Cancer. It’s a subject most of us avoid until we can’t. The dreaded C-word diagnosis happens to others, so why think about it? I know I’ve avoided the subject. That is until I met Dr. Mark Fesen, patient advocate, highly-regarded oncologist and author of Surviving the Cancer System.
Dr. Fesen is as tall as an NBA player and more approachable than my favorite Starbucks barista. I wouldn’t have guessed he was a doctor when we first met. Most notable was his compassion for people and passion to share his knowledge and advice. And not just any advice, but open and direct information on how cancer treatment is affected by asking the right questions, your relationship with the oncologist, how insurance affects treatment options and what to do if you have none, and, this is really important, your attitude. Also, understand that cancer is both a disease and a business.
I was so jaw-dropped stunned by some of the revelations, I chased him down for an interview.
Q. What inspired you to write Surviving the Cancer System?
A. Confusion, misunderstanding and panic by a great number of patients inspired me to write the book. Patients and families expend enormous sums of money, energy and hope on useless therapies. Newer more effective and tolerable treatments often go unused out of fear of side effects or cost. I feel that it is my obligation to at least try to explain the patient’s situation, to the best of my abilities. I try to do this with my own patients and wanted to reach out to others across the country.
Q. A recent news story said the decrease in cancer death rates, now the lowest since the 70s, has more to do with prevention and early detection, rather than treatment. What are the best ways to help prevent cancer?
A. The process to develop cancer may take several decades. It isn’t always possible to tell what has caused each patient’s cancer. Despite following all of the recommendations patients still develop cancer for unknown reasons. And not all cancer can be prevented. As treatment for heart disease and other diseases improves, more cancers will develop simple because we are all aging. Still the best known ways to prevent cancer are:
Don’t use tobacco — ever, any type, or even occasionally. The most preventable cause of cancer is tobacco. No type of tobacco is safe: pipes, chewing, and smoking only a few cigarettes a day are all associated with a higher risk of developing cancer. The addiction to nicotine can be very strong. Quitting may take a major effort and require repeated visits to the doctor but it is worth it. Often patients need both a medication to reduce craving and a second nicotine replacement. Patients who quit smoking now will have a much greater risk of developing cancer for many years and need to be monitored very closely.
Control your diet. High fat diets and being overweight may be associated with a variety of cancers in addition to heart disease, vascular disease and diabetes.
Limit alcohol intake. Several types of cancer, such as head and neck cancer and esophageal cancer can be associated with alcoholism.
Limit unneeded radiation exposure. Life is a pre-malignant condition. Just by being alive and aging we risk developing the DNA damage that can lead to cancer. Radiation exposure of any type can increase this risk. Common sources of radiation are medical uses, radon, cancer treatment and cosmic radiation. Cosmic radiation exposure occurs at high altitude such as in airplanes.
Have your Vitamin D levels checked. It may take years to prove, but Vitamin D, may play an important role in preventing cancer. It is worth asking your physician about your level of Vitamin D. Doses of 1000 to 4000 units a day are commonly used. Many cancer patients are deficient in Vitamin D.
A. Educating children about cancer prevention and healthy living is a great plan. Children need to be aware that exposures that occur when they are young and invincible might cause cancer later in life. Also, children need to understand that they need a good relationship with a primary care physician. Patients who haven’t been to the physician for years place themselves at a serious disadvantage. Don’t wait until the mass on your thigh, breast or throat is massive to notify your doctor.
Q. Do screening tests look for all types of cancer?
A. No, screening tests do not check for all types of cancer, only for certain ones. These tests don’t even check for the cancers that people are most likely to die from. Cervical cancer, colon cancer and breast cancer are examples of cancers where tests find the cancer early enough to help more people survive. Lung cancer, pancreatic cancer, kidney cancer and brain tumors are examples of types of cancer that are routinely found at an advanced stage because no screening test is available. Patients also expect that there are blood tests that can check for most types of cancer. This is NOT the case. It is unusual to be able to find cancer early by blood test. Prostate cancer is perhaps the only common cancer where a blood test is used.
