Being a cancer patient in clinical setting

I find Dr. David Servan-Schreiber’s description of being a cancer patient to be very apt,

I entered a colorless world. It was a world where people were afforded no recognized qualifications, no profession. A world in which nobody was interested in what you did in life or what might be going through you mind. Often the only interesting thing about you was your latest scan. I discovered that most of my doctors didn't know how to treat me as a patient and a colleague at the same time. At a dinner party one evening, my oncologist at the time, a brilliant specialist I very much liked, also turned out to be a guest. When I arrived I saw him turn pale, then get up and leave after some vague excuse. Suddenly I had the feeling that there was a club of the living and I was getting the message that I wasn't a member. I began to feel frightened that I was in a category apart, a category of people defined primarily by their disease. I was afraid of becoming invisible. Afraid of no longer existing, even before dying. Perhaps I was going to die soon, but I still wanted to live fully up to the end. (David Servan-Schreiber, Anticancer: A New Way of Life. New York: Viking Penguin, 2008. pp.17-8).

Servan-Schreiber is a clinical professor of psychiatry at the University of Pittsburgh School of Medicine and when he was diagnosed with a brain tumor, he experienced being in a different world. I had an almost similar experience when I was with my oncologist in her clinic. She was not interested in the fact that I had studied theology in Boston, was a chaplain intern, had worked in a hospital setting, provided spiritual care and support for dozens of patients, and I am now feeling displaced as a cancer patient. She was not interested in my past, nor who I am. She was only interested in how soon I could get a CT scan for her to establish a new baseline (she said this repeatedly during our 2nd meeting), so that she could put me on adjuvant systemic treatment (she repeated this during our 1st meeting). I was just another cancer patient to her. Whatever I clung on to prove that I am a unique human being was in the process of being taken away in the clinic. At least, she did not ask my spouse to leave nor ask me to change into the hospital gown as my spouse and my street clothing were my last shred of evidence verifying my uniqueness as a human being. If I were to be in hospital gown and alone by myself, I might have felt like a faceless digit in the presence of my oncologist.

Top Ten Not so Very Helpful things to say to someone experiencing the loss of a loved one

I learned the following from my clinical and pastoral education program, and I thought it will be helpful to share with those who are trying to comfort others in needs (and I have pasted them on my Facebook notes on August 6, 2010).

Top Ten Not so Very Helpful things People Say to Someone Experiencing the Loss of a Loved One.

10. God needs him more than you do.
9. God gave him this disease in order to test you.
8. God never gives you more than you can handle.
7. God loves him so much that he's taking him home.
6. I know exactly how you feel, my cat died last week.
5. I'm sorry this is so bad for you because I love you and I know this is terribly hard on you.
4. Well, you would not want him to live in the shape he is in, would you?
3. We have to be strong so we can give the victory to Jesus.
2. You think this is bad! You should have lived through World War II.
1. So, do you think you'll re-marry soon?

Talking about cancer

The English writer Julia Darling was suffering from cancer when she penned this:

Be direct, say "How's your cancer?" Try not to say how well we look compared to when you met in Safeway's. Please don't cry, or get emotional, and say how dreadful it all is. Also (and this is hard I know) try not to ignore the ill, or to scurry past, muttering about a bus, the bank. Remember that this day might be your last and that it is a miracle that any of us stands up, breathes, behaves at all. (Julia Darling, “How to Behave with the Ill,” quoted in Adam Wishart, One in Three: A Son’s Journey into the history and science of cancer. New York: Grove Press, 2007. pp. 233. Please access http://juliadarling.co.uk/retro/behave.html for the full version of the poem.)

Adam Wishart whose father died of cancer wrote a book describing how his father coped with cancer and how the family was affected. While narrating his father’s cancer, he also blends in the history of cancer treatment which I find to be a delightful read. Here’s what he says towards the end of his book,

We need desperately, therefore, to learn how to talk about cancer and to regard it no longer as a painful taboo. There is an urgent need to do so, because each of us will one day be touched by the disease, as one in three people will be diagnosed with it within their lifetimes. It is time to understand that cancer is becoming a disease to live with rather than only die from. (Ibid)

Indeed, I think there is a need to learn how to talk about cancer, rather than pretending the illness is not there or affecting the one whom we love. I am not sure whether it is our Chinese culture’s emphasis on face that hushes discussion of the illness. It is by being honest and frank with one’s illness that one can continue to have the courage to face it and to walk the journey together with those whom he/she loves. I differ with Julia Darling about not getting emotional as it is only human to be emotional when his/her loved one is afflicted with terminal illness. I do understand the burden of the cancer patient to want to comfort those who are saddened and emotional. However, when friends and family members do get  emotional, it is an avenue for all of us to cry together, to embrace each other and to walk this tough journey authentically together.

