Archives for May 2013

Cancer patients and their families are incredibly studious. Hardly a day goes by without a patient showing me an article from the newspaper about a new treatment or development, or a new idea about alternative therapies. Some people take notes during appointments or record the encounter. Some get printouts of their labs and organize them in three-ring binders. A few of my patients even organize their lab data in Excel spreadsheets.

I see people spending hours every week poring over newspapers, web sites, and their own medical records. For some, the process is helpful. For others, it becomes a frustrating compulsion. Despite an abundance of information, many patients (and their families) consistently feel under-informed. Big questions get asked again and again, but don’t always stay answered.

Understanding one’s cancer is an important part of coping. But how to do this isn’t always obvious. While knowledge is a form of power, drowning in information is powerlessness.

Are you processing information productively? Here are a few signs you might be overloaded:

• You have a stack of reading material that keeps getting bigger. After any diagnosis, there’s always a lot of information to process. But if you’re getting further and further behind, you might need to reconsider how things get added to that reading stack.
• You don’t understand much of what you’re reading. It was true in school, and it’s still true: plowing through page after page without understanding is a waste of time.
• You want to “understand everything about your cancer”. It’s hard to get answers when you haven’t articulated the questions. The amount of cancer information available is so huge that no person could hope to read all of it in a lifetime of study. Much of it is minute detail that’s unlikely to be useful to you. A patient with lung cancer, for instance, might wonder what “TTF-1 positive” on his pathology report means, but probably isn’t helped by learning that TTF-1 is a molecule expressed by some cancer cells originating from surfactant-producing epithelium-and apart from helping confirm the diagnosis, it isn’t that important to his doctor either.
• You’re terrified of overlooking something important. New treatments are constantly being tested: first in the lab, then in humans in three different phases of testing. It might seem tempting to read every journal article about every one of these trials. But remember: science always fails many times before it succeeds.Only a minority of treatments in development will prove effective. The ones that do will send shockwaves through the medical community, and are very unusual for you (or your doctor) to overlook.
• You can’t decide what’s reliable. It can take a while to get through the Cancer.gov webpage. Add in a few celebrity cancer books, nutraceutical brochures, and advertisements from agencies that promise miracles (but disclaim “results may not be typical”) and the reading list can get very long, very quickly.
• You’re hoping to predict the future. Statistics can often give reasonably good probabilities, but can’t tell us what will eventually happen. For instance, a breast cancer patient may know that her chances of cure are 80%, but only time will tell if she’s in the 80% group or the 20% group.

Start your search for information with the following questions, and you might be able to avoid information overload:

• Do I trust my doctor? A doctor/patient relationship that doesn’t quickly cement into trust is a problem. Most doctors are caring and qualified, but some of us don’t show it very well. It’s OK to talk your doctor about trust issues (in fact, it’s important you do so). And if you have nagging doubts, it might be best to consider changing providers. Is your diagnosis particularly scary? Starting with a second opinion up front is usually a good idea.
• What is the specific question I need answered?You can’t “learn everything about your cancer”, or usefully track all of your lab results. You CAN find out things like your stage, your chances of cure, and which lab tests your medical team will be tracking (and what they mean).
• Can my medical team help answer my questions? You are not in this alone. Your medical team wants to help you with information, and they can save you time and frustration. Let them help you.
• Is my question answerable? Sometimes the answer is “There’s no way to be sure”. And though no one likes such answers (especially doctors), call uncertainty what it is. Don’t frustrate yourself searching for clues that don’t exist.

Fatigue is a very common complaint among cancer patients. Everyone experiences fatigue from time to time. This is how our bodies indicate the need for rest and sleep and is an expected feeling after certain activities or at day’s end. Usually a good night’s sleep will solve the problem. However, individuals with cancer can experience fatigue on a daily basis. This type of fatigue is a whole-body tiredness not relieved by sleep. Cancer-related fatigue can have an impact on an individual’s ability to function on a daily basis.

There are many causes of cancer-related fatigue including:

• Treatment of cancer (chemotherapy, radiation)
• Low hemoglobin (red blood cell) levels caused by treatment
• Decreased nutrition, due to treatment side effects or to the cancer itself
• Unrelieved pain
• Increased stress
• Inability to sleep at night

To treat cancer-related fatigue, the underlying cause must be treated. In addition, conserving energy, maintaining a balanced diet, exercising as tolerated, and stress management can help lessen fatigue. If you are experiencing cancer-related fatigue, speak with your nurse, nurse practitioner or doctor to prepare the best plan for you.

Being diagnosed with cancer is a life-altering event. To survive through the process, one usually relies upon others for help. This article is written for those individuals who are the “helpers” or the caregivers. The people who help can be a spouse, sibling, parent, child, neighbor or friend; a person who will be there for the cancer patient to lean on. It is very important not to overdo it when you are the caregiver as it can lead to burnout.

What are the common signs of burnout?

