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Colon Cancer Diagnosis - What Your Doctor May Not Tell You
Disclaimer
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.
Partial Contents
Clinical Trials
Treatment Summary
Questions for your Doctor
I have recently (9/3/2001) put together the following electronic booklet to tell you some of the
things I have found out from my research after being diagnosed with stage IV colon cancer
in March 2001. This document will guide you through certain parts of my
webpage which you ought to see. It is by no means finished, it is an
ongoing project and I plan on updating the document
as time permits. I hope that it helps you with your own research and in your fight with
this disease.
- Don't Panic
There is nothing you "have" to do so quickly that there is no time to think about it.
Don't let anyone tell you that you "must" start chemo immediately, "must" do this surgery
tomorrow, etc. There is ALWAYS at least a little bit of time to look around and explore other
options, learn more on the Internet or at the library, get second or even third and fourth
opinions if necessary. DON'T BE INTIMIDATED INTO DOING THINGS TOO FAST BEFORE YOU UNDERSTAND
WHAT YOU ARE GETTING INTO.
- Attitude is Everything
Regardless of what you decide to do, chemotherapy, surgery, alternative medicine, etc.,
if you assume you aren't going to do well, you probably won't.
- There are Long Term Survivors of Even Stage IV Disease
Read some of the stories of survivors
- Learn everything you can about colon cancer
There are things I read about which I was
"sure" every oncologist "must" know, but to my surprise even ones I regarded
(and still regard) as very good didn't. It's impossible for them to keep up with
everything. Don't ever assume your oncologist knows everything you have read about.
Don't be afraid to question them, and don't hesitate to ask them for references
in the medical literature to back up their opinions about what they want you to do.
Doctors in general seem to have a nasty habit of presenting ONLY ONE POSSIBLE
course of action, when in fact there are usually MULTIPLE POSSIBLE courses of action.
For a quick summary of the things you need to know, explore
Getting Started. Remember, the more you know the
more you will be able to engage your doctor in a meaningful converstaion and
make intelligent decisions about your treatment.
- Get lab reports from your doctor
As you have been diagnosed with colon cancer, your doctor must have notes and
reports on your case. Every time you go in for anything, a record is kept of
what occurred, what tests were done and the results. Ask them for copies of all
this information. You will likely need it later if you get other opinions, etc.,
and also so you can refer back to it as you learn more and may understand it better.
For sites on what some of the blood and other tests are for, see
Lab Tests Online
and
HealthAnswers.com
- Call for more info
the
National Cancer Institute (NCI) 1-800-4-Cancer .
If you've done your homework, you'll get more out of this as the more you can tell them
about your diagnosis (e.g. stage, etc.), the more they can help.
- Surgery is always the best option if it is possible
Surgery is considered the "gold standard" for the treatment of metastatic colorectal cancer,
however depending on the locaton/number of metastatic sites, surgery may not always be
possible. According to
Hepatic colorectal metastasis: current status of surgical therapy.
: "Findings at any other site of intra-abdominal, extrahepatic metastases usually rule out
a liver resection . . . Disseminated pulmonary metastases also contraindicate liver resection, although aggressive
resection of limited pulmonary metastases (three lesions) along with the liver metastases has
met with reasonable success". (the link is to the abstract, but I am quoting from the
paper itself). Keep in mind different surgeons have different definitions of "resectable" so you should ALWAYS get a second
or even third or fourth opinion if a surgeon tells you that you are "not resectable".
They generally DO NOT perform both colon surgery and liver surgery at the
same time because that is considered too difficult (although in my case the surgeon did
do a simultaneous colon surgery and wedge resection of an easy to reach liver met). My colon
resection took about 3 hours, and they say my liver resection will take about 6 or 7 hours,
so from the time alone you can see simultaneous colon/liver surgery would be quite difficult,
not to mention the difficulty of recovering from such a procedure with possibly multiple
incisions.
A liver surgeon told me he will not perform liver surgery until at least 8 weeks has passed
from the time of the colon surgery (of course other liver surgeons may have different time
restrictions).
