives and gains?
RC: Newspapers and magazines sell only if they provide "news." Thus, they tend to report extremes, i.e. something really bad or extraordinarily promising. In either setting misconceptions can confuse the public. There have been a couple of terrible tragedies which have occurred in the last year or so to individual patients. Everyone involved in clinical research is totally committed to making the process as safe as
possible. On the other hand, there have been some very famous and responsible papers and news agencies that have "hyped" advances extremely prematurely. Raising false hopes and expectations.
Sanatoga, Pa.: I have cerivcal cancer near my rectum that has spread to my liver. I've had chemo, radiation (twice) and surgery. Are there any clincal trials that would benefit me? Thank you.
Selma Schimmel and Dr. Robert Comis: RC: There is a clinical trials group of experts in Gynecologic cancer -- including cervical cancer, called the Gynecologic Oncology Group (GOG). I'm not sure if there is a specific clinical trial for your case, but it is the largest group of investigators in the U.S. seeking new treatments for these types of cancers. You can get more information through the GOG Web site which is
www.gog.org.
Des Moines, Iowa: As a patient advocate what do you see as the advocate's role in assisting someone wanting a clinical trial? What steps can I take that would benefit them the most?
Selma Schimmel and Dr. Robert Comis: SS: The greatest gift a patient advocate can give to the person they're trying to support is to help them gather the information about research and clinical trials. It can be a daunting process and by helping a patient obtain this information, it is a great help. The advocate may want to go along with the patient to their appointment to help take notes and in that way, the
advocate and patient can discuss the results of that doctor's visit later on. I think that it's really important for patients to respect their physician's time by scheduling in advance a longer appointment to discuss their clinical trials and treatment options.
RC: Patient advocates are becoming a welcomed increased force in the entire clinical trials process. In the Coalition of National Cancer Cooperative Groups, we have a very active program designed to help educate the advocates on clinical trials, the cooperative groups and the process. We do have a developing patient advocate training program which will soon be available on our Web site (www.cancertrialshelp.org).
Monterrey, México: Having an atypical lymphoma/acute leukemia in a country with no clinical trials, what are the available options to take a clinical trial in the U.S.?
Selma Schimmel and Dr. Robert Comis: RC: A cancer center which has close ties with Mexico and the rest of Latin America is the MD Anderson Cancer Center in Houston, Texas. I'm not sure what arrangements can be made to participate in their programs, but it would be a reasonable place to start.
SS: This weekend, the Group Room Radio Show will be broadcasting in association with the American Society of Hematology (ASH) and I encourage this reader to access the Web simulcast since we will be discussing lymphoma and leukemia. This can be accessed 4-6 p.m. Eastern time and 1-3 p.m. Pacific time by visitng our Web site at www.vitaloptions.org.
Washington, D.C.: Are there any programs to offer and train physicians who practice in rural areas or outside of the major medical institutions on conducting clinical trails? I would suppose that there are many such physicians who do not currently have the expertise or access to clinical trials that would be very beneficial to their patients.
Selma Schimmel and Dr. Robert Comis: RC: This is an interesting question which brings up another huge misconception about the clinical trials process in the U.S. There are approximately 6,000 doctors across the country who are involved in clinical trials with the cooperative groups. This really is a network that spans the entire United States. In fact, over 60 percent of patients who enroll in clinical trial are
enrolled by community doctors -- excellent community doctors -- who are in communities nationwide. This isn't to say that every single community has a physician involved, but in most states there are many doctors who participate. In the cooperative groups, including the Eastern Cooperative Oncology Group (ECOG) we welcome participation of new doctors and use the existing programs to help bring these doctors on. And finally, there
is a new program being sponsored by the National Cancer Institute, which is the Cancer Trial Support Unit (CTSU) which is specifically designed to help more doctors participate. I hesitate to add another Web site amongst the others mentioned, but interested physicians can check this site at www.ctsu.org.
Manassas, Va.: I recently have been receiving treatment for Desmoplastic round cell tumor, but have not have much success. Do you know of any trials going on?
Selma Schimmel and Dr. Robert Comis: SS: Obviously in responding to Manassas and any other reader that has a disease-specific question abour clinical trials, I invite them to contact Vital Options at www.vitaloptions.org and we will assist them in doing a search for clinical trials for their specific disease.
Selma Schimmel and Dr. Robert Comis: RC: We really appreciate your interest in this Viewpoint discussion. Many questions have related to how to best discuss clinical trials with a doctor. On the Coalition Web site, we have a list of 10 questions you should ask your doctor when considering clinical trials. Once again, I honestly feel that most oncologists would feel happy to help you work through these
questions.
SS: Thank you, Dr. Comis, for making time to talk about these issues today. The fact that we are on this discussion today really does demonstrate how far physicians, survivors and patient advocates have come as partners in research and the healing process.
RC: Once again, Selma, thanks for your help in this important area.
Moderator: Our thanks to Selma Schimmel, Dr. Robert Comis, the Coalition of National Cancer Cooperative Groups, Inc., and all who participated.
