How to proceed after a cancer diagnosis

We were at that point in February 2008.  After the announcement from the doctor that I had a rare malignant cancer, we were thrust into the world of cancer.  We wanted to do whatever it took to get rid of my cancer.  After going through the standard conventional treatments (surgery, radiation and chemo), and having consulted with many conventional and alternative doctors, this is what we would have liked to have known at the beginning of this fight:
  1.  Get your mind/emotions in the right place
    • Don't panic. The best thing you can do is to focus your energy and strength on doing what you can do to make a difference in outcome. The worst thing you can do is to allow yourself to worry, be anxious or panic.
    • There is strong evidence that our immune systems are affected by our emotional state.  Worrying or panicking is going to get you nowhere. It's not going to help your body fight the cancer one bit. You need to pull yourself together and do what it takes to get your mind/spirit in the right place. That should be your initial priority.  Find time to do things that are enjoyable and relaxing.
    • If you believe in God, make peace with Him right now so that you will be free and ready to focus your energy and mind on productive action.
  2. Gather information
    • The problem with cancer is there are no iron-clad solutions. An MD friend once told me that nobody is an expert at cancer. As in all things, "experts" are generally physicians experienced in a specific modality of treatment (i.e. chemo, surgery, radiation etc). The scope of expertise is restricted to training and experience administering a specific modality. Your typical medical team will probably have a quarter-back - probably the medical oncologist. This person would coordinate care across modalities (i.e. with your surgeon, radiation oncologist etc). Even so, the scope of his/her expertise would again be restricted to the experience and knowledge across these modalities, as well as the interactions, potential synergies, or potential pitfalls between these modalities.
    • My advice is not to restrict your advisors to the medical oncologist, surgeon or radiation oncologist. Broaden your scope and gather advice from other doctors, respectable CAM (complementary/alternative) doctors, friends who've gone through cancer. Start a habit of researching pubmed articles, internet blogs etc.
    • By all means, study all the conventional literature on your cancer. Don't be afraid to face your cancer and the statistics squarely. You can't afford to be an ostrich and bury your head in the ground. You need to understand your cancer in order to make intelligent, informed decisions.
  3. Understand the pros and cons of scientific medicine
    • The great majority of oncologists, surgeons, and physicians stick to recommending treatments according to standard treatment guidelines.There are tremendous advantages to this - the foremost being the leveraging of experience and outcomes gleaned from clinical trials and best practices explored by physicians around the world. I call this scientific medicine because of it's heavy reliance on statistics gleaned from clinical trials. The larger the trial, the better. The smaller the trial, the less credible. This philosophy has tremendous usefulness. However, it also has significant limitations - especially for a complex, not very well understood disease like cancer. Furthermore, there are many minority cancers where lack of financial incentive and lack of large scale trials make progress impossibly slow.  
    • To put things another way—a cancer patient does not care about proving that drug X works in some double blind clinical trial etc. A cancer patient cares about finding the most reasonable strategy to increase the odds of survival while preserving quality of life.  
    •  I have no doubt that the vast majority of oncologists mean well, and are acting in the best interest of the patient. However, the current state of medicine in the US has constrained physicians and oncologists to wait for scientific proof before trying something out of the box (Why this is the case is a whole other discussion). 
    • One key problem is this: The direction of science and medicine is essentially dictated by money. In the US, the FDA has now made it virtually impossible for any non-patentable drug/procedure to be scientifically approved. Why? Because to be approved, it needs to go through multiple phases of clinical trials. It takes close to 1 billion dollars to accomplish this. This fact essentially limits approval to drugs & procedures that have the financial backing of large corporations (drug companies). Therefore, in it's attempt to regulate medicine, the FDA has corrupted medicine.
    • You need to be aware of this dynamic. It will give you perspective (and hope) that you are not restricted to becoming just another statistic. As you continue to do research, you will find that there are indeed those who beat the odds. Scientific medicine mostly brushes these anecdotal cases aside. That is a great loss. The doctors/scientists of the day brushed aside the opinion/findings of a simple countryside doctor years ago. That countryside doctor made the anecdotal observation that milkmaids who got the mild cowpox disease seemed to be protected from fatal smallpox. Undaunted, Jenner developed his own smallpox vaccine. It took decades (at least 20 years) before the science finally caught up to Jenner's anecdotal observations. And today, the WHO has declared smallpox to be an eradicated disease. 
    • The point is, you need to understand that scientific medicine is not the final authority on your cancer and prognosis. Physicians who follow the scientific medicine philosophy may be very good at what they have learned and practiced. But where cancer is concerned, there are just too many unknowns and loopholes that cannot be accounted for with this approach.
