Number 4 Cancer Recurrence and Intense Psychological Distress

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 4 Cancer Recurrence and Intense Psychological Distress

The recovery phase from cancer is like no other type of recovery from other diseases because of the unpredictability of cancer. Recovery from most illnesses require a period of physical healing, but over time the patient usually returns to normal and can get back to every-day life. However, there are unfortunately several aspects related to cancer recovery that are unique to cancer itself. Of course there is a period of physical healing because more often than not the treatments for cancer do disrupt the normal function of the body. Another unfortunate aspect to the healing process has to do with the psychological adjustments patients must make during this time. The common definition of being cured of cancer is to be disease free for 5 years. However during and after that period the patient must psychologically deal with the fact that the cancer may come back. This is called “recurrence” and is the source of much fear and anxiety for many recovering cancer patients. This emotional condition begins immediately after the “cancer free” diagnosis and is very intense within the first year. Many patients report that over time the fear and anxiety becomes less intense. However, there are several, what would be called “triggers” that reignite severe bouts of this condition. The first and most frightening would be the appearance of the same symptoms from the initial diagnosis. Other events that may occur years after being cancer free that may induce these emotional responses are the anniversary of the diagnosis, surgery, or the day the treatment ended.

There is another stage of psychological stress that many recovering patients have to endure that in effect, draws in all of the previous emotional problems that began after the initial diagnosis. This stage appears when the patient actually does have a recurrence of their cancer. Many people who’ve never actually experienced having cancer, and then have been cured of it, only have a vague or second-hand view of what occurs during the first five or 6 years after a cancer-free diagnosis. Basically their lives change because of the after-effects of having cancer. Many of these are psychological, but quite of few of them have to do with financial, social, or family-related issues. At the time of diagnosis and just prior to treatment, the patient must make decisions based on the information gathered from the physician and other outside sources. It was found that there are four methods associated with this decision-making process and they are: information seeking, information processing, ruminating, and advice following. It was determined that the patients who made exclusive use the first two strategies (information seeking and information processing) were more likely to cope with the stress of a life-threatening cancer than those who used the advice-following strategy alone. The reason why this information is important is because when the patient experiences a recurrence of their disease the first thing they think about is this period of decision-making prior to treatment. They often blame themselves for not making the proper decision. This entails feelings of guilt because apparently they feel as though the have failed their family, friends, and physician. After these initial psychological events occur, all of the other emotional stresses associated with the diagnosis come to the surface of the patients mind. It is apparent that at almost every stage of cancer there are psychological stresses that have the ability to not only contribute to a poor quality of life, but also interfere with the biological process of recovery from cancer. These issues are dealt with in the field of psycho-oncology and are of critical importance to the overall outcome of a cancer diagnosis. As far as recurrence is concerned, much more research must be done to efficiently use psychological/psychiatric intervention in order to address the massive psychological disturbance caused by the recurrence of cancer.

Number 3 Why Stress Control is Important During Cancer Treatment

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 3 Why Stress Control is Important During Cancer Treatment

For many years it was suspected that emotional stress interfered with the body’s ability to heal. However, recently the scientific facts concerning this phenomenon have revealed the biological systems that are most vulnerable to emotional stress. It was recently determined that the ability of wounds to heal was adversely affected by psychological stress experienced by the subject. Prior to this study there was documented proof that increased anxiety prior to surgery was associated with a slower and more problem-ridden postoperative recovery. Around this same time a controlled study was performed on the arms of women who were determined to have different levels of psychological stress in their lives. A suction device generated blisters and then the blister itself was contained in a plastic band, which contained blood serum from the test subject. After 5 days the serum that coated the blisters was analyzed for what is called proinflammatory cytokines. These bioactive proteins aid in wound healing by restructuring the tissue and inducing immune cells to the site to prevent infection. In addition, they also play a powerful role during the immune response to cancer. The women were separated into psychologically stressed or not stressed in their personal lives by questionnaires. It was found that the women who were the most stressed in their personal lives had altered amounts of these proinflammatory cytokines associated with their wound.