1. Changes in emotion – feeling angry or upset, feeling overwhelmed, crying easily. Although all these emotions may be appropriate at certain times, having extreme amounts of these feelings which are interfering with the ability to make decisions or to help may be a sign of burnout.
2. Changes in sleep pattern – sleeping too often, too little or experiencing interrupted sleep can often be a signal of developing burnout.
3. Changes in appetite – eating too much or too little, eating lots of “junk” food. Eating poorly can lead to changes in weight and poor energy.
4. Withdrawing from friends, family and social events – caregivers experiencing burnout may withdraw from others because they feel tired, guilty, or anxious about not being available all the time.
5. Exhaustion – feeling extreme fatigue, inability to accomplish the basic activities of daily living; washing, bathing, dressing, brushing your teeth; is a danger signal of an approaching burnout crisis.

How can you prevent burnout? There are several ways to avoid cancer caregiver burnout, allowing you to continue offering help and support to your loved one during their cancer journey:

1. Take care of yourself – you cannot give of yourself unless you make sure that you have what you need to survive. You need to keep up with your daily activities; exercising, keeping up with your own doctor appointments.
2. Take breaks – you will need time off, time to relax, time to rejuvenate. Regularly schedule trusted friends, family or home health aides to relieve you of caregiving duties for a period of time each day, when possible. Many caregivers feel guilty about leaving the bedside, but this is also good for the patient. Seeing a new face and knowing the primary caregiver is getting relief can uplift morale and the patient may feel like less of a burden if the caregiving is shared.
3. Delegate tasks to family and friends – you will be surprised at how many family members and friends will pitch in if you ask. Things like cooking meals, running errands, and cleaning the house can be delegated to family and friends. Having others pitch in and lighten your load can help keep you balanced and give you more time and opportunity to provide care for your loved one.
4. Educate yourself about the disease – the more you know, the better you’ll know what to expect and be able to be prepare for what the future offers. Ask the doctors and nurses about your loved one’s condition and what you as a caregiver need to know. There are many helpful websites such as the American Cancer Society site (www.cancer.org) and our own website. There are no silly questions that you should be worried about asking. If you are unsure about anything, please ask.
5. Get organized – many caregivers also are responsible for managing medical records, insurance claims, and finances, not to mention medication and eating schedules. The key to success here is organization. Keep medical records neat and accessible by storing them in a large file, organized by date. Medicine schedules can be created on a spreadsheet, and then printed out daily or weekly. As each dose is given, it can then be checked off. The same can be done with eating schedules. Ask your provider for other suggestions, if desired.

Being a caregiver can be very rewarding. By watching out for burnout, you can continue to provide the care and love needed throughout the cancer journey. If you do feel so burned out that you may harm yourself or another, call 911 or go to the closest emergency room. You can also call the Crisis Center at (920)436-8888. Please remember that life is a journey, not a destination. We are here to help you and your loved one through this life experience.

There are 2 types of esophageal carcinoma: squamous cell carcinoma and adenocarcinoma. Adenocarcinoma typically develops in the lower part of the esophagus. Since 1975, it has increased fivefold in the United States. As far as risk factors for this increased incidence are concerned, chronic acid reflux is at the top of the list.

Chronic acid reflux is a condition where stomach acid flows back into the esophagus over a period of years. Over time, the cells which line the esophagus can start to resemble cells of the stomach lining. This condition is called Barrett’s esophagus. In some patients with Barrett’s esophagus, there are further tissue changes, showing increased cell proliferation and in some cases progression to adenocarcinoma of the esophagus.

There is some recent data showing that when patients with Barrett’s esophagus take stomach acid reducers called proton pump inhibitors, there is less risk of progression to adenocarcinoma.

In addition, some evidence shows that low dose aspirin taken by patients with Barrett’s esophagus over many years may reduce the risk of adenocarcinoma by as much as 20 percent.

Obesity and diet appear to be important risk factors in the development of esophageal cancer. In one large study looking at data from 218854 AARP members, it was noted that a body mass index of 35 kg/m2 or greater was linked to an increased risk of adenocarcinoma of the esophagus and upper part of the stomach.

A diet low in vegetables and fruit consumption also appears to result in a higher rate of esophageal cancer.

There has been concern that oral biphosphonates which are commonly taken by women to reduce the risk of thinning of the bone are a risk factor for adenocarcinoma of the esophagus. However in a recent British study looking at 42,000 patients, this did not seem to be the case. For patients on biphosphonates, it is still important that they remain in an upright position for at least 30 minutes after taking their biphosphonate pill in order to avoid chronic irritiation of the esophagus.

So, what would be practical advice for esophageal cancer prevention?

Speaking for myself, I definitely will watch my diet and weight more, have fruits on the kitchen table instead of cookies and hope to have more guidance regarding the use of aspirin once more information from a large prospective British Chemoprevention trial looking at aspirin and esophageal cancer is available.

I already had a screening scope exam of my esophagus and stomach and plan to recommend it to my patients, particularly if there are symptoms of reflux.