"You've got Prostate Cancer" - those words struck terror into the hearts of every man and his family who has been given that diagnosis. Apart from the fear of death that immediately is manifest, we are immediately thrown into asking ourselves "What do I do now?!" "What do I need to know to fight this disease?" When you're a doctor, do these questions arise at all or are the solutions easier? We have the unique opportunity and honor to speak this month with Dr. Richard Payne, who is the Director of the Institute on Care at the End of Life at Duke University, the President of the American Pain Society and the Founder of the Initiative to Improve Palliative Care for African-Americans. Most importantly for us, he is also a recent survivor of prostate cancer.
VS:Dr. Payne, knowing the risks faced by American men today and particularly men of color, did you participate in regular screenings and how was your cancer identified?
RP: Because both my father and uncle died from prostate cancer, and because I am an African-American, I had an increased risk factor so I have participated in regular screenings from the age of 40. Fortunately my cancer was picked up early, but I still experienced the sensations of fear, the potential of death and disability that the word "cancer" conjures up in any man. Even though I'm a cancer doctor and have worked in some of the major cancer care centers in the US, it was still a very frightening moment for me. We know that there are many things that we can do to prevent cancer, but we can never prevent 100% of all cancers; therefore it puts a greater premium on all of us to participate in screening programs to identify the disease early on, giving us the most options for cure and/or control.
VS: Given that you are a medical professional, how did you approach the process of dealing with your cancer? What tools did you employ to make the decision as to what treatment protocol you would choose?
RP: It's one thing to advise someone as a doctor, but something else entirely when you're the one needing advice! Like everyone who faces a diagnosis of prostate cancer, I talked with friends and my professional colleagues; I read everything that I could find on the disease, even going back to my medical school textbooks. I searched the Internet and went to sites like yours to try to discover all of the options for treatment that were available for me. I found that there were many options open to me, which was both a blessing and a curse: a blessing in that there were so many choices for treatment, and a "curse" in that it was difficult to understand what choice to make! As a professional I knew about surgery and the various types of radiation therapy, but trying to decide which one was best for me was a challenge.
The other issue that I, and all men, had to deal with was in recognizing that professional bias is an issue in talking with your doctor: urologic surgeons favor surgery as the way to deal with the disease; radiation oncologists obviously support using their protocols; sometimes a medical oncologist can help to make a balanced decision. Since I am a relatively young man, and my disease was caught at an early stage, and psychologically I wanted to "get it out", I opted for surgery as the way to treat my cancer.
VS: Obviously you had an ideal set of favorable conditions that provided a high degree of comfort - Chief of a department at a Comprehensive Cancer Center, access to the best doctors at that facility - but tell us a bit about your secret fears.
RP: Even in the hands of the best doctors, there can be downsides related to surgery: incontinence that goes beyond the time of surgical healing and impotence, the ability to get or maintain an erection. Because the nerves that control erectile function are near the prostate gland, they can be injured in numerous ways. The nerve-sparing surgical technique, practiced at most of the better medical centers can help to minimize many of the complications related to surgery. So, with the recommendation of my doctor, who is also a good friend, I chose the nerve-sparing surgery.
VS: Many of us need a friend or family member to be with us during consultations with the doctors to be certain that we hear all we should and tell all we're supposed to. Did you utilize any one in that role?
RP: As soon as I recovered from the shock of hearing the diagnosis that I had prostate cancer, I told my wife and she came to play a big role in the entire process. She was with me at all of my appointments and she discussed all of the information and options with me to face the risks together. I also faced a very different reversal of roles with my family; as a cancer doctor, everyone was used to come to me with questions about the disease, but now they didn't feel comfortable in trying to give me advice! However, their support and emotional caring was tremendously important. The one thing that I did do was use this opportunity to reinforce to my brothers, cousins, nephews and male friends the importance of screening and having an awareness of their options.
VS: One of the tenets that you emphasize in your practice and beliefs is the interdisciplinary perspective necessary to insure appropriate care. How would you counsel someone in achieving that standard?
RP: Most men receive the diagnosis of prostate cancer from their urologist. Every man should ask their doctor for referrals to radiation oncologists and medical oncologists that he or she works with so that the patient can make an informed decision as to what option may be best. Ultimately you must have one doctor you can trust! My doctor was incredibly open in recommending that I see other doctors before I decided what I wanted to do. While this may be a rare instance, we, as consumers, must get as much information as possible to choose appropriately. A good doctor always encourages dialogue and is willing to answers whatever questions are necessary for you to feel comfortable with your choice.