For liver metastisis, RF Ablation is considered an "experimental" therapy which
"may be as good as surgery", although currently there is not data to support this
because the technology is still new. They can sometimes use RF ablation to eliminate
"small" mets (maybe under 3 to 5 cm?) which are considered inoperable, but cannot use the technique
for larger ones. I do not believe they can use RF ablation for lung mets. It is also possible to
combine resective liver surgery with RF abalation, for example in the case where one lobe of the
liver has multiple mets, but the other has only 1 small met. The lobe with multiple mets might
be removed while RF ablating the single met on the other side.
Evolving Techniques for the Treatment of Hepatic Metastases
(Medscape Article-registration required). For an article on surgical resection of lung
mets, see
Surgical resection for hepatic and pulmonary colorectal metastases
(Cancerlit Abstract)
- Different doctors will have different opinions as to whether or not surgery is possible
You should ALWAYS go to a Major Cancer Center
for a second opinion. If you can't do that, you
can get a
Second Opinion Online
from the Dana Farber Cancer Institute, one of the top cancer centers in the US.
Liver surgery or any other type of complex GI surgery should always be done at a major
cancer center, see
Large-volume Medical Centers Produce Best Clinical and Economic Results for Complex Gastrointestinal Surgery
You should also keep in mind that SCANS
may be wrong (e.g a CT scan may show what
the doctor believes are METS in the liver, but upon further examination and more accurate
scans (e.g. MRI, PET or a "combination" scan) turn out to be BENIGN CYSTS (This actually
happened to me!). The correct INTERPRETATION of a scan can be the difference between
being considered INCURABLE vs being eligible for potentially CURATIVE SURGERY. That
is an example of why second opinions are so important!
Another Example: Leona's husband (see some of her old posts on
SupportPath.com )
had 8 tumors in his liver and was turned down by several surgeons before he finally found one to
operate. He is a very good example of the type of patient who is
most likely to be a long term survivor - informed, takes an active role in his own treatment rather than just "accepting"
what the doctors tell him, very resourceful, if one option doesn't work he goes on to the next! Although he lives in
New York, he had to go to Texas to find a doctor to operate on him like he wanted. I think he is a great "role model"
for how patients ought to approach this disease.
- Things Everyone Should Do (in my opinion)
Look into
Alternative/Complementary Therapy .
I'm not talking about expensive Mexican clinics with dubious "cures", but there are
some simple relatively inexpensive things they have actually tested in the lab on animal
tumors and even to some extent on humans which look very promising. Everyone can do these,
regardless of how advanced (of course the less advanced a patient is, the more the chance
that some of these things may help).
- Chemotherapy - What it Can and Can't Do
The current "gold standard" treatment for newly diagnosed patients is a combination of 3 drugs,
5-FU + Leucovorin + Camptosar. This combination has been shown in clinical trials to
have a response rate of about 50%, considerably better than the response rate of 5-FU + Leucovorin
which is about 10 to 20%.
Camptosar is known to have more serious side effects than the much older 5-FU, mainly severe diarrhea
which may result in dehydration, and severe immune system suppression. If you do not want to
take Camptosar, another option would be to take the oral pill version of 5-FU
Xeloda which has at least as good and probably a higher
response rate than IV 5-FU. If you are going to take Camptosar, you should also look into
taking Thalidomide along with it, as new research is indicating
Thalidomide may reduce the severe gastrointestinal effects of Camptosar. There may even be
clinical trials you could get into combining Thalidomide with Camptosar. You should think very
carefully before you take Camptosar outside of a clinical trial, because if you do you will
automatically become ineligible for many of the clinical trials out there for very promising
new drugs if/when the chemotherapy fails (more on this below).
They are developing Tests to See if 5-FU Will Work .
You may want to be tested for
Microsatellite Instability
as this seems to correlate with better survival/response to 5-FU based chemotherapies.
For the main conventional colorectal cancer chemo and other therapies, see
Therapeutic Options for Treating Advanced Colorectal Cancer
(article from the Clinical Journal of Oncology Nursing) and
Treatment for Colorectal Cancer (from the NCI)
and
Treatment of Unresectable Colon Cancer?
(Medscape Article - Registration Required What are the therapeutic options for a newly diagnosed
patient with stage D carcinoma of the colon with unresectable bulky peritoneal carcinomatosis? The patient is
37 years old)
As pointed out in the article from Medscape,
Evolving Techniques for the Treatment of Hepatic Metastases
(Medscape Article-registration required).
chemotherapy may be used in an attempt to
shrink tumors considered unresectable so that the status may change to resectable disease.