But I believe it may not be necessary to disclose the illness to every friends as some are not in a state whereby they are ready to empathize and attune to their own emotion. Some lack the capacity for grief as they are accustomed to a life of stability and have been living in a facade of success. It is a risk to make one's illness known. It is a risk to make oneself vulnerable and not knowing the outcome of that risk. I believe taking the risk may be worth it if one holds the conviction that life is still beautiful despite the many flaws and ugliness, and the beauty is enhanced or manifested when the friend and befriended, when the lover and beloved choose to stay committed in their relationship even when faced with the prospect of imminent separation. However, when either one chooses to forego this commitment, it is the cost of the risk one has chosen.

Decision to defer my CT scan to Dec 6

I have been reading more about cancer from books and medical journals in the last one month than in other month. I found out from a study in New England Journal of Medicine (July 1, 2010 issue) that exposure to CT scan can increase risk of cancer by as much as 1 in 80, i.e. 1.25%. This is contrary to the information given by my oncologist. When I was a chaplain intern at Massachusetts General Hospital I learned to be an advocate for my patients. I remember there was a patient at MGH who preferred not to continue treatment and his request was ignored by his medical doctor, and I brought this issue up to the medical practitioner in-charge of him and we deliberated over this together. There was another patient who had lung infection complicated by urinary tract infection (UTI) and I had to check with the nurse in-charge of him whether his UTI medication was included in his take-home medication package. Now I have to be my own advocate by reading books and journals about the paradigm which Western medicine operates and the possible protocol. I also discovered that my type of kidney cancer is considered rare (Type II papillary renal cell cancer to be more exact) and my treatment option is limited for my stage of kidney cancer. I also learned about medical studies done on anticancer food could not make it into the mainstream medical scene for obvious reason that these food cannot be patented. For the sake of comparison, a relatively minor anticancer medicine such as Taxol brings in a billion US dollar a year to the company holding the patent according to David Servan-Schreiber’s Anticancer: A New Way of Life.

I have been informed last month that I will be given targeted treatment through drug that is designed to inhibit the growth of cancerous cells (technically called anti-angiogenesis drug, and not to be confused with chemotherapy). When the drug loses its effect within few months as the more resistant cancerous cells become dominant, I will be given another type of drug till the option is exhausted, and the cancerous cells will be uncontrollable after that. This treatment will typically last for a year to a year and a half. If I were to pin my hope on Western medicine, my best hope lays in the invention of a gene-targeted drug for my type of kidney cancer that would stop the further replication of my mutated cancerous cells. This type of treatment called the gene-targeted treatment was first successfully pioneered for chronic myeloid leukaemia patients with the drug Gleevec in 1999. Since this type of gene-targeted drug for my kidney cancer is not available yet, I am sticking to regular alternative treatment consisting of Chinese herbs, finger pressing of meridian to stimulate blood circulation, practice of Tai Ji, diet of anticancer food, and natural supplements to boost immune system and to combat cancer. As I am not sure how much of this alternative treatment will work for me, I have decided give myself more time to try it out and have postponed my original CT scan scheduled yesterday to Dec 6, and my appointment with my oncologist to Dec 13. Added on to my arsenal of tool is learning to attune to my psychological state and to break free from feeling helpless. I understand from Servan-Schreiber’s Anticancer that our psychological state plays an important role in managing cancer and as a clinical professor of psychiatry at the University of Pittsburgh School of Medicine, Servan-Schreiber has clinical studies to support his theory which is still considered new to the mainstream oncologists.

I believe Professor Vincent T. DeVita’s textbook Cancer: Principles & Practice of Oncology has set the tone for most oncologists. This author discovered the cure for Hodgskin’s disease by combined chemotherapy and is the former director of the National Cancer Institute in U.S. According to Servan-Schreiber, the latest edition of the textbook does not have a single chapter on the role of nutrition in the treatment of cancer or the prevention of relapses. This further helps me to understand why my oncologist is not likely to explore alternatives outside the National Cancer Center’s protocol. If you could, please continue to pray for my physical healing and spiritual healing (physical: cancer; spiritual: brokenness I experienced). I pray that my alternative treatment will be effective and my coming CT scan will testify to it. Even if that does not happen, may I continue to spend my time meaningfully with God, with God’s community of people, with family members, and be an instrument of blessing to others. As a result of being a cancer patient, I found myself with greater empathy and able to connect to others who have/had illness themselves or are affected because their loved one is suffering.