VS: Has your experience as a patient altered how you interact/counsel patients or the general public?
RP: Sure, Sure (laughing!) I practice a particular specialty of medicine - palliative care - which emphasizes the need and ability to see the whole person - physically, emotionally, spiritually - and to be sensitive to their concerns and to be able to communicate effectively in medical and psychological terms in order to treat them and not just view them as a disease. However, after my experience as a patient, I became even more sensitive to the fact of their fears and more responsive to their questions. The last thing that you need to have happen is to be rushed in and out of an office!! You want to be in an atmosphere where you have confidence with the doctor and the nurse that your questions will be answered and your confidentiality respected.
So, I'm even more diligent in making sure that the environment is comfortable, that plenty of informational reading material is available and that they know that they can ask questions. Having said that, I also feel that the doctor has an obligation to make a recommendation to the patient on treatment, but it should be based on his understanding and knowing who the patient is and what his desires are for treatment and quality-of-life. I feel that it's wrong just to give the patient a "menu" of choices because it's even more confusing.
VS: Let's put you back on the other side of the desk for a moment, Doctor. The reality is that a high percentage of patients will fail their primary therapy and the cancer will recur. In other cases, the first diagnosis will be at an advanced stage wherein the options are limited. In these situations we counsel that the patients should review their situation with a medical oncologist in addition to the urologist and radiation oncologist. Knowing at some point a significant number of these patients will see their disease progress to more advanced stages, when would you suggest that they begin to seek the services of a palliative care specialist?
RP: That's a very good question! One of the things that we really want to emphasize is that palliative care is not just used in treating advanced stage disease; it really should start at the time of diagnosis and maybe even before. Now, I'll give you an example; I had to have four needle biopsies before my diagnosis was finally made. As you know, and anyone who has ever had a biopsy knows, this is not the most pleasant or comfortable procedure. I am particularly grateful to my surgeon who gave me a local anesthetic each time before he did the procedure so that I would be spared some of the pain. That's palliative care - paying attention to the physical well being of your patient. I can honestly say that there were many times that I almost didn't come in for a prostate exam because the prospect of the pain from the biopsy was more than I wanted to endure; but my doctor's concern for my well-being and palliation ensured that I got the curative therapy needed. My message is that men should demand and expect from their doctors adequate pain and symptom management from the time of diagnosis.
VS: Speaking to the point of biopsies, would you recommend that antibiotics be used as a matter of course?
RP: I would recommend that antibiotics be given 24 hours prior to the biopsy because, as you know, those biopsies are taken through the rectum and there are always germs there so you should have antibiotics in the system to prevent germs from migrating into the blood stream and causing a potentially serious infection. You also need to keep in mind that, even with antibiotics, you can develop a fever within the first 24 - 48 hours and you should contact the doctor immediately so you can get a stronger antibiotic.
VS: While it's not all your specialty, Dr. Payne, it would be of benefit to our viewers to begin to understand how the side effects of advanced stage treatments should be dealt with palliatively.
RP: If it turns out that your diagnosis of prostate cancer indicates that the tumor is advanced, or there is failure after primary therapy, you may require hormonal or chemotherapy or additional radiation therapies; all of these can cause pain or physical discomfort. You should expect that your pain and fatigue that can occur with these treatments will be evaluated and treated --- that's palliative care! So the message is, Palliative Care is part of good medical care, good cancer care and not something that should be viewed as apart or separate.
VS: Obviously we know that pain will be a part of some of the procedures, like surgery, that treat the disease; but self-managed pumps can alleviate most of that discomfort. However, we will note other conditions that could develop such as infection at the point of incision or oozing from the wound that may not be seen right away. How do we deal with these situations?
RP: Again part of our responsibilities as patients is that we have to be aware of our bodies and to know if the area isn't kept clean it can develop infection, or if the site is not healing properly, then we have to pay attention to it.
Pain management is a very important part of the whole process; I have to tell you that I went through surgery without any pain, and that today is the norm. So, the message that I want to get across to all men considering surgery is that it isn't going to be a painful process. With the self-medicating pumps, as you mentioned, and getting the appropriate medications with your surgeon and anesthesiologist, the biopsies were actually more uncomfortable than the surgery!