As far as a direct link between stress and development and progression of cancer is concerned, the observation in leukemia was that the amount of stress and anxiety a patient experienced was directly related to the prognosis (outcome) of their cancer. In other words, more emotional stress led to a progression of the leukemia. In several studies an immune cell called a NK (natural killer) cell was found to be responsible for killing leukemic cells, especially after anti-leukemic bone marrow transplantation therapy. Scientist used this information to demonstrate that leukemia progression was observed in animals that were stressed. Not only did the leukemia cells grow faster when compared to non-stressed animals, but also their NK cells were temporarily unable to kill the leukemic cells. These negative effects on killer cell function were found to be mediated by epinephrine and several other bioactive proteins released during stress. In human studies of this phenomenon, where increase patient emotional stress leads to cancer progression, researchers have not only reversed the stress-related cancer progression by psychotherapy, but have also identified the increased presence of a cell that specifically suppresses immune responses to cancer in emotionally stressed cancer patients. This was a randomized clinical trial with stage II and III breast cancer patients where psychological intervention was used to reduce stress. The results in the group that received psychological counseling consisted of increased immune function, less recurring disease, and improved survival/quality of life. Using stress questionnaires, two groups of patients were identified, which were those with high stress levels and those with low stress levels. Blood was collected from each group and what was found was that the high stress patients not only had elevated numbers of myeloid-derived suppressor cells, but also had elevated levels of suppressive bioactive immune proteins called lymphokines. For the first time, under controlled conditions, the biological relationship between emotional stress and the progression of cancer has been demonstrated in humans. Studies such as these one point the way towards newer approaches to the successful treatment of cancer by altering the mental state of the patient. How this is done and when is of critical importance to not only the success or failure of the treatment, but also recovery from the disease.

Number 2 Emotional Aspects of Cancer Diagnosis and Treatment

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 2 Emotional Aspects of Cancer Diagnosis and Treatment

It would be very difficult to accurately describe the nature of the emotions of a person who has just been given a diagnosis of cancer. The reason for this is that the human range of emotions is vast and every individual uses a different combination of those emotions to cope with such news. However, several common emotional states do affect everyone in this situation. Initially there is disbelief/denial because usually the symptoms, as mentioned above, didn’t seem to warrant such a serious diagnosis such as cancer. Once the diagnosis is accepted fear takes over and my spark other emotions such as sadness and depression. Much of this sadness has to do with family and friends because once the patient realizes that when they are informed about the diagnosis, they too will become sad. Since fear is such a strong emotion it tends to amplify other less intense feelings. In this case the feelings of disbelief and denial are turned into form of suspicion that is centered on the truthfulness of the diagnosis. Often people in this situation wonder if they have been told the complete truth about their diagnosis. These emotions tend to feed off of each other until there is the full realization by the patient, that they indeed do have cancer. The next common stage is involved with “self”. Questions such as “Why me?”, What did I do to deserve this?”, and “I always have bad luck?”. This stage is associated with withdraw because of the egocentric nature of the response. The isolation is due to the fact that they now know that they are different from other people, who probably don’t understand what they are going through.

Sometimes the source of the emotional stress is cancer specific. For instance it was found that many lung cancer patients experienced guilt and shame. This was because they were diagnosed with disease that from society’s point of view was self-induced. Therefore during the treatment, many patients experienced social anguish due to the “stigma” of their diagnosis. Another cancer-specific emotional stress condition is found in breast cancer patients. Many of these patients tend to exhibit repressive behavior, which is related to the denial stage mentioned above, but affect the ability of the patient to psychologically cooperate fully with recommended treatments. Breast cancer is one several cancers where the emotional state of the patient before, during, and after both diagnosis and treatment has been extensively studied. Many breast cancer patients must make major psychological adjustments in response to the fact that they have the disease. Some of these adjustments associated with general distress were specific for the malignant form, but not the benign form of breast cancer. There are also sources of emotional distress related to body image after breast reconstruction surgery. In addition, a common form of stress associated with trauma victims, post-traumatic stress syndrome (PTSS), is a frequent emotional state experienced by breast cancer patients. One of the reasons this type of analysis of cancer patient stress is important is that stress not only affects the mind, but it also affects the body.