By themselves, the current chemotherapy agents are usually NOT considered "curative" (at least
for stage IV. For stage III, chemotherapy has been shown to reduce the likelihood of
recurrent disease by about 12%). Sloan Kettering has been having some success in restaging inoperable
liver tumors by using a technique called "Hepatic Arterial Infusion" (HAI) where they
install a liver pump to inject chemo directly into the liver. For more information see
Liver Overview and Liver Pump
If you have stage IV disease and you have decided to do the "standard" chemotherapy as
recommended by your oncologist, you should very carefully discuss the goals of that chemotherapy
with your oncologist to determine how he/she views the situation. The article
Patients And Physicians Often Disagree On The Goal Of Chemotherapy indicates patients and
physicians often have different ideas of what the goals actually are.
Patients might be quicker to search for experimental alternatives to chemotherapy if they thought
chemo was not likely to be curative. Also, many clinical trials for newly diagnosed stage
IV will combine the "standard" chemotherapy with a new experimental agent, so there is
little to lose by being in the trial.
If in stage IV the metastatic tumors are resectable, there is some controversy over whether it is necessary to do
chemotherapy either before or after completely resective surgery to remove all measurable
disease in the liver (I assume this also hold for resectable lung mets?), see
Adjuvant or Neoadjuvant Therapy for a Liver Metastasis? and some of the papers in the
Technical Corner . You should ask your doctor if he/she
is familiar with this literature. There is evidence that chemotherapy
is of benefit in stage III and doctors apparently sometimes recommend chemo for stage IV without
proof of its benefit based on the stage III data. You might consider probing some of
these areas with your doctors. I have run into different doctors with different opinions
on this, so if you don't like what your doctor says, chances are you can find another with an
opposing viewpoint. I believe that the uncertainty of chemotherapy benefit in completely
resected stage IV justifies the use of experimental or alternative therapies in this setting.
Main points:
Many patients don't understand the goals of chemotherapy
Chemo may be successfully used in "restaging" for potentially curative surgery.
Thalidomide may improve the side effects of camptosar.
There is controversy over the efficacy of chemo to prevent recurrence in completely
resected disease.
If you are newly diagnosed with unresectable disease and do chemo (Camptosar), you
should try to get into a clinical trial. There is nothing to lose and maybe a lot to gain
(see below for more discussion on this).
You can take 5-FU based chemo without ruining your chances of getting into a trial should
the 5-FU fail later (see below for more discussion on this).
- Clinical Trials
One quick point: DO NOT ASSUME YOUR DOCTOR "KNOWS" ABOUT THE CLINICAL TRIALS OUT THERE.
Many oncologists are so busy treating
patients they don't always have time to keep up with the latest, and they should appreciate
your help in pointing out alternatives they may have overlooked (if not, you might consider
getting a new oncologist!)
For this discussion I will assume you know about the different types of clinical trials:
specifically the info
here
from Steve Dunn. You should look at Steve's whole site, i.e. see
Steve Dunn's Cancerguide
for a more complete discussion of how to do cancer research in general. I won't repeat
the material he has there as I have a different approach you may find easier.
If you decide to go the experimental route,
my website
will give you a good starting point
for your research. There have been some pretty amazing success stories associated with some
of these experimental drugs, see
New Cancer Drugs Show Promise for one such example. This is the story of Shannon Kellum, who
was near death from extensive metastatic disease but was saved at the last minute by a monoclonal
antibody called C225. Today she is completly disease free, and has been for over 3 years.
Unfortunately there is no "magic bullet" which will work for everyone (including C225,
which will probably be on the market next year), but the point is that IT IS POSSIBLE that this or
other therapies which are too new to have the publicity C225 did might have an equally dramatic
response for you. The bad news is that most of us do not have an
oncologist as good as Shannon Kellum did to find these things for us, and we will have to search
around ourselves for these experimental alternatives. But that's what my website is all about.
You now have the tools to do this search yourself, because with the links in this site you
will either have a direct or indirect link to most everything out there. I've spent about 2 months
of full time effort into doing the research, finding the links, and putting this website together.
You will be able to go MUCH QUICKER with your own research by building on what I've already found.
