A Guide For Kidney Cancer Patients
This 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outdated name for RCC.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.
Please 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 Guide
- This 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
- 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
- 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
Where I Get My Information
- My 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 Am
I 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
Steve 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.
The 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 CancerGuide Page By
Steve Dunn. © Steve Dunn
Page Created: January 30, 2003,
Last Updated: January 19, 2004