Cancer patients experience the most pervasive emotional states during the treatment phase. The reasons for this are related to not only the physical discomfort associated with many of these treatments, but also the uncertainty associated with their effectiveness. One of the most significant and harmful emotional states a cancer patient has to deal with is the combination of anxiety and depression during treatment. Depression alone is a major contributor to premature death among these patients. It not only increases mortality, but also can slow-down recovery. Even though depression affects a significant percentage of patients during treatment anxiety during treatment tends to affect the quality of the personal lives due to the focus on family members. In many cases the increase in both anxiety and depression levels was directly related to increases in pain associated with both the cancer and its treatment. Anxiety-driven behaviors include lack of social functioning, difficulty breathing, sleep disturbances, and loss of appetite. Depression on the other hand included the symptoms of anxiety, but also manifested itself physically with symptoms such as nausea, vomiting, pain, and constipation. Again these emotional states tend to not only interfere with recovery, but also the ability of the patient to properly inform the physician of changes in their physical status as a result of treatment. From the information provided it is apparent that these emotional states cancer patients experience are critically important to the outcome of their treatment. An exploration of physical affects of the emotions experienced during this period is warranted. However, since the evidence concerning the link between the emotional state of the patient and the effect that it has on treatment and recovery is so strong, it has been recommended that an assessment of the patient’s ability to mentally adjust to treatments be done at the same time the treatment assessment is being done.

Number 1 The Symptoms and Diagnosis of Cancer

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 1 The Symptoms and Diagnosis of Cancer

This aspect of cancer is the most innocuous of all. Many of the symptoms of this disease start out in a very benign way. It maybe just a pain somewhere or a bit of nausea, slight lightheadedness, blurred vision for a while. Occasionally there may be a rash or swollen glands, numbness, or vertigo. The list is extensive, but I think you get the idea, which is that many times the symptoms of cancer are masked in run-of-the-mill minor physical aches and pains we experience almost on a daily basis. What makes the symptoms of cancer different from the day-to-day aches and pains? The answer to this question is related to the nature of cancer itself. Cancer is the never-ending abnormal growth of previously normal cells in our bodies. The key words here are “never-ending abnormal growth”. So unlike those nagging day-to-day aches, pains, rashes, occasional dizzy spells, which come and go, but usually go, the symptoms related to cancer are persistent. They may lessen at times, but like cancer never go away and usually increase in intensity.

Some symptoms of cancer such as swollen glands and sweating with forms of leukemia are a direct effect of the growth of cancerous cells. In this case lymph nodes swell because the lymphocyte is the cancerous cell and expanding numbers of them take-up residence in their “home”, which is the lymphatic system containing the lymph nodes. The sweating is a natural by-product of rapid lymphocyte cell division. This occurs when we have viral or bacterial infections. However may other symptoms of cancer are secondary symptoms caused by the immune response to cancer. For instance with melanoma, which is a deadly form of skin cancer, the immune system attacks the cancer and as a consequence of this attack normal cells are damaged in the process. Melanoma cancer cells are derived from a normal cell called a melanocyte. These are pigment-producing cells that, after being stimulated with light, inject nearby skin cells with melanin, which is the pigment associated with a “tan”. Generally, the cells become cancerous through a series DNA repair mistakes and begin to grow out of control. The melanocyte is a unique cell because it is related to the cells of the nervous system. As these cells become malignant they retain some of normal proteins as well as the cancer proteins the immune cells recognize. Once a cellular immune response against the cancer is initiated some of these normal proteins are recognized as cancer proteins and as a result the immune system begins to attack normal cells as well. Therefore, some of the symptoms of melanoma are white patches forming in the skin, which is called vitiligo and a very painful symptom called peripheral neuropathy. These symptoms are called cancer-related “autoimmune episodes”. The vitiligo, which can be an autoimmune disease without the presence of melanoma, is caused by the immune system attacking and killing normal melanocytes. However peripheral neuropathy, which is nerve damage and the result of an anti-melanoma immune response is almost always associated with the occurrence of melanoma. Other indirect symptoms of cancer are the over secretion of normal cellular proteins, which are detected by blood test. The reason for this is what was mentioned above where the cancerous cell still possesses some normal functions, but now that the cells are growing at a rapid rate those normal functions are exaggerated. These are just some examples of the nature and cause of cancer symptoms, but how they are recognized and diagnosed as cancer symptoms is the most important aspect of this discussion.

