April 2008 Archives

The Journal of Hematology and Oncology Issues give out annual Hope awards; these awards recognize oncology practices around the country in different areas.  These areas include leadership, management skills and what I believe is the most important, patient care.  Our practice was awarded the Hope award this year for patient care in the large practice category.  In the latest issue of this journal a nice article about our practice explained our efforts in trying to improve patient care.  I’m very proud to be associated with a practice that puts as much effort as we do in trying to improve the way we care for patients.  I hope our practice continues to strive to take care of all our patients the best way possible.

Today was a beautiful spring day, the sun was shining, it was warm and it was one of the first opportunities to get out and work in the yard.  It was fun being out in the spring with my family.  But like most good things, too much sun can be harmful.  Today there are more skin cancers than any other cancers combined in the United States, with almost 60,000 diagnosis of invasive melanoma last year alone.  It is expected that one out of every 63 Americans will develop melanoma in their lifetime.  Melanoma rates are increasing faster than any other cancer in men and are increasing as the second most common cancer in women, particularly young women.  The good news is that survival rates for melanoma are improving; the bad news is that because of the increasing number of cases every year the absolute number of deaths from melanoma continues to rise.

There are ways in which to reduce your risk of melanoma, the National Melanoma/Skin Cancer Screening program was effective at identifying more than 20,000 patients with melanoma.  This screening program uses a whole body skin examination by the individual patient, another non-medical person or a physician.  Studies have reinforced that the total body skin examination is important because melanoma can occur anywhere on the skin, especially for patients at high risk for melanoma.  Some of these risk factors are light skin/fair complexion, multiple pigmented nevi, family history or previous melanoma. 

It always amazed me that such a small little tumor can be so deadly. I encourage everyone and all of my patients to get yearly skin exams. Everyone should be ever vigilant about looking for changes in a particular mole.  Changes in size, color or the configuration of the mole are all signs that a mole may be potentially a problem.  Getting a skin exam is one the easiest and likely most effective cancer screening tools that we have today. Sun avoidance and being smart about when a person is exposed to the sun are other import ways to reduce a persons risk of developing melanoma.    

Why is it so important that patients develop an open relationship built on trust with their medical oncologist, or for that matter, any physician?  It may seem perfectly apparent that the better the communication between doctor and patients, the better the overall care of patients will receive, but there are specific types of conversations and specific uncertain aspects of oncology care that make this communication even more important. 

Communicating with a patient about their initial diagnosis is one of the most challenging aspects of my job.  Many times a patient has had only a few days to maybe a week to emotionally digest and intellectually comprehend the fact that they have been diagnosed with cancer.  The diagnosis of cancer, the treatment of cancer and the subsequent living with cancer or being a survivor of cancer is a very complex. It is a life changing period of time in patients’ life.  Going through a procedure to obtain a tissue diagnosis and then going through staging studies such as CAT scans, PET scans, or bone marrow biopsies, etc. are usually frightening and associated with a great deal of anxiety for patients.  So much of what a patient’s ultimate prognosis will be depends on what we find out on these multiple tests.  The conversations that I have with patients during these early contacts really lay the foundation of a relationship that hopefully will last many years.  As a physician, we must quickly obtain a patient’s trust; and then must explain a great deal of sometimes very foreign information.  This makes these early conversations some of the most challenging that we as oncologists face.

But the challenging conversations don’t end there. Once a diagnosis is made discussions with patients change to treatment, treatment related side-effects, long term side-effects of chemotherapy, radiation therapy or other treatments. Patients must understand what may or may not happen with them as they receive various therapies.  An informed patient as they go through therapy is a much safer patient. An educated patient will recognize a serious side-effect, whereas a more uneducated patient may miss something that could lead to significant complications or even death. 

Discussions at this time also may have to encompass discussions in terms of fertility. In many young patients chemotherapy may render their ability to have children impossible. These discussions can be difficult when you’re talking to a 20 to 30 year old woman who she is being diagnosed with breast cancer and is yet to have a family. The fact that she may never have children or have a much reduced chance of having children may be as difficult for the patient to deal with as the actual diagnosis of cancer.

When cancer reoccurrence is found, or a cancer progresses or when chemotherapy is no longer working are again difficult discussions. These are situations in which a great deal of education and time is required talking with these patients to inform them about “this bad news”.  Many times this means additional chemotherapy and sometimes the final realization that a particular cancer is terminal. 