For the remainder of the discussion in this section, I will assume your situation is as follows:
Newly Diagnosed with no prior chemo, unresectable disease, OR: failed 5-FU based chemotherapy
(with unresectable disease) but have not taken Camptosar. Later I will discuss treatment
options for other patients (chemo resistant patients should look very closely at the Phase I
trials in
Cybermedtrials for Colon Cancer )
If you decide to do chemotherapy, the current "gold standard" is a combination of 3 drugs:
5-FU, Leucovorin and Camptosar. This combination has been proven in clinical trials to have
about a 50% response rate. However, there are several new drugs in clinical trials right
now that when added to the "standard three" MAY even improve this response rate (I cannot
imagine them making it worse, so there is nothing to lose by trying them). I WOULD STRONGLY
RECOMMEND YOU LOOK INTO THIS FURTHER. The ones I would consider most promising (and the
ordering here is the order in which I would pursue these) are:
C225 ,
Anti-VEGF , and
SU5416 .
There are currently Phase II/III trials going on with all these compounds. Now the tricky
part you won't find out about until you really get into research on this is that YOU HAVE
TO SATISFY "INCLUSION CRITERIA" BEFORE THEY WILL LET YOU INTO ANY OF THE TRIALS FOR THESE
DRUGS. What does that mean? Well, for example, for the compounds I have mentioned IF
YOU HAVE TAKEN PREVIOUS CHEMO THEY WILL NOT LET YOU INTO THE TRIAL (at least this was
true for the protocols I saw a few months ago). You also have to have "measurable disease"
(i.e. they can see your tumor(s) on CT scan - this makes me ineligible for many of these
trials right now as I had liver surgery which successfully removed my mets so that I am
currently "clear"). This is kind of a dirty deal, because it means a lot of patients who
might benefit from the drugs will never get the chance to try them. I won't go into the
reasons for this right now, suffice it to say that it has to do with politics at the FDA
and the way drug companies must respond to that. Also, if your doctor doesn't mention a
trial and you haven't found out about it from other sources, you would never even know
of its existence! When I was first diagnosed, I asked my (now ex) oncologist if there
were any trials out there I should know about and she
said "no, nothing's there". I knew that wasn't true and was able to quickly locate
several on my own. There are databases of
Clinical Trials
and you can spend countless hours looking thru them and still come away without a good
idea of what is out there because they are filled with ineffective trials comparing
different dosing schedules of 5-FU, etc. and offer not much new (I heard some oncologists
jokingly refer to these dud trials as "Coke vs Pepsi tests"!). If you're interested in specific
cancer centers and what trials they have going on there, you have to check their
website to find out what they are doing. I did compile a list of these
here but it is by no means comprehensive. Unfortunately
there is no "global" database of all clinical trials, so you MUST look at different ones.
To get around some of this, I recommend doing research in a different way. All you really
need is the following document
Listing of All Cancer Drugs in Development (from the Pharmaceutical Research and
Manufacturers of America).
This is a complete list of ALL drugs in development for colon cancer as of this year.
Right now in the situation under consideration here, I would ignore the ones in Phase I
as those trials are
really designed for SAFETY not EFFICACY and they probably wouldn't let you in to one of
these anyway (NOTE: it is possible some of the Phase I drugs
may have made it into Phase II since the document was written, so you might want to check
these out too just to be sure). Look only at Phase II and Phase III trials. Now, find out the name of
the company which makes the drug and CALL THEM to ask about current and upcoming trials
in CENTERS NEAR WHERE YOU LIVE. YOU HAVE TO CALL, because the trial databases I mentioned
before have a LAG TIME before new stuff gets entered, you need to know what is happening
NOW and TOMORROW. New centers closer to your home may be opening up soon not mentioned
in the database. The Phase III trials are usually going on in a lot of different centers
all over the US. Use the trials database mainly AFTER you have identified a drug so
can pull up a synopsis of the trial protocol and find out what the previously noted
INCLUSION CRITERIA are. I have put up research I have done on some of the compounds
I thought looked promising on this website - use that info as a "template" for your
own research. For example, see the links I have to the Yahoo company news, Yahoo Bulletin
Boards, Raging Bull (Stock) Message boards and Biospace news on different companies like
ImClone
for example, (manufacturer of C225).