Testing isn’t recommended if the cancer can’t be found early enough to help more people survive. So, for example, even though lung cancer is the type of cancer that has the most number of cancer deaths, no screening tests are available. Routine physician visits and physical exams are also important. Oftentimes patients overlook important symptoms. I have seen many patients who thought they had rectal bleeding from harmless hemorrhoids, when in reality they were bleeding from a rectal cancer.
Q. At what age do routine screenings start?
A. Routine screening for cervical cancers start at age 18, or earlier if a woman has been sexually active. Routine physician breast exams should occur with each annual visit. Colonoscopy is recommended to begin at age 50 if there is no history of cancer in the family. Patients should get a colonoscopy when they reach an age ten years younger than when a parent or sibling developed cancer. Skin cancer screening should be done at each annual physician visit. The age at which mammograms are recommended has been a matter of some debate recently, but should be discussed with your physician beginning at age 35. Even though the PSA test is commonly used as a screening test for prostate cancer, its use has not been proven to help and it is not officially recommended.
Q. If someone, or their child, is diagnosed with cancer, what are the top three things they should keep in mind when navigating the health care system?
A. Cancer treatment is a very complicated big business world. It helps to have a trusted adviser helping you through the system. A good relationship with your local oncologist is essential to helping you navigate this system. Most complications from cancer treatment will occur while you are home. Having an oncologist close to home who knows your situation is essential. Secondly, chemotherapy, radiation treatments as well as surgical techniques have advanced far in the last several years. You treatment will likely be far more tolerable and far more effective than you expect. Many patients arrive with memories of what happened when a relative was treated ten or twenty years ago. Yes, it has gotten much better. And third, there are many resources available to help patients who have trouble affording their treatment. My book, Surviving the Cancer System, lists a large number of these very worthwhile organizations, but it is only a start. Many others are out there.
Q. Will the recently passed federal Health Care Reform affect how you’re able to care for patients?
A. Yes, the recently passed reform will affect your cancer treatment. The good news is that many patients who are currently uninsured will eventually have health care, but several major issues weren’t addressed. The two most important of these are tort reform and the amount of money physicians are paid by Medicare for their services. Fear of malpractice suits greatly affects the relationship between physician and patient. When these fears are allayed, patients get a more honest opinion. My book, Surviving the Cancer System, explains ways to reduce these fears. The new health care bill doesn’t reduce these fears. Medicare patients are also put at a disadvantage when the amount of money physicians are paid to see them is hard to predict and is cut yearly. When the payment that physicians receive from Medicare is so unreliable, patients must work even harder to solidify the relationship between them.
Q. How can family and friends be supportive during cancer treatment and after?
A. There are many ways that family and friends can support the cancer patient. The most important is to ask what direct care is needed. Driving, walking, companionship, getting medications, food and the like seem simple but become very complex when you are ill. Ask what would help the most. Sometimes patients avoid treatment because of prior commitments they have made. “I can’t be treated that day because I said I would …” is a common reason given for delaying or avoiding treatments. Offer to help. Other ways to help is to quit smoking yourself. It can be very challenging to the patient to try to quit if all of their friends and family are smoking. Finally many patients need help sorting out medical and hospital bills. This is a hard chore on a good day, but one that needs to be done and is easily put off when you are ill. If it is left undone, the complications can be great.
Q. What has the response to your book, by patients and others in health care, been like?
A. The response has been rewarding. Many say that they wish that they had this book when they were diagnosed. Others found the book so useful that they bought extra copies for the cancer center. One couple carefully review the hospice chapter as her condition worsened. While they eventually found the local hospice chapter very helpful, they learned that at that time it wasn’t for her. Many patients find the book reassuring and hopeful. They find that it reassures them that yes, there can be hope, compassion, and a plan-that they can afford.
Mark Fesen, MD, FACP (Hutchinson, KS), an oncologist, has dedicated 28 years of education and 14 years of clinical practice to better care for his patients and their diseases—from lymphomas and breast cancer to lung cancer, prostate cancer and colon cancer.