VS: You mentioned that other side effects from surgery and radiation could be impotence (the ability to gain or maintain an erection) as well as urinary or fecal incontinence. Would you recommend that these situations, should they develop, be best managed by an urologist or a specialist like yourself?
RP: At first, they should be managed by the urologist or the radiation oncologist, who see these conditions as part of their regular practice. However, should the incontinence not respond to the medications or exercises that are typically used, then it's time to go to a specialist: a specialist in palliative care, a specialist in incontinence or a specialist in sexual dysfunction if impotence is an issue. Men need to understand that there have been tremendous breakthroughs in new medications and treatments that these specialists are well able to employ to help the patient.
VS: A significant issue that we're seeing is the incidence rate of prostate cancer among younger men (less than 60 years of age) who, because of earlier diagnoses, are seeing recurrence of the disease or the potential of a secondary cancer as well as conditions relating to the treatment, such as lymphedema. How do you address these concerns?
RP: Well, the recurrence of the disease is a complex issue that relates to a number of factors; sometimes it's a case where it's just not possible for the surgeon to remove all of the cancer, even under the best of surgical techniques. Then, that small nest of cancer that's left behind will grow and require some secondary form of treatment such as radiation or hormonal therapy or chemotherapy or the like. It's also true, and this has some logic, that if your body has generated one cancer, it can also generate a second cancer. What we now know about cancer is that it's usually a combination of genes that we have and environment in which we live, including diet, weight and lifestyle issues such as smoking. Certainly, even after a definitive therapy, it is important to maintain continuous follow-up so that even if there's a recurrence, if it's caught early, it can be effectively treated.
Now, as to lymphedema, this is related to the extent of the tumor that is present and whether or not it is invading the lymph nodes or the veins in the pelvis, or whether any of those structures are compromised during the surgery. The lymphedema, or swelling of the extremities after surgery, results because the usual lymphatic drainage, or venous drainage, is compromised. Again it's a complicated situation dependent on the size of the tumor and/or the location relative to the resection that has to be done. There are rehabilitation approaches such as bandages, wraps, exercises that one can do to minimize the effect of the edema; which is why it's so important to stay involved with your doctors or ask for referrals to rehabilitation teams that are involved in managing these conditions.
VS: In radical prostatectomy surgery the lymph nodes are removed; is there any way of determining pathologically the potential for lymphedema developing?
RP: Not really, not really. It's not so much that the lymph nodes have been removed, but more whether or not the tumor has invaded or compressed the lymphatic vessels, the connections between the nodes. It's a complicated picture in that the pathologic description post-surgery can be predictive, but not always.
VS: In looking at other conditions, such as anemia, nausea, mucositis, weight loss, fatigue, etc. that are more related to radiation therapy, hormonal or chemotherapy. Please give us some background on these conditions and what the patient should do in communicating with their doctor and what they can do to mitigate the effects.
RP: With anemia the signs that you typically see are weakness and fatigue, your energy stores are not as great as they used to be. With chemotherapy particularly the drugs given suppress the ability of the bone marrow to make red blood cells, which is what anemia is. To counteract this condition you must be certain that your nutrition is adequate, that you're receiving sufficient amounts of iron so that what reserves are left in your bone marrow is being nourished adequately to make the red cells, plus there are medications that you can take that boost the bone marrows ability to make red blood cells, such as ProCrit®. There are also basic common sense techniques you can use with instructions from your doctor to minimize the disability. We used to think that you needed to stay in bed, but we've found that only makes you more disabled; what you have to do is engage in gentle exercise, like walking. You don't want to start out doing marathon training, but do enough to get out of bed and keep your muscles from getting stiff and your body loose, plus to keep from developing other complications such as phlebitis.
Like pain, nausea can be a frequent side effect of chemotherapy, but can be treated effectively with medications prescribed by your doctor at the time of chemotherapy introduction. While some people will experience nausea and vomiting, we have learned much more about how to medicate people appropriately to minimize these side effects.
Mucositis refers to the inflammation of the mouth, the lining of the cheeks and the tongue caused by the cytotoxic agents that will kill the cancer cells but also can kill those rapidly growing healthy cells, which can cause pain in the mouth, sore throat and infections in the oral mucosa. Again, you need to use common sense in treating the condition: maintain good oral hygiene with regular dental check-ups; use of mouthwashes with local antiseptics like lidocaine to help with the soreness. In some severe cases of throat pain, people will stop eating, which then complicates their overall nutrition, so we will prescribe a powerful pain medication to aid the eating process. That's the bad news; the good news is that all of these conditions can be treated and will go away once the chemotherapy is stopped.