Coronary artery and plant-based diet

(T. Colin Campbell, The China Study: The Most Comprehensive Study of Nutrition Ever Conducted. Dallas, Texas: Benbella Books, 2006. p. 128.)

A patient with a heart problem at forty-four years decided to try out Dr. Caldwell B. Esselstyn, Jr. ‘s dietary program without any cholesterol-lowering medication, and after thirty-two months, this patient reversed his heart disease and lowered his blood cholesterol to 89 mg/dL. The picture on the left section shows his coronary artery before switching to the plant-based diet. The one on the right shows the same artery opening up after adopting a whole foods, plant-based diet. Dr. Caldwell has been doing studies of patients whose blood cholesterol changed after adapting his recommended diet since 1985. By 2003, patients in his studies groups recorded forty-nine coronary events prior to a whole foods, plant-based diet, and zero events for those who adhered to a whole foods, plant-based diet. This is another evidence how switching diet could radically change the disease. (From Campbell, The China Study, pp. 127-9)

Mouse with aggressive tumor and without

(David Servan-Schreiber, Anticancer: A New Way of Life. New York: Viking Penguin, 2008. pp.112)

Both mice without immune system were injected with human lung cancer cells by Richard Beliveau’s research team at Sainte-Justine Children’s Hospital, Montreal. One mouse developed aggressive tumor, while the other had the tumor in check. What’s the difference in their diet? The one that had the tumor in check was given a diet of brussels sprouts, broccoli, garlic, scallions, turmeric, black pepper, cranberries, grapefruit, and even a bit of green tea. Its proportions were calculated so that the diet matched what a human could take in during an ordinary day: 100 grams (4 ounces) of cabbage, 50 grams (2 ounces) of blueberries, 2 grams (0.07 ounces) of tea, etc. The group of mice being fed with anticancer food had their tumors developed more slowly. Now we do have documentation on empirical studies of the effect of anticancer food in the lab.

Being comforted by the late preacher Ng Eng Eng (黄瑛瑛传道)

I am very grateful to the late preacher Ng Eng Eng (黄瑛瑛传道)  for penning down her struggles and prayers with breast cancer before she died in 2005. I found comfort and strength in reading her journal. I am asking some of the questions she had asked, I am praying for the same healing she had prayed for, and through her journal I know I am not struggling alone. I do not know why I have cancer just like the late preacher Eng Eng did not know why she had hers. I feel guilty for having unhealthy diet in the past just like she felt years ago. I am drawn to the natural therapists the same way she did though we differ in content. Even though we are separated by space and time, I feel connected to her whenever I read her journal. It is almost like she is talking directly to me. If the Everliving God is comforting me, the late preacher Eng Eng is the avenue whereby God is comforting me. I am indeed not alone in my journey.

Meeting with my oncologist

Those who advocate food and nutrition to manage cancer are not in the mainstream, including Dr. T. Colin Campbell, who is now an esteemed professor at Cornell University in the U.S. But this alternative view is slowly catching on. Unfortunately, my oncologist is in the mainstream and follows a strict protocol on what a kidney patient should do. When I consulted her last Monday 18 Oct, at National Cancer Centre, she insisted me to go for a CT scan to establish a new baseline immediately, so that she could put me on a regime of standard adjuvant systemic treatment. My confidence in her eroded when she denied any health risk involved when exposed to a second CT scan within three months of the first (CT scan is a kind of 3D X-ray and of higher dosage than the typical 2D chest X-ray). When I asked her whether there are other ways to detect tumours in my body, she said yes but did not explore that alternative. She repeated to me that she had to establish a new baseline based on a new CT scan. My recent tumour markers (from blood test) taken last week show my major organs to be free of cancerous cells but she did not incorporate this data in our discussion. My urologist Prof. Cheng did an ultrasound scan on my abdomen for presence of tumour two weeks ago and there was none, but this was not mentioned in our conversation either.

I wanted to know why my white blood cell count is still normal inspite  of the cancerous cells in my body and she suggested that kidney cancerous cells could not be detected from blood test. She made me more puzzled by scheduling me for another blood test before my next appointment with her. I was also curious how Prof. Teh (a kidney cancer researcher)'s research on my tumour cells would affect my chemotherapy and she told me she was unaware of the outcome and I would be prescribed the standard treatment plan. As I am still young, the treatment will be intensified, i.e. instead of taking one pill per day, I will be taking three pills per day. I might experience side effects such as low immune system and/or low red blood, but she did not inform me of the possible peeling off of skin on hand and feet which happened to 30-50% of the patients given this drug in the U.S.