    • One example of an unknown is spontaneous regression. Any respectable scientist will tell you that there have to be reasons for spontaneous regression. Yet, the current model of scientific medicine, with it's reliance on clinical trials, will never be able to study spontaneous regressions". How would you even begin to plan a trial for something that could spontaneously happen for no apparent reason? Yet, there have to be reasons. In order to begin investigating these reasons, we're going to need to adopt a different philosophy and approach to the question.  
    • So, when the veteran physician / expert tells you "you must do this or else you will die", I hope you'll take a step back and interpret that statement in a more balanced, informed way. Ask for hard evidence and hard numbers. Weigh the potential proven benefit against the side effects. Take a few days or couple of weeks to get a second opinion. Scour the internet for alternatives. You may be surprised to find that you're able to make a relatively confident decision, that may not be in agreement with the "experts". Think for yourself.
  4. Find a balance between open-mindedness and evidenced-based. 
    • My wife and I continuously sought the advice and mentorship of physicians who are open minded and humble in their view of cancer. Open minded-ness is an essential factor. You need someone who understands the pros and cons of scientific medicine, along with it's limitations. At the same time, that person should ideally have an expanded awareness of alternative modalities and the evidence supporting those. 
    • On the other hand, there are plenty of quacks out there who practice medicine that simply does not work. Be warned. Alternative cancer treatment is very expensive (because it's typically not covered by insurance). So you have to choose carefully. You must examine the evidence.
    • That begs the question: How do you find the time and energy to examine all the out-of-the-box evidence out there? You're fighting against time, lack of energy and perhaps lack of money. 
    • If you can afford it, I'd advice you to find an "alternative oncologist". Ralph Moss, PhD (a journalist) has compiled such information. You can buy his reports that list such oncologists (even those reports cost money!). Nevertheless, an alternative oncologist may be able to save you a lot of time and money - and hopefully help you avoid looking at things that simply don't have sufficient compelling evidence.
    • My wife and I have worked with about 4 different MDs, 1 ND (naturopath), and a dietitian. All of these practitioners work with many cancer patients. We found that each practitioner has their philosophy and perspective. Given that there are No absolute answers in cancer treatment, what approach should one take in determining who to work with?
    • I would suggest looking for practitioners that embody the right balance of open-mindedness on the one hand, and evidenced-based thinking on the other hand. You need to find a comfortable balance between the two yourself—and then find a practitioner who most closely matches your philosophy. 
    • For example, there are a ton of "cancer cures" circulating on the internet (Intravenous Vitamin C, asparagus, Budwig diet, Gerson juice therapy, LDN) etc. Some people are comfortable putting faith in something and hoping/believing it will work. Perhaps it will. After all, the placebo effect is real and powerful. But what happens when the placebo effect isn't powerful enough (or when it runs out)? At the opposite extreme, some people want to see scientific papers and studies proving efficacy in humans before they'll even consider trying it—even if it has an extremely safe profile.
    • Ultimately, you need to find a balance that you're comfortable with.
  5. Plan, plan, plan
    1. You need to plan and not just jump straight in to surgery, radiation etc. I know you're fighting time—but I'll give you an example of why planning is so important:- I know the husband of a cancer patient who has exactly the same cancer as my wife. She did surgery, radiation, chemo. Months later, the cancer metastasized to her lungs. She had to go for multiple rounds of lung surgery because the cancer kept coming back there. She went for more high dose chemo. Finally, she was referred to an experimental immunotherapy trial at NIH in Maryland. She is then experiencing amazing regression of her tumors. Out of 17 lung tumors, only 2 or 3 remain. The largest was 8cm. Now, 2cm. All the rest disappeared. This doesn't mean that they will stay disappeared, However, the point is she could have potentially avoided many surgeries that didn't do much for her. 
      My wife is currently NED as of last scans. However, she is at very high risk of recurrence. So we're looking into similar immunotherapy strategies to this. However, in order to do this, we have to test her tumor for a specific genetic trait. Thankfully, the pathology lab at the hospital where she had her original surgery still has some of her tumor left - but very little of it. Basically they either threw the rest away or cut it up for research. If we had known about these immunotherapy possibilities, we would have explicit asked them to save more tumor. Right now, we might not have enough for dendritic therapy with Dr. Thomas Nesselhut (which we're considering). 