You can use the Yahoo company news to keep up on what is going on for drugs you are
interested in, and the Yahoo Company Stock discussion bulletin boards often have rumors and
info before it is even released by the company. For example, I actually found out the
response rates for C225 in chemo resistant patients from reading posts on the Yahoo ImClone
board a couple weeks before ImClone released the info at the big ASCO meeting! For more info
on a drug/company there is another very important site you should know about called
BIOSPACE
They have
Biospace Breaking news on Colon Cancer
and a
Complete list of all Pharmaceutical Companies
, you click on the company name and it gives you a summary of all the drugs that
company is working on with more links. The only thing you MIGHT NOT find on Biospace
and the PRMA site is info on trials involving RF Ablation, the liver pump for chemo, etc.
(in other words, trials on MEDICAL DEVICES). For these you may be better off searching
the trial databases previously mentioned, narrowing your search there by using "search
criteria" if possible.
For even more info, I use the search engine
Google,
as I have
found thru experience with different search engines that it seems to return what I
consider the most relevant info on a subject. To find out results from past clinical
trials on a drug, do a
NCI Cancerlit Search
by typing in the name. You might also check out the
2001 ASCO Abstracts
for info which hasn't made it into the Cancerlit database yet.
Here is an example of another "decision" you might have to make, illustrating
how important it is to do your own research so that you will understand the situation
enough to do so intelligently. Let's suppose you meet the inclusion criteria for
both C225 and Anti-VEGF,
what should you do? C225 is under review right now by the FDA for approval, and will
probably be on the market in 6 months to a year. If you enter the C225 trial and it
doesn't work, you will probably be ineligible for the Anti-VEGF trial. On the other
hand if you did the Anti-VEGF trial first and it didn't work, it might take you 6-12
weeks to find that out, maybe C225 would be available a few more months after that
depending on when you start your therapy and you could eventually get that too.
What do you do? I dunno, I guess each patient has to decide that.
- Treatment Options Summary (All Patients)
Quick Summary: Therapy Options for Stage IV
Surgery is always the best option if it is possible. If not, for liver metastisis there is
a new technique called Radio Frequency Ablation where they use a heated probe to kill tumor
cells. This will only work on small tumors (<5 cm). There have been some experimental uses
of the Cyberknife (radiation therapy) for lung metastisis. There is a technique called
HEATED INTRAOPERATIVE INTRAPERITONEAL CHEMOTHERAPY which has been used with some success
in patients with metastisis to the abdominal cavity. One of the primary proponents of this
is a doctor in Washington, DC,
Paul H. Sugarbaker, M.D., F.A.C.S.
who has published extensively on it (see the info on his website).
Celebrex is a prescription drug which was recently approved for arthritis and
Familial adenomatous polyposis (FAP), a disorder
"characterized by the development of hundreds to thousands of potentially pre-cancerous (adenomatous)
polyps in the colon and rectum, which typically first appear in adolescence and early adulthood". One might suspect it is not
a tremendous leap to think that if Celebrex is efficacious for FAP, it would also be efficacious for
colon cancer (treatment and/or prevention of recurrence) and in
fact many researchers think the same thing and there are clinical trials going on right
now to test this hypothesis.
As you can get Celebrex from your doctor or the internet, you don't need to enter these trials in order
to be on this therapy. It is believed that when
combined with Lovastatin, these two drugs may prevent recurrence in currently "free of measurable
disease" patients or slow disease in more advanced patients.
The breast cancer drug Herceptin is thought
to work for a small percentage of colon cancer patients
whose tumor cells overexpress HER2. A recent
study
in animals
showed that combining Celebrex
with Herceptin was more effective than either drug alone, and (amazingly enough) worked to kill cancer cells NOT
overexpressing HER2. There are no clinical (human) studies on this to my knowledge.
Thalidomide is also believed to be another antiangiogenesis agent. There is evidence that
it may lessen the severe GI side effects of Camptosar, if you are taking Camptosar you might
want to consider adding in Thalidomide too. I also saw a clinical trial involving
taking Thalidomide by itself after surgery "clearing all visible disease", but I wouldn't enter it
if it is randomized and there is a chance of getting on a Placebo arm, as Thalidomide is on the
market and you can get it anyway!