VS: We have also seen side effects and complications resulting from the use of hormonal therapies either alone or neoadjuvantly with another modality such as radiation. We note things like gynocomastia, etc.?
RP: Those are much more difficult to deal with because they are direct effects of the hormone therapy and if you try to antagonize those effects you can diminish the effects of the hormones in treating the cancer. So what you try to do is to give the minimum dose of these hormones, which are usually estrogen or anti-testosterone hormones; since these are basically female hormones they can promote "female" type reactions such as "hot flashes", enlarged breasts, etc. Again, if the hormonal therapy is successful and can be stopped, then those conditions will recede.
VS: Let's talk a bit more about advanced stage disease, when metastasis occurs either to soft tissue or to bone. What are some of the issues to be dealt with?
RP: One thing that we know about prostate cancer is that it likes bone, and by far the most common metastasis is to the bone; and there, the most typical symptoms are pain and, if the bone is weakened enough from the cancer, it can actually fracture thereby causing even more pain. Now the reason we have bone is to protect our skeleton and our spinal cord; but, if the prostate cancer goes into the spine and grows through the spine, it can cause paralysis also causing pain and weakness. In this day and age we should be able to prevent most of the paralysis that occurs with prostate cancer because we're taught now that patients who have prostate cancer and pain in their back or neck need to get immediate evaluation with a neurological examination and a MRI scan. The MRI is a particularly good tool because we can see the tumor's progression and evaluate whether or not it has begun to invade the spine; and if that's the case, we can begin to treat it with radiation, steroids and, if necessary, with surgery.
The soft tissue metastases are much less common, but can occur. They typically occur in the pelvic area because cells escaped from the prostate and began growing in the surrounding tissue. It can cause pain or swelling in the legs, swelling in the scrotum and sometimes can metastasize to the liver causing pain and swelling in the abdomen.
VS: We've seen a lot of press recently about the potential for "addiction" to pain medications. Conversely, it has also been well documented that in many cases patients aren't receiving an appropriate dosage level of pain medication to keep them comfortable. How do you address this dichotomy given that many patients believe that they're supposed to be in pain because they have cancer and, as recently reported by AARP's magazine that only 7% of medical schools offer courses in pain management?
RP: I know as much about this as anything I know in medicine because it's the area that I've specialized in. Let me first say that in working in cancer centers for the past 20 years, we've had the experience of treating literally thousands of cancer patients with strong pain medications when they've needed them and we can say without question, if you have pain and if your pain is being treated with the appropriate amount of medication under a doctor's care and if you have never had a history or problem with abuse of substance, then the chance that you will become an addict is less than ½of 1%. This is something that we can say with a great deal of assurance! In fact, people, as you suggested, are so afraid of becoming addicted that they often don't take enough pain medication to control their pain adequately.
Patients and families do have an exaggerated fear of addiction and feel that doctors won't be able to control the side effects. Those side effects of strong pain medications, like morphine, are constipation and what I call, "mental clouding" and sedation, a sense that you can't get your thoughts together and feel "foggy". Constipation occurs in everybody and what you do is make certain that you prescribe a laxative when you prescribe the pain medication. The mental clouding and sedation is a bit more difficult to deal with, but there are a couple of points to make: one is that the condition doesn't occur in the majority of patients; most patients taking pain medication will remain clear-headed enough to perform all regular functions, including driving. The other point is that when it does occur we can switch the patient to another medication - morphine, OxyContin®, methadone, dilaudin, etc. - and match the drug that is most appropriate to the patient. In a few cases the mental clouding will remain despite a switch in medications; in those instances we may add another agent which can be as simple as caffeine or another prescription medication, such as Ritalin or a newer medicine called ProVigil®, which is approved by the FDA to treat narcolepsy. The key thing is that if your regular doctor is not controlling your pain, you should ask for an immediate referral to a specialist in pain control.
VS: Is this "mental clouding" the same condition as "chemo-brain"?
RP: No, mental clouding has more to do with the way the pain medications bind to certain proteins in the brain while chemotherapy has a different mechanisms. They are the same in that should you know that if you are experiencing these symptoms, you should go to your doctor and get treatment to alleviate these conditions. What we're trying to do is to treat you for your cancer so that you can go on with your life despite the fact that you have cancer and are being treated for the cancer; the whole idea is to function at the highest possible level with the highest possible quality-of-life.
