CancerGuide: Researching Your Options
Advantages and Disadvantages of Using a Service
One way to get technical information on your cancer is to pay a professional search service to search medical databases for you. This has both advantages and disadvantages. The main advantage is that you get the expertise of someone who knows how to search. This means that you can be sure you will not fail to get the information you are seeking because of your inexperience in using medical databases - using a medical database effectively is a skill which sometimes rises to the level of an art. Using a search service also means that you don't have to spend your precious time learning how to use a medical database.
One disadvantage is cost. You may pay up to several hundred dollars for a professional search when you could probably do it yourself cheaper. Prices of search services vary widely, so if cost is an issue, shop around a little. A more important disadvantage is that when you use a service, you give them the question you want answered, get the answer back. In some cases you can then ask for more information on specific topics, but the process is hardly interactive. In contrast, if you do it yourself, your initial search can unlock interesting information that can interactively lead to new searches and new information. Researching the literature can be a continuous process that leads you towards exactly what you want, and to questions and answers you had not even considered when you started. If you can learn to use the databases effectively, you will probably be able to do a better job by doing it yourself. If you are interested in doing it yourself CancerGuide will show you how to gain MedLine access and will give you some good general advice on how to research the medical literature.
One very reasonable option is to pay a service to get started, and then to investigate questions raised by the results of this search by learning to search yourself. This way, you are sure not to totally lose the power of researching the literature due to difficulty in learning how to search, but you retain the chance to take full advantage of medical databases if it turns out your mind works that way.
The prices of the services listed here may well have changed since I wrote my review - the intent is to give you an idea of the relative pricing. Some services return information on alternative therapies in addition to the information on conventional therapies. In some cases, the emphasis is on alternative rather than conventional therapies, and I list these separately. Most of these services do not return complete articles, but rather the title and abstract of the papers. Some services do include complete articles in their report but even they can include only a small fraction of the important articles. You will still have to visit a medical library or use a document service to obtain copies of most of the articles cited in these reports.
Selected Search Services
Services Specializing in Conventional Therapies
Schine On Line Services
39 Brenton Ave.
Providence, RI 02906
Gary Schine, cancer survivor, and author of Cancer Cure, offers a search service for cancer patients. This includes a MedLine search and a PDQ clinical trial search that is not limited to one geographic area. In addition, he searches other databases as appropriate including NORD (National Organization of Rare Disorders). A typical report runs 80-275 pages. Schine does not attempt to interpret the information for you - that part of the job is up to you and your doctor. The cost is $189.00. Monthly updating of the report is available as well. The cost for this is a reasonable $40.00 for three months. I reviewed of one of his reports. I thought it very comprehensive and thought it would be extremely useful to any patient needing information. The searches were fairly broadly framed, however, and contained some information that was not specifically relevant. It is left to you and your doctor to pick out the most relevant information. Check out the Schine On Line Services home page for more information.
[Re-Reviewed February 2002, included interview with Gary Schine]
415 Madison Avenue
New York, NY 10017
Cancer Advisors provides a report detailing your best options in clinical trials. Each report is prepared by a Cancer Advisor independent oncologist (the only service I've seen where reports are by a doctor). Reports are tightly focused on a small number of recommended clinical trials selected from a much larger database, and are only a few pages long. There is no attempt to give a comprehensive list of possible treatment options. With a Cancer Advisors report you will not be overwhelmed by reams of information of uncertain appropriateness! What is unique and wonderful is that they think strategically about what would offer you the most advantage and clearly explain the rationale behind the specific trials they recommend, and include abstracts or articles for the journal articles they cite. A report from Cancer Advisors is somewhere between a literature search and a second opinion! Check the sample report on their web site to get a better idea if their service would help you.
Their web site has a brief form to submit along with your credit card authorization to order a report. I don't think this form presently gives you room to express your preferences or give all of the relevant details of your situation, so I suggest bypassing this form and calling them directly. That way you can give them a better idea about what you're looking for. But first take a look at the form to see what information you need to gather. You may need to enlist the support of your doctor. If you have preferences for the type or location of treatment, you should make this known when you call! I understand that if you ask they will include an evaluation of specific trials you are considering.
Reports are currently $400.00. If it turns out you aren't a candidate for clinical trials, they will refund your money. Consultations with their oncologists are available for an additional fee, which unlike the report, may be reimbursed by insurance.
[Reviewed February 2002, included review of sample report and interview with CEO, updated March 2002 based on improvements in their service, updated contact info in August 2003]
Services Providing Information on Both Conventional and Alternative Therapies
The Health Resource, Inc
564 Locust St.
Conway, AR 72032
The Health Resource was founded by Janice Guthrie after her own battle with cancer showed her the power of information. This is one of the best known search services, and based on what I've seen, its excellent reputation is richly deserved. I reviewed a report for metastatic renal cell cancer, my own type of cancer. The report was roughly equally divided between conventional/experimental and alternative treatments.
The conventional/experimental section included basic information for the layman on kidney cancer from Everyone's Guide to Cancer Therapy, as well as anatomy diagrams. It also included about ten full length journal articles as well as MedLine searches with citations and abstracts for recent articles from the medical literature for the last two or three years. There was also a clinical trial search from NCI's PDQ database.
The articles were relevant and included information on many of the most important new treatments for kidney cancer, including some that are little known but quite promising. They didn't always give the best article on a given subject, but what they did provide was more than enough to send a determined reader down some very promising paths. The MedLine citations in the searches were also virtually all germane, and they actually took the time to highlight important statements from the abstracts, though they were not always consistent in doing this. The clinical trial search included clinical trials from all geographic regions, but for trials outside the patient's region, only the title and name of the chief investigator were given. The eligibility requirements were absent. It would be better if full information were given for all trials.