I felt frustrated talking to my oncologist. She was giving me standard answer and following a standard guideline on what she should do. I would have been more comfortable if she had been honest with me about what she knew and what she did not know, and was willing to explore alternative with me. It seems like she was representing the interest of medical establishment and I was more like a digit to her. My consultation with her was a far cry from my urologist who presented me with choices, was honest with my risks, the types of risks and the percentage of risks. I managed to postpone my coming CT scan to three weeks later (on 8 Nov) instead of one week from now, and my next appointment with her falls on 15 Nov (Mon).

I am not sure whether to proceed with the CT scan. If I do proceed and if the scan shows my cancerous cells to be localized in one area, i.e. my neck lymph nodes, should I still go for chemotherapy or should I wait for the cells to shrink by themselves? Chemo is usually for cancerous cells that have spread beyond primary site and not ideal to remove by surgery. If indeed my remaining cancerous cells are not localized, is chemo really the best option? Should I seek another opinion? If yes, which oncologist? I am praying for the inner peace to make the most appropriate decision.

Three different approaches to cancer treatment

I discovered three different approaches to cancer treatment. The mainstream, i.e. Western medicine, believes that cancer can happen to anyone, and the only way to cure it is to kill it. The other end of the spectrum believes that cancer is a result of your diet and lifestyle. If you could change your diet and lifestyle, you could halt and reverse the growth of cancer. However, this is not the mainstream yet. The middle-path, i.e. Chinese medicine, is less conclusive and will complement the Western treatment by boosting the Qi (气) which is the energy in the body in order to combat the disease better.

The Singapore National Cancer Centre is in the mainstream. The natural therapists are on the opposite end. I have met few natural therapists, and one of them, Dr. Willy Wang who did research in human tissues previously and who pioneered his health product known as Fit Solution, studied my most recent health screen report suggests that I need not go for chemotherapy. According to his theory, the reason why cancerous cells occur across multiple sites in the body is not because those at the primary site metastasise and grow into another location, but the weakening of the overall immune system and the need for the lymphocytes (the B-cells and T-cells that attack foreign bodies and infected cells respectively) to concentrate at one site. As our cancerous cells usually stay dormant, when the overall immune system weakens either through chemotherapy or other agents, we are giving the dormant cancerous cells a chance to become active. In another scenario, if the lymphocytes are drawn to one location, such as during a major operation when the operated site is exposed to bacteria, the other sites will have relatively less T-cells and B-cells and thus increases the likelihood of cancerous cells to become active. He suggests this is why many cancerous patients experience metastasis after chemotherapy, not before. This is the first time I heard such theory or perhaps simply an hypothesis with no supporting empirical evidence.

I also came across T. Colin Campbell's The China Study: The Most Comprehensive Study of Nutrition Ever Conducted, published in 2004 that documents strong correlation between animal-protein and cancer growth and other diseases. In his book, I am delighted to read that in studies done by Sir Richard Doll and Sir Richard Peto of the University of Oxford back in 1981, they concluded that 2-3% of all cancers are attributed to genes. Dr. Campbell did a wide range of research related to cancer for twenty-seven years with funding from U.S. National Institutes of Health, the American Cancer Society and the American Institute for Cancer Research that shows conclusively diet's relationship to cancer, and his research surprisingly led him to examine studies related to heart disease, autoimmune diseases, bone, kidney, eye and brain diseases. He found that those whose blood cholesterol were below 150 mg/dL did not report any heart disease (i.e. stroke, chest pain and heart attack), while those between 150-200 mg/dL showed 35% chance of having heart disease. By switching to a diet consisting of whole grains, fruits and vegetable, patients' blood cholesterol improved and the heart disease rate dropped dramatically. Dr. Campbell did a comprehensive study with other researchers that documented Chinese diet in rural China, compared their data with typical American diet to nail down the types of diet associated with cancer and they did experiments with rats to confirm their hypothesis. As this book is heavily substantiated with empirical studies, I would suggest this to be a MUST READ for anyone who is very concerned with his/her health.