Therapy options will depend on your particular situation. The following are the main
situation/option combinations:
A) measurable disease, unresectable
B) "clear" after surgery patients, stage III or IV
C) Very late stage chemo refractory
See
Cybermedtrials for Colon Cancer for a good summary of Phase I studies for advanced patients
(NOTE: if you are looking at Phase I trials, you will do better if the trial has already been
going on awhile rather than just opening up. This is because a lot of times Phase I are "dose escalating"
trials, where the first few patients come in on a very low, ineffective dose and then if the side
effects aren't too bad, the next few patients come in on a higher dose, etc. You want to come in
later so you will be on a HIGHER DOSE which is more likely to be efficacious).
Some other options are (may be some repeats with Cybermedtrials):
A good resource for end of life patients/caregivers is an online document written by
a RN who has had a lot of experience with dying patients,
Crossing the Creek - A Practical Guide to Dying Process
(NOTE: As the booklet says, "The views expressed in this guide are the opinions and
perspectives of the author. They were acquired over years
of working with dying people, but do not constitute the only
valid perspective on dying process. If the opinions expressed
herein clash with your own, stop reading and search for support
elsewhere.") Other refernces for end of life patients are
here
- Keep up with Cancer News
See Current News for a list of sites you should
visit often. Reuters is a great source of "non-technical" info.
- Be Aware of Common Pitfalls
A. Imaging does not always work (see discussion above). The PET scan is apparently the
"best" scan for determining the extent of disease spread, but it gives "fuzzy"
images and is not good for determining size and exact location of mets, etc. There
is a new
combination scan
at the
University of Pittsburg Medical Center
which may offer a solution
to this problem.
B. Cancer may be spread by surgery and biopsies. It is well known that mets often
appear along the NEEDLE TRACK for a biopsy, so unless there is a REALLY GOOD reason
to have a biopsy done, I wouldn't do it. For example, see this
article
which notes: "Additionally, doctors and researchers have noted that biopsy of a cancerous tumor can cause spreading or
"seeding" of cancer cells along the path or track made by the biopsy needle. This could cause cancer that had been
confined solely to the prostate capsule to spread into surrounding tissues, making a serious health concern even more
problematical" This applies to ALL cancer biopsies, not just those
for prostate cancer. For further info on different types of biopsies, see
THE BIOPSY REPORT - A Patient's Guide
C. Surgery may be better than RF ablation because during surgery, they could see other
mets which DID NOT show up on scans and these could be removed surgically also
with a better chance of "cure" or remission.
- You are ultimately in charge, not your doctor
It's YOUR BODY, not your doctor's, and you should take responsibility for whatever
treatments you receive. Your doctors can make recommendations about how to proceed, but
ultimately the decisions are up to you. The more you know about your disease, the more
informed decisions you can make and the better your possible outcome.
Questions for your doctor
Based on the above discussion, this section contains some questions you may want to ask
your doctor(s).
First see
FAQ with Questions for your doctor
From the Colon Cancer Alliance,
Questions for Your Doctor
from NCI,
What to Ask Your Doctor
from CancerOnline and
OncologyChannel Questions for Physician
for some "generic" type questions.
Colorectal Cancer (from Vcure.com)
also gives an overview of colorectal cancer along with a few questions you might ask.
If your doctor DOES NOT want to perform surgery for metastatic disease,
- Why not - is it because of the location, the condition of the patient, etc.
For example, even when mets are confined to the liver, they can't operate if
mets are on both lobes (although as already noted they might be able to combine
RF ablation with surgery).
It is also possible that for stage IV resectable disease the doctor wants to
"wait and see" what happens for awhile to "get a feel for how things are going to
go" with you for a few months. Will the number of mets dramatically increase or will
you take a "turn for the worse" in some other way, and early surgery would not have
helped? This appears to be one of those "doctor opinions" where there is no consensus
and if you don't like your doctor's opinion, you can find another whose opinion is in line
with yours.
- Do you know of another surgeon who might have a different opinion than yours as
to whether or not surgery is an option.
- If the reason is that there are too many mets on both lobes of the liver,
what about RF Ablation as an option instead of surgery?