Most people often have no idea that they have cancer prior to its diagnosis by a physician. Often what occurs is a change their health status or the identification of a known cancer-related symptom or event. An example of the latter would be a lump discovered during a routine breast self exam. This type of awareness of cancer is called “conscious detection” and the former, “passive detection”. The passive detection of cancer my include symptoms such as fatigue, nausea, pain, and a long list of other symptoms, which could be linked to a myriad of other health problems. However, it takes time to notice whether the symptoms are just passing or if they are persistent. This phase is referred to as an “appraisal delay”. Understanding and responding to these symptoms is in part based on an individual’s ability to determine if they are serious enough to decide to seek medical advice. This is another stage called “illness delay”. This is followed by another period where the individual must act upon the decision to seek medical care and is called a “behavioral delay”. There is a “scheduling delay” concerned with actually making the appointment to see the doctor. The final delay is the “treatment delay” and that is the period between the first doctor’s appointment and first treatment of the disease. The time between the initial recognition of cancer-related symptoms and treatment is a critical period in time. The above-mentioned delays often occur during periods of time where the cancer is at a stage that if detected early, can be successfully treated. However, as mentioned above, if these delays are prolonged the cancer may have an opportunity to spread (metastasize) throughout the body, which makes treatment that much more difficult. Because of this, the successful treatment of an initial cancer is dependent on two factors. The first is an increased public awareness of cancer and it’s symptoms and the second factor is an improvement in a physician’s ability to detect cancer in these patients

7/14/11 From Test Tubes to Ink Pens and a Couch.

Ever since I was 13-years old I wanted to cancer research. From that point on everything I did was pointed in that direction. I have two admirable traits. The first is that I am a very determined person and the second one is that I’m very patient. Those two things kept me focused on what I had to do to get where I wanted to go. That place was in the lab doing cancer research. After graduating from high school as a Pre-Med student, I went to Villanova University and became a Science Major. I did this because I didn’t want to be a physician, so skipped over the Biology Major thing to the utter amazement of my friends. The reason for this was that was the fact that the Science Major curriculum was second in difficulty right behind Chemical Engineering. Even though it didn’t matter to me, but my classmates couldn’t understand how I could party with them and still take differential equations and physical chemistry. Frankly, I couldn’t understand it either, but it was fun. Anyway, I survived Villanova and got my first cancer research position at the Wistar Institute on the University of Pennsylvania’s campus. It was a mouse cellular immunology lab, where I learned what became my research “bread and butter” so to speak. That was setting up models of the immune response to cancer outside of the body. This made it much easier to study the role of different immune cells and proteins involved with the response without the interference caused by the rest of the body’s cells. A couple of years later I met this incredible cancer doctor (oncologist) at Penn’s hospital and he saw patients that had melanoma. This was so cool because after he hired as his Research Associate he said, “Here’s the lab, I have a lot of patients to see, and I’ll talk to you later.” It was great because I had complete autonomy over the lab and the research.