The alternative therapies section of the report is eclectic, covering a grab bag of therapies with Medline searches, articles from the technical medical literature, as well as some articles and book chapters from less technical sources. It appeared that some of the information was general and is probably included in every report, but there was also a fair amount of information that was quite specific to kidney cancer. The information on different therapies varied widely in quality - from pointers to the latest research literature to non-technical articles lacking information on the specifics of the therapy or the evidence supporting it. There were several interesting sounding therapies that I hadn't previously heard about, despite my interest in alternative therapies. There wasn't much information about how to use and evaluate alternative therapies. As usual, take with grain of salt, and beware of substituting unproven alternatives for proven effective conventional therapy, if such exists for your situation.
A full report costs $375.00 plus shipping as of this writing (1/98), and is worth every penny of that. When I was sick, and realized I desperately needed information, I didn't know where to look. I only wish I had known about The Health Resource. Receiving a report like the one I reviewed would have been beyond my wildest dreams. Visit The Health Resource's Web Page for additional information.
Services Specializing in Alternative Therapies
The Moss Reports
144 St. John's Place
Brooklyn, NY 11217
Ralph Moss is a prominent alternative therapy advocate and the author of several well known books on the subject including Cancer Therapy: The Independent Consumer's Guide to Non-Toxic Treatment and Prevention and The Cancer Industry. He is also the author of a book which is skeptical of conventional treatment, Questioning Chemotherapy, which I haven't read.
Moss maintains and sells reports on many different cancers. Rather than getting a custom search, you get a pre-written report (If you have something rare he will, if need be, do a custom report). But the objective is the same - to find the best current treatment. In this case the emphasis is on alternative therapies, though the report is by no means limited to alternative therapies.
I examined a report from the Winter of 1998 ordered by a patient with colon cancer metastatic to the liver. Moss's report is fiercely intelligent, covering and critically evaluating options in conventional, experimental, and especially alternative treatment. Rather than inundating the reader with reams of uninterpreted data, Moss's reports mainly consist of evaluation of carefully selected therapies. Unlike most other reports I have reviewed, Moss doesn't include either a MedLine search or a clinical trial search. But I found that almost every promising option I knew of for advanced colon cancer was reviewed, and in the area of alternative treatments there were a few I had not heard of. His review of each of the treatments I was familiar with was quite consistent with what I knew. Moss does seem to require the highest standards of evidence before being willing to accept the benefits of chemotherapy (but he is willing to do so when those standards are met - he acknowledges the probable benefit of adjuvant therapy for certain stages of colon cancer). In particular, he is very insistent that clinical trials which purport to show a benefit show a survival benefit, and not a surrogate such as "disease free survival" and certainly not "response rate." At the same time, he is willing to present cases and uncontrolled studies as evidence for alternative therapies. I think both points of view are reasonable, but they don't quite mesh. I bet if you took best cases of patients with some of the chemotherapy regimens Moss finds unconvincing they would easily match most of the alternative cases he presents - even if the treatment does nothing for average survival. Whether it is more likely that one finds a way around a tough prognosis though an exceptional response to a conventional treatment which is known to shrink tumors, but not to prolong average survival, or by being an exceptional patient with an alternative therapy, or by helping pioneer a promising experimental therapy is far from clear. (The decision to use alternatives is much clearer if they are complementary, and Moss also explores complementary options in his report). So while based on the report I read, The Moss Reports are impressive and full of interesting options, I do recommend continuing to consult with your doctors about what results can be expected and the best that might be achieved with the latest conventional therapies and experimental options before deciding to go with an alternative therapy as primary treatment. What you find in The Moss Reports on conventional and experimental therapies may well help you to explore these options with your doctors.
The report actually covered treatment of all stages of colon cancer. - which is a disadvantage if, like many patients, you are unsure of what stage and exact clinical situation you face. You need to understand the basics of your situation before trying to use one of the The Moss Reports. Because the reports are pre-written, it also makes sense to ask the date of the last update for the report you are considering. At the time of this writing (11/98) a report cost $275.00. As with most of the other services I review here, The Moss Reports are produced by a layman. Dr. Moss is neither a medical doctor, nor a research scientist - I believe his Ph.D. is in classics.
For more information, check The Moss Reports web site
3111 Paradise Bay Road
Port Ludlow, WA 98365
CANHELP is run by alternative cancer activist, Pat McGrady Jr. His service includes a search of the medical literature, along with a long personalized letter giving his opinion of the information in the search, as well as a description of alternative and conventional options he thinks are promising. He will recommend specific doctors for specific problems, and seems to have a vast store of knowledge of obscure conventional treatments given both in the US and overseas. The cost is $400.00. I saw one of his reports on my own cancer, and his letter mentioned several alternative and overseas treatments that sounded quite interesting, and which I had not come across despite my intense interest in research and alternative treatments. Rather than merely regurgitating the information, his medical literature search highlighted points of interest in the abstracts. In my judgment his emphases were appropriate, and his search was very well focused. On the other hand, since McGrady is an alternative therapy advocate, his opinions on the value of conventional therapy should be regarded with great skepticism. In the report I saw, he characterized the promising therapy that saved my life, immunotherapy with interleukin-2, as not really worth considering. This kind of advice could be lethal if accepted uncritically. In sum, his service is worth considering if you are interested primarily in alternative and obscure conventional therapies, and his store of knowledge is impressive, but his opinions of conventional therapy should not be accepted without a careful and thorough examination of the evidence. Visit CANHELP's web page for more information.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 1997, Last Updated: August 4, 2003