    2. Another example of why you need to plan is as follows:-
      Since chemo ended, my wife has suffered low white blood cell counts for 9 months. The doctors expected this to only last 2-4 weeks. This significantly impacts potential efficacy of immunotherapy, which relies on your immune system being strong to attack the cancer. So if you're considering adding immunotherapy to your arsenal of treatments, you may want to do it after surgery, but before radiation or chemo (radiation really can depress your immune system for an extended period of time - my wife had radiation 14 months ago and her lymphocyte count is still very low compared to original levels ... Cytotoxic T-lymphocytes are believed to be the main active anti-cancer white cells your body uses to kill off tumor). 
    3. So, ideally, you need to have an idea of what treatments you want to go for and plan before jumping in. Here are some pointers to remember:
      1. Consider doing immunotherapy after surgery and before radiation or chemotherapy. You may even consider pursuing immunotherapy right at the beginning, before surgery.
      2. Ask your surgeon to save as much tumor as possible. The actual tumor sample is very valuable for understanding exactly what you're fighting against, and also for use in potential immunotherapy treatments (helping your immune system identify and attack your tumor cells).  Work with your pathology lab before the surgery to preserve adequate tumor sample for future treatment or molecular analysis (by independent labs) etc.  CarisMPI is an independent lab that you can send tumor sample to, and they will analyse the sample to see what genes are abnormally expressed, that can be targets for supplements or chemo drugs.
      3. Ask the doctors about the possibility of infertility caused by radiation or chemo.  This may affect both men and women of child-bearing age and younger.  This may not be at the forefront of your mind right now, but it does have huge implications for the future.  Sperm or eggs can be frozen away before radiation or chemo.  Fertile Hope is a non-profit organization that subsidizes fertility preservation treatments.
      4. Ask for the preservation of blood samples when you still have the tumor. This may be used for immunotherapy analysis to see if you had any immune response to your tumor.
  6. Be Objective
    1. I cannot stress how important this is. When your medical oncologist—who may have decades of experience -- tells you "do this chemo or you'll be dead in a month", it's terrifyingly difficult to remain objective. Yet, you have to keep objective. You must ask for absolute statistics that shows the real efficacy of the chemo regimen. Likewise for radiation. Remember, oncologists have dedicated their entire life and career into that modality and are convinced it's the only thing that might save you. Again, for poor prognosis cases, you have to think out of the box.
      (update Sep 2010: We just talked with the husband of a cancer patient (who is a surgeon from Nigeria). She was told by conventional oncologists in Jan 2010 to go home, write her will and prepare to be dead within 3 months. She was denied chemotherapy or radiation. Well, at the time of meeting her at the Oasis of Hope hospital in Tijuana, Mexico, her tumor was smaller than before and it had been 9 months since she was given a non-negotiable death sentence)
    2. Let's say your oncologist tells you:- by doing this chemo regimen, clinical trials unequivocally show that 90% of people survive 5 years out. If it was me I'd probably do the chemo! 90% is a amazingly great number when it comes to cancer.
    3. Now, let's say, your oncologist tells you, by doing chemo, your 5 year survival has a 20% "improvement". What does "improvement" mean? What is the baseline survival (without chemo)? If 20% means a jump from 40% survival to 60% survival, that's relatively decent. If it means 20% of 40% (translating to 40%->48%) increase, then it' may not be as clear. Pay attention to the sample size of the trials used to get these numbers. The smaller the trial, the less meaningful the number. This is particularly important if your cancer is a rare cancer (like my wife's).
    4. Furthermore, many oncologists won't tell you things such as "chemo is controversial for your case". In fact, this was the case for my wife's cancer. About half of the conventional oncologists believe chemo has no or little benefit for her cancer. HALF! This information wasn't conveyed to us. We had to find that out by scouring scientific papers and clinical trial results ourselves (via my wife's academic access). This is what you need to do as well. It's hard but just do your best. You need to be real with yourself and objective
    5. Why? Why not trust your oncologist and just go along? Because there are very real consequences for your survival and quality of life. Your oncologist will probably never tell you that a significant number of patients die from chemo itself!! Yes it's true. Just before we started my wife's chemo, we read of a young lady who died of heart failure from doxorubicin in the very same hospital where my wife was to do her chemo. (we later found an ND who advised us to take CoQ10 to protect against that. We did so after finding academic research substantiating this). Another example is many cancer patients die from infections that go unchecked because their immune system has been wiped out from chemo. (the discussion boards I belong to periodically have caregivers informing that so and so has died not from the cancer but from an unchecked infection). Also, John Kanzius (who was working on a gold nanoparticle solution for cancer) died recently from pneumonia from chemo. Again, I'm sure oncologists mean well. I have a feeling that they aren't very forthcoming with this type of data because they're operating on the assumption that there is no other credible approach other than the standard of care. Therefore, since there's no other option, it's not going to help the cause at all to communicate such scary information to the patient. "Why scare the patient? We'll just make sure to tell the patient what to avoid, how to take care of himself to minimize risk". This is just my personal best-guess why oncologists often fail to clearly outline the risks. Another factor might just be a lack of time to go through something "less important" such as this - especially so if there aren't any other "credible options" anyway right?