Needless to say, aside from the four years I spent at Villanova, the next fifteen years were some of the best years of my life. During that time our lab was the first lab in this country to not only accurately describe the immune response to melanoma, but also determine what proteins on the surface of the cancer cells were used by the immune system to attack them. We were completely funded by the National Institutes of Health (NIH) the whole time. It’s really hard to explain what that period of my life was like, but both my professional and personal life was very exciting. Then I decided to stay at Penn and get my PhD in Immunology. I was a full-time student and a full-time employee at the same time. I was only one of two people who were ever able to do that in the history of our graduate department. As a matter of fact the other person who did that was my co-worker Jeannette. After graduation I said my provisional farewells. They were provisional because I ended up coming back to Penn twice for two separate positions for an additional 5 years. I continued to do cancer and some AIDs research for another ten years or so until the Iraq war started and funding from the NIH got sparse. The one thing about those thirty years was that I met and got to know over 300 cancer patients. Most of them I met while they were being treated in the 3 hospitals I did research at, but many of them were from my family and the families of friends. The people who knew me also knew that I did cancer research and would ask me to go and see their loved one and/or their doctor. I did this hundreds of times and I’m still doing it now. What I’d do is go back to the patient or family and try to translate some of the technical medical terms onto a language that they could understand. You’d be surprised how difficult it is to understand, especially if you’re under stress.

Back then I was faced with a major decision about my life. Since I could no longer get my own grants I’d have to work for someone else, which I was and still unwilling to do. Even though most of the cancer patients I mentioned are not here today, I just couldn’t walk away. The reason why is because many of them gave me the strength to become what I am today. They were very encouraging to me at times when I needed encouragement like when I was in grad school. They would encourage me to keep working and do a good job. This request wasn’t for them I think, but for the thousands after them that would be diagnosed with cancer. Therefore I decided to become and author of books about cancer, but it came with a price. I had to give-up everything and I mean everything. The place I lived, my car, my possessions, and even my cats. I became homeless for a time, but I started to write and decided to get a masters degree in Liberal Arts at Widener University. I just published (“Immune-based Cancer Treatment: The T lymphocyte Response”/Amazon.com) the first of three books in February and it’s about the cellular immune response to various types of cancer. The first half of the book is written simply, but it gets progressively more complex as you go further. I wrote the book for immunology students in college, grad school, or med school who might be interested in cancer immunology as a career. Since reasonably educated people can read it, I also intended it to be read by cancer patients because it discusses a new type of cancer therapy called “Immunotherapy”. I think it’s the future of cancer treatment and I want patients to be able to understand how it works and if it’s appropriate for them. I have two more completed books. One is an autobiography that has amalgamated cancer patient short stories within each chapter. The other is a fiction book that’s set in the future. It’s about a brilliant young man and his sister (Alan and Maggie). Both of them are mentally gifted and Alan, now a young (17 year-old) Harvard grad discovers, during his first year in grad school at Penn, the ultimate cure for cancer. He’s quite anti-establishment and decides not to turn it over to Penn, where it would be regulated by the government and sold by a pharmaceutical company. Instead he decides to give it away for free. He takes off in his flying car and with the help of this friends (which includes an artificially intelligent computer named Albert) and sister Maggie cure hundreds of people with terminal cancer all over the country. Eventually, after a cross-country chase by the government and the Pharmaceutical companies, he gives up. He becomes and American hero after he’s pardoned by the President.

This was the most fun I ever had writing anything. It just came out. I put my hands on the keyboard and typed. I’d go back to edit it and couldn’t believe I wrote it. Sometimes, I wouldn’t even remember writing some of those pages. It was just amazing and the most fun I’ve had since I stopped doing experiments. Anyway, I’ll be done with this Masters program at the end of this year (2011). I think the next thing for me to continue to try and help cancer patients. My next move will be to get another PhD, but this time in Clinical Psychology. Obviously, I’d want to major in oncology. So in four years, I’ll be able to counsel patients and their families about just how to understand and deal with this disease we call cancer. Now the final thing you might be asking yourself is: why did I write all of this? That’s a good question and the answer is that I just wanted to let people know that it’s all right to change careers. Yes it is scary, but as long as you know where your going and where you came from it will be just fine. And besides it’s exciting.