The latest research according to Dr. William Li on http://www.ted.com/talks/william_li.html (a 20-min presentation back in Feb 2010 and in plain language) shows that we can indeed eat to reverse cancer. All of us have cancerous cells within our bodies. Even if the cancerous cells are activated due to mutation as we age, so long as the cancerous cells are not given the environment to grow, they will stay dormant. According to Dr. Willy Wang and another natural therapist Tay Swee How, another factor that contributes to cancer growth is the body's pH level. If one's body is more acidic, it is more likely for cancerous cells to thrive. So, we have to include food that helps to alkalise our body when broken down in the body in our daily diet. Dr. Susan E. Brown's The Acid Alkaline Food Guide provides simple explanations of pH effects on body and a long list of acid/alkaline food.

Loopholes in local advertisements

Recently, I have noticed loopholes in local advertisements, and I would like to highlight some of the pitfalls so that the viewers can be more discreet in selecting products/services.

One of the slimming advertisements claims to help the consumer shed 12.8 kg in ten weeks, assuming the consumer loses 1 kg per week. The formula in the slimming pill is supposed to suppress appetite by a certain percent while burning more calories by a certain percent. The numerical values seem to give the impression that this product has been scientifically proven or else how does the statistics come from? But the numerical values are no where supported in the advertisement. The spokesperson of this product is a well-known MediaCorp (Singapore's only media corporation) artiste and she made a few fallacies in representing this product. She claims to lose 2 kg in two weeks, and she has experienced no side effect after incorporating this product into her diet. Let's examine some of the fallacies in her claims:

1. The product claims to help the consumer shed 12.8 kg in ten weeks, while she lost 2 kg in two weeks. Does that mean that in the other eight weeks, she did not experience any loss in weight? Or does it mean that she consumed the pills for only two weeks? If either one is true, she cannot really speak on behalf of the product.
2. This spokesperson did not state how long she has been consuming the pill. This is important because the consumer who is taking the pill has the right to know any short-term side effects and long-term side effects. Previously, another local actress Andrea De Cruz took slimming pill containing a variant of fenfluramine, an appetite suppressant, for some time before her kidney failure in 2002, and she was only 28 years old then. So, when this spokesperson claims to experience no side-effect, she should add an additional clause of "after on this pill for how long".
3. This spokesperson is already slim in the first place before representing the product. I would not have noticed any loss of weight even if she did not lose 2 kg. If there was a contrast like her weight before taking the pill consistently for ten weeks and after, this advertisement would be slightly more credible. 
4. If there were more participants testifying to have experienced weight loss during the trial period and listing all side effects during and after the trial period (which should include blood test for all organs functionality), then this advertisement would have passed its credibility test. According to Professor Leung Ping-chung, chairman of the Institute of Chinese Medicine at the Chinese University of Hong Kong, "What can be O.K. for a month can cause serious damage over the long term." (Refer to http://www.time.com/time/magazine/article/0,9171,333902,00.html#ixzz127CkSZ5g). This means that no side effect now does not imply no side effect in future.

As such, this slim-pill advertisement is not credible even if a local celebrity has been paid to represent it as its claims are not backed up substantially. This is not the only local advertisement with loopholes. There is a hair loss treatment center that engages two MediaCorp artistes to represent their center. However, I do not know of any news when these two artistes lost their hairs significantly (or perhaps they did not disclose it). There were no photos showing how their hairs looked like before treatment and after treatment. This advertisement is so funny because these two artistes seemed to have been picked up randomly to represent this treatment center.

I would suggest that in any advertisement that seeks to showcase the effects of its product, it should compare the participants before and after consumption/treatment. The participants ought to be those in need of the service or product rather than good-looking celebrities who are not in apparent need of this service/product. In any scientific studies, there will always be a group of participants studied over a period of stated time in order for the statistics to be deemed credible. In addition, there will almost always be additional clause like under what condition the effect is not being observed. If the local advertisement wants to employ statistics, it should adhere to a stringent requirement or else it should be classified as pseudo-science. I wish the local advertisements could be more critical in marketing their products and services.

If I were to vote for advertisements which are credible, I think my highest vote would go to Sensodyne and Colgate toothpaste (disclaimer: I do not earn any commission from Sensodyne or Colgate). Sensodyne claims that its product is effective against pain from cold water. Six participants with sensitive teeth were selected to rub the toothpaste against their teeth for 60 seconds before drinking cold water or eating ice cream, and their reactions were recorded (and of course, edited). As each of them verbalized the effectiveness of the toothpaste differently, this adds credibility to this product. Colgate on the other hand claims to be effective against bacteria on teeth. A Colgate representative asked a participant to have his/her teeth scanned for bacteria before using its toothpaste for a day and after using it in its advertisement. The result is obvious, and as the participant in each Colgate advertisement is different, this adds credibility to the product. I would suggest this type of advertisement to be the benchmark for any advertisement based on scientific claim(s).