      Personally, I'd much rather get all the objective data and decide for myself whether it's worth the risk. Especially so because my box is not limited to the conventional guidelines and standard of care. See -- you need to be able to make that mental leap and imagine a deadly situation that your oncologist won't tell you about (so as not to scare you). Then again, it depends the type of chemo you're getting, and specific dosages etc. Chemo induced death is very real. Do not take it lightly! 
    6. Again, there are no absolutes in cancer. YOU need to gather the pros and cons and then make an informed decision. If you don't, you run the risk of inadvertently weaken your immune system in return for a statistically negligible chance at eliminating the cancer with chemo/radiation. This may possibly worsen your condition and accelerate the cancer's growth
      (update Sep 2010: we met a patient from South Africa who's been fighting breast cancer. She rejected chemo because the statistics for 5 yr survival even with chemo were a measly 3%. However, she consented to post surgical radiation. What she observed was that her cancer spread much faster after radiation. I surmise this may be due to a weakening of the immune system by radiation)
  7. List of supplements worth trying       
    Here's a list of supplements that have scientific backing for cancer. They generally have zero or little side effects. I haven't got the time to provide the scientific links for all of these. I intend to add them. But for now, here's the list of things that we've researched that have real science behind it and are worth taking (note, I still strongly recommend you work with an alternative oncologist in case of potential drug interactions or counteracting any active treatment such as chemotherapy):-
    1. Curcumin :  Get the C3 brand. It was used in MD Anderson clinical trials. Curcumin is probably THE most researched anti cancer supplement. Tremendous number of biological pathways affected by it (positively of course). C3 brand has piperine to improve the notorious poor absorption. Look into taking it with fat for better absorption (like coconut oil).  We grind up the curcumin pills in a coffee grinder, add a tablespoon of dark chocolate bits (for fat), and add 1/2 cup of hot water to dissolve.  Adding cinnamon is nice too, makes it taste like Mexican hot chocolate.
      • Wife takes 6g/day. Clinical trials 8g/day.
    2. Vitamin D3 
      • Research this one for sure. Many alternative docs, and even some conventional oncologists (like at Roswell Park0 say you should get your levels up to 70-90ng/ml. Low Vit D levels are correlated with cancer, as well as other health problems such as diabetes.  My wife took 10,000-20,000 IU / day for many months to even make a dent in her levels. She was tested to be very low in the beginning. The Roswell Park researchers found that cancer patients generally have low D levels and furthermore, it takes much higher doses to get them up. Read more about Vitamin D here.
    3. High quality EPA/DHA (fish oil). 
      • Get high quality, molecularly distilled, no heavy metals. We use Carlson MedOmega (2x more expensive than regular carlson). This has higher EPA/DHA amounts that cheaper brands. At times, she took up to 3 tsp / day. Be careful not to use this before immunotherapy or surgery! (It's a blood thinner. It's also a powerful anti-inflammatory which may compromise immunotherapy)
    4. Coriolus Versicolor (PSP/PSK)
      • Lots of research / science on mushrooms for cancer. We were originally using Maitake Pro. Dr. Raymond Chang, an alternative MD who works with many cancer patients persuaded us to change to PSP/PSK. He believes the science behind PSP/PSK is much stronger than Maitake. PSK is supposedly widely used in conventional oncology in Japan, alongside chemotherapy.
    5. EGCG:  Mayo clinic has preliminary case study of 4 patients will real documented regression of leukemia with something between 4-8 cups of green tea / day. They were studied carefully. Unfortunately, as I said, nobody is going to sponsor a large trial of this because of the money problem. You can't patent green tea.
    6. Resveratrol 
    • Controversial (absorption / high degradability issue). But still worth considering. Many believe it's a wonder drug for extending life etc. It's a HDAC inhibitor (histone deacetylase inhibitors - they are a new exciting class of anti-cancer drugs). Broccoli contains it - so do many other vegs.
    • Longevinex makes an expensive resveratrol that's supposedly light / oxygen-free throughout the manufacturing process. They claim this overcomes the high-degradability issue. Sirtis Pharma was founded by a Harvard prof who is developing a synthetic patented resveratrol compound that supposedly surmounts this problem too. It was bought over for hundreds of millions but they don't have a drug ready yet.
  8. Diet and Lifestyle Strategy

    We wrote up strategies we've tried in this table.