VS: All of this has the assumption that the doctor has the skills necessary to deal with the conditions and the willingness to communicate with the patient!
RP: ...and you as the patient have to be comfortable enough to tell your doctor about what's going on and have the expectation that the doctor will do something about it! (laughing!!)
VS: The issue of discrimination is very important to you in your professional life; to the point that you were instrumental in founding the Initiative to Improve Palliative Care for African-Americans. What motivated you to take up this cause?
RP: By palliative care we mean care that approaches patients as a whole person and not just a disease and which incorporates the medical treatment with their spiritual and psychological well-being. While palliative care should start at the time of diagnosis and continue through the course of treatment, it is particularly important for those patients faced with advanced stage and potentially terminal disease wherein attention to pain and other quality-of-life issues is paramount. As with other areas of medicine, we know that there are disparities and inequities in care for African-Americans and other people of color as it relates to palliative care. Our communities typically don't have access to specialists who practice this type of care and for our communities of color who have historically, and even still today, been denied access to care there is the belief that "palliative care" is another way of saying that they are not being given curative therapy. This is a major misconception because palliative care is something that is not done instead of, but is a complement to, effective curative treatment for your disease. I have seen too many instances where discussions on pain management, living wills or advance directives are interpreted as "The doctor is giving up on me."
We felt that we needed an organization, within our communities of color that said that these issues are as important to us as to any other segment of society. So we created the Initiative to Improve Palliative Care for African-Americans and other people of color to deliver the message that palliative care is a part of quality medical care and that we deserve the highest possible standard of care as anyone else, and as we deny ourselves access to palliation, we are denying ourselves the highest standard of medical care.
We've taken the message to major medical and service organizations around the country to promote the importance of understanding the concept.
VS: This brings up a similar problem, the unwillingness and/or fear of minority patients to participate in clinical trials. How do you help them through this process?
RP: I have often been frustrated in many of the clinical trials that have been done at my institution by the lack of minority participation. We still face the vestiges of the "Tuskegee" experience and the reality that our medical system in many cases has breached the trust of minority patients. However, as African-Americans, we have to get past this and become active participants in the clinical trial process. In reality clinical trials are as old as the Bible; in the Book of Daniel it's told how the Israelites were being forced to change their diets by King Nebuchanezzer when Daniel suggested that his people would retain their dietary customs and the King's people theirs and then a comparison could be made. This is what clinical trials are all about; whether or not one type of drug or therapy works better than another. And, given that medications can work differently dependent on metabolisms, genetic conditions, etc., if African-Americans do not participate fully in clinical trials, we can't be certain that the medications are best indicated in treating their disease effectively.
Most reputable medical institutions have formed committees - ethics, human subjects, institutional review boards - to insure that the egregious conditions of the past will not occur again. Plus, these committees are composed not only of just doctors and hospital staff; they now have representatives of the community to insure that the clinical trials are being done in an ethical and safe way. It is no longer the case where doctors can just start doing things to people without some oversight from the institution; this has been mandated now from the Federal Government.
VS: Is it safe to say that, despite the fact that the trial will be testing a new drug or procedure, the participant will be getting the minimum "standard of care" available?
RP: Not only will you get a minimum level of care, but because you will be under frequent observation with regular check-ups, you will normally receive the BEST standard of care.
VS: Are there any points you want to leave us with?
RP: There is a "quiet revolution" occurring in medicine taking patient treatment back to its roots of encouraging increased patient/doctor communication and involvement as well as greater recognition for the patient as a whole being. We can perform miracles in medicine - transplanting organs, replacing body parts, curing diseases that used to have 100% mortality rates. On the other hand, we also know that no matter how good our medical care is, we're all going to die and many of us as a result of a chronic illness. We have to talk about death and dying, but also talk about advancing medical care; it's not an either/or situation, it's both.
VS: If any of our viewers need more information on the IIPCA or want to contact you as patients, please provide the appropriate details.
RP: If they want more information on IIPCA, they can go to our Web site at: www.iipca.org; if they want to have a consultation with me as a patient, they can make an appointment at: 919.660.3553.
VS: Thank you, Dr. Payne, for sharing your own experiences and providing some necessary guidance for insuring a desired quality-of-life.