If your doctor wants you to do chemotherapy:
- Because of the controversy surrounding chemotherapy use with completely resected stage IV
disease, I would like to find out more about whether it is likely to help. For 5-FU, they
apparently are starting to develop some tests which can tell you this beforehand, see
Tests to See if 5-FU Will Work . Have you read
about this, and could we do it before starting therapy? (note: I have not asked my doctor
about this yet, so I don't know if it is readily availiable right now or not. If not,
I bet it will be in the future. Of course, the insurance company probably won't want
to pay for it . . .)
- Because of the controversy surrounding chemotherapy use with completely resected stage IV
disease, what do you think about the following experimental alternatives:
(a) Vaccine Trials
to prevent recurrence
(b) Using Celebrex or
a Celebrex/ Lovastatin combination
to prevent recurrence
(c) Are there any other clinical trials? (and the answer is "yes", but I like to
ask them that anyway just to see what they say. Actually, you should ask this
FIRST before you bring up any clinical trials you may have found to see
what they are aware of - maybe it's not a good sign if they answer "no"
to this question!)
- I have heard that there is a new oral pill called Xeloda which has a better response
rate than IV 5-FU. It has fewer side effects and you don't have to go in each week for the
IV. What do you think of that?
Surgery Questions
Major lung/liver surgery should only be done in a research hospital - you don't
want an inexperienced staff in a rural institution performing your operation, as the
chances something
will go wrong decrease as the number of times your doctor/hospital performs the
operation increases (see
Large-volume Medical Centers Produce Best Clinical and Economic Results for Complex Gastrointestinal Surgery
for some info on this). For an idea of what to expect from liver surgery, see
Resection for Liver and Biliary Cancers
- What is the mortality rate for this type of surgery?
- What complications are likely to develop from this surgery, how serious are they,
and what percentage of patients experience each one (from the medical literature)?
- How many operations of this type have you personally done? How many years have you
been doing them? What percentage
of your operations like this have had major complications or death? (note: if the death/complication
rate for your doctor is much above the answer to question #1, better run!)
- About how long does the operation take?
- Are there any medications I SHOULD NOT BE TAKING before the operation? (e.g. aspirin may not
be a good idea as it is a blood thinner).
- Is there any labwork or anything else I could do before the day of the surgery/procedure to speed
things along that day? (e.g for some CT scans where you have to drink imaging solution and
wait an hour, you could drink the solution before you come in to save time. For other
procedures like hepatic arteriograms they need bloodwork to check for clotting, etc. which
you could do the day before).
- EXACTLY what should I expect when I wake up in recovery? What tubes, etc. will I have and
why are they needed? When should they be removed?
- Could you draw a diagram of my (lung/liver/etc) and show me where the lesions are and
exactly what you are going to do?
- How long does it take to reach each of the "milestones":
Getting out of bed and walking
Drinking fluids
Eating solid food
Getting off the IV
Removing drain tubes
Going home from the hospital
Not needing painkillers
resuming work
Being completely recovered
- Are there any permanent side effects which might result from the
surgery (e.g. reduced lung capacity, altered liver function, liver or lung scarring making
future CT more difficult, etc.)
- (liver surgery)If for some reason you determine that I am not resectable after
you start the operation and further evaluate my liver, can you RF ablate everything
instead of doing the surgery?
- (liver surgery) Are there any medications I should not take after the surgery
because of altered liver function? How long after surgery do I need to worry about
this?
- If I will likely need a blood transfusion, I know I can do a "self donation"
before the surgery so that I can receive my own blood. I've heard this may be safer,
because that way there's no chance my body will have any immune reaction to someone
else's blood. If there isn't enough time to get all the blood you think you'll
need, I would feel more comfortable if my wife could also donate a unit before my
surgery for me, rather than my getting blood from the general supply. I know this won't
help with the potential immune reaction, but there might be less chance of my getting
some other infectious agent from the blood.
Can we do that? (note: you will probably get fierce resistance on this one!)
- After I go home, are there any signs I need to look out for which would
indicate that I need to call you?
- What alternatives are there to the surgery? What happens if I don't
do the surgery?
Miscellaneous Questions
- There is a test of tumor tissue for something called
Microsatellite Instability . This is a
prognostic factor which you may or may not be interested in knowing, but if you are interested
in this they can use a piece of your colon tumor which has been saved to determine if
your tumor expresses it. You may want to ask to have this done.
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