A that they have “kidney cancer,” and

A Guide For Kidney Cancer PatientsThis is a intensive guide to the best and the latest for kidney cancer patients compiled by a fellow patient, and long term survivor of widely metastatic kidney cancer, Steve Dunn. My intent is to give you insight into therapies and strategies which will help you to maximize your odds of survival. This kidney cancer section is a special section of CancerGuide, my general guide to researching your options in cancer treatment.Are You in the Right Place? (Types of Kidney Cancer)There are several different kinds of kidney cancer, but by far the most common is Renal Cell Cancer (RCC), which is also known as Renal Cell Carcinoma. You might occasionally come across the term “Hypernephroma” which is an outdated name for RCC. Anyway, this page is about Renal Cell Cancer. If you have a different kind of kidney cancer, such as Wilm’s Tumor (a childhood cancer) or Transitional Cell Carcinoma of the Renal Pelvis (A rare type of kidney cancer which resembles bladder cancer in some ways) then the information in this page doesn’t apply to you. Many patients are told simply that they have “kidney cancer,” and while usually it is renal cell, you should check with your doctor to be sure before assuming this information applies to you.DisclaimerPlease note that while the information contained here is based on a significant amount of research by me, I am not a doctor or health care professional, and you should check on the truth of what I say before staking your life on it.Hints on Using this GuideThis is Challenging Stuff!: Although many of my articles are simple and should be easy to understand, in many others, I examine and present data directly from the technical medical literature in detail. I try to make it as understandable as I can, but things can only be simplified so far. You will have a much easier time if you spend some time learning about clinical trials and medical statistics on the rest of CancerGuide. I do present summaries of my conclusions which should make sense without too much effort. Still, it may pay to come back to some of the articles as you get more of the “lay of the land.”WARNING Statistics Included: When I was ill I really did not want to see the statistics and deliberately avoided asking specific questions. But when I had to make my own decisions I found that, like it or not, it was necessary to confront the statistics head on. Frankly, it was hell. But it’s just not possible to present the evidence in detail without getting into the statistics. Much more often than I’d like, they are grim, although there are also spots of real hope. I delight in finding good news and pointing it out whenever I can. It is helpful to have some understanding of statistics before you dig in. You should at least read The Median Isn’t the Message on CancerGuide before going any further. I do try to present conclusions first and the details later in each article. You may want to consider having a friend read it for you.Check It Out With Your Doctors: While I encourage independent thinking, you don’t want to risk errors due to misunderstandings – either yours or mine – and there may be specific reasons for modifying my general advice. So be sure to review your thinking with open minded doctors while recognizing that in the end it’s up to you.How to Start:First see my “Must Read” articles to get a general understanding of your situation, including the Guide to Staging and Grading, and my article about the Sub-Types of Kidney Cancer. Reading these articles may prompt you to ask your doctor some key questions and to get copies of some of your important medical records. The article on Resources will point you in the right directions for additional information and support. The main CancerGuide site (which this is part of) also has a wealth of general information on how cancer is treated and how to find and interpret information. Some understanding of cancer and the medical literature will be very helpful in understanding kidney cancer.Next determine whether you have localized disease (stage I-III) or recurrent or metastatic disease (stage IV) and spend some time with the appropriate section.References to the Literature: I have references to the original papers in many of my articles. In my “new style” each article contains reference lists (there may be several) which resemble those in journal articles but which are enhanced in several ways. First, each reference includes a link to the abstract (or rarely the full-text paper if it is available for free on the web). Second for many of the references I have included commentary along with the reference. My commentary often summarizes important data from the paper not available from the abstract. Also citations to the reference in the main text are clickable links which will take you to the appropriate place in the reference list.My older style reference pages are annotated literature searches which stand by themselves and include abstracts and usually my commentary on each paper. Usually I have a related article which references the annotated search.I have also occasionally included data from papers in some of my articles, especially response duration data and survival curves. These are always referenced to the original paper with a clickable link.Remember that abstracts I include or link to (excepting meeting abstracts) are only summaries of the full paper. If a paper is particularly important to your decision, I urge you to get the full paper yourself and also to share it with your doctors.Coverage of Rare Situations: I spent quite a bit of time researching unusual situations and techniques that will apply to very few patients. I did so because this information isn’t easily available elsewhere and will make a tremendous difference to those who need it. Understand though, that the space I allocate to something is no reflection of its overall importance to most patients.Where I Get My InformationMy Experience: I’ve survived widely metastatic RCC since 1989. My experience included nephrectomy, high dose IL-2 with Interferon, and all the hope and pain which comes with an experience like this. See “Who I Am” just below for more.The Technical Medical Literature: I’ve been reading medical journal articles since just after my diagnosis. You can be sure I’ve read virtually every paper I reference – not just the abstract and carefully!The KIDNEY-ONC mailing list: I learn a great deal from the over 1400 members of the KIDNEY-ONC mailing list which I’ve had the honor of co-leading since it was founded in 1996. Much of what I have learned started with a list member’s discovery of something important I didn’t know about.Conferences: I’ve attended conferences where I’ve been able to see the latest data and talk to researchers and doctors.Occasional Interviews With Doctors: Once in a while I get the chance to learn about the latest developments from some of the best respected doctors in kidney cancer – in person, by phone, or by e-mail.Who I AmI was diagnosed with kidney cancer in late 1989, at age 32. I had my kidney out, and then a month later was horrified to learn that the cancer has spread to both lungs and to multiple bones in my spine. After several weeks of frantically searching for options and stumbling awkwardly through the system, I found a clinical trial of High Dose Interleukin-2, a powerful immune stimulant, combined with Interferon Alpha, another immune stimulating drug. I traveled across the country to get the treatment that I thought was best, and was very fortunate in that I have gained a long term remission from my disease. I have been well enough to return to work, get married, father a child and climb the high peaks of the Colorado Rockies. Cancer is a strange and terrifying land but nonetheless my motto has become, “Anything can happen in this country.” If you’d like to read about my experience in more detail, see my story in CancerGuide’s patient stories section.Following my recovery, I realized that I had been fortunate to be able to figure out how to negotiate the system, and that actually I had hardly done a good job, but I also realized that many people with cancer never find out about promising new options for their cancers, and that many doctors offer only what is available locally, so I did some more homework, and started to teach a class on clinical trials for other patients. I absolutely believe that “Knowledge is Power”, and have become an information pack rat on my own behalf, as well as providing information to other patients in any way I can.AddendumSteve Dunn died on August 19, 2005, not from cancer but from complications of bacterial meningitis. CancerGuide volunteers maintain this site so that his story will continue to inspire others.AcknowledgmentsThe present version of my kidney cancer page is far beyond my previous versions. What you are now reading could not have been created without the funding from the Fischer Family Trust which has allowed me to spend several months researching kidney cancer and expanding this page.I also want to thank the hundreds of members of the KIDNEY-ONC mailing list from whom I have learned so much and especially those who have contributed directly to this effort.