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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.
    1. 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.

    2. 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.

    3. There are Long Term Survivors of Even Stage IV Disease

      Read some of the stories of survivors

    4. 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.

    5. 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

    6. 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.

    7. 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)

    8. 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.

    9. 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).

    10. 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).



    11. 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.

    12. 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

    13. 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.

    14. 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.



    15. 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,
    1. 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.

    2. Do you know of another surgeon who might have a different opinion than yours as to whether or not surgery is an option.

    3. 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:
    1. 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 . . .)

    2. 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!)


    3. 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

    1. What is the mortality rate for this type of surgery?

    2. 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)?

    3. 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!)

    4. About how long does the operation take?

    5. 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).

    6. 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).

    7. 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?

    8. 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?

    9. 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

    10. 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.)

    11. (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?

    12. (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?

    13. 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!)

    14. After I go home, are there any signs I need to look out for which would indicate that I need to call you?

    15. What alternatives are there to the surgery? What happens if I don't do the surgery?


    Miscellaneous Questions

    1. 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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