Even when a patient finished chemotherapy and goes on to be a cancer survivor, the difficult discussions don’t necessarily end, chemotherapy and the stress of cancer can impact families and some times cause patients to have clinical depression.  Unfortunately, there is still a lot of misinformation and a lot of feeling that depression is something that only weak people develop.  Other survivorship issues, such as, sexual dysfunction, changes in bodily functions, changes in appearance, changes in skin texture, vaginal dryness, and memory changes are all changes that many cancer patients face. As they go through the process of being diagnosed with cancer, being treated for their cancer and then hopefully, ultimately becoming a survivor patients have to face many difficult discussions.  Because of the complex nature and sometimes difficulty of these discussions, it is incredibly important that patients develop a sense of trust, a sense of openness, and a sense that no question is too silly to be answered.  We, as oncologists, also have to do our part in many times bringing up these difficult subjects and coaxing patients along and making them feel comfortable discussing these difficult issues.  Hard questions like “Since my cancer is back, will I die a painful death?”, or “How long do I have to live?” may be on a patient’s minds, but sometimes patients are hesitant to ask because of fear of what they will hear, or the sense that if they bring these difficult subjects up that somehow is the same as giving up.

Several years ago I had a patient who had been diagnosed with terminal breast cancer, she was a lady in her late 60’s and we had the opportunity to spend many of our visits talking about her eventual death.  She was able to gain enough trust in me to discuss what was important to her. She did not want to die at home, she wanted to be able to have as much independence as possible and to be able to be in control of her bodily functions as long as possible.  This allowed me to treat her in a way to try to maximize her wishes and provide comfort in the areas that meant most to her.  Over the many months that I treated her, our discussions turned away from the discussions of life and death and her treatment to her family, and my family.  No matter how badly she sometimes felt from her chemotherapy or her disease, she always asked how I was doing. She really cared if I was having a bad day.  When she finally passed away I truly missed her visits to my office and cried for the loss of not only a patient, but someone who had become a friend.  These are the kind of relationships that I strive to have with all of my patients, and ultimately these are the kinds of relationships that make oncology so rewarding to me.

Over the thirteen years of my practice I have been “fired” by patients.  It is a great point of pride that these occurrences have been far and few between, but when they have occurred they are situations that are difficult for me to forget.  The common theme of these instances when patients have left my practice for another physician has been generally a lack of communication.  One instance that occurred, very early in my career, involved a young patient with chronic lymphocytic leukemia, she presented with a very elevated white blood cell count and the diagnosis was quickly made.  I followed her for many months, each time our visits were spent talking about how chronic lymphocytic leukemia was sometimes a disorder that required no treatment. I spent a great deal of time explaining why even though she had cancer and even though she was young, my recommendation at this point was not to treat her.  Over the many months that I followed her, her disease slowly progressed and eventually reached the point where I felt treatment was necessary. I recommended treatment to her and was surprised at her reaction.  She immediately sought a second opinion and left my practice.  In analyzing this situation I learned a valuable lesson, I had spent months talking with her trying to build a relationship but when the time came to make the decision for or against treatment, I failed to spend the time communicating to her the reasons why at some point she would need treatment.  The fact that I was recommending treatment when I did came to her as a shock and I, in fact, did a poor job at preparing her and explaining the reasons why she needed treatment. 

Many years later, I was at a survivorship conference and was surprised when the same patient came to speak about communicating with physicians. I sat there listening to her story on how her first oncologist (me) seemed to treat her only as a number and how her present oncologist had spent the time to get to know her, and understand her feelings.  I was very gratified that she was doing well. I also was embarrassed that her words again reinforced how poor a job I did with her. As a physician we must work to develop a relationship with our patients and that despite time restraints and a busy schedule; we must be able to spend the time to listen to our patients and develop their trust.

A recent article from the journal published by the American Association for Cancer Research by Kevin Begoss, talks about relationship building and what it takes to create a strong patient-doctor partnership.  I think it’s a wonderful article and in that article it gives some fine points of developing a good doctor patient relationship.  It states, “Every doctor-patient relationship is unique so there are no absolute rules for how to establish good communication.” Nevertheless, based on patient and doctor feedback for this article, several important themes were identified;

 For patients: 

1) Think and talk about communication needs from the very beginning of your relationship with the doctor.

2) Find extra support in the early stages after diagnosis, have someone accompany you to your appointments or develop a support network in addition to your doctor.

3) Educate yourself and take notes to your doctor’s visits, write more notes during that appointment.

 4) Get a second or third opinion if you wish and develop a trusting relationship with the doctor that you choose.

5)  If you’re not comfortable with your doctor, consider switching to a new one. 

For doctors

1) Remember that your patient’s need emotional as well as medical support.

2) Learn some details of the patient’s personal life.

 3) Accept the possibility of both good and bad information coming from the internet.

4) Patients who don’t ask questions may need some coaxing.

5) Beware of racial and economic disparities that may affect communication.

I believe these are very good points for both patients and doctors to use to develop what is needed in their relationship. 

I admire my cancer patients. Surviving cancer is a life changing event. As a child I used to admire sports figures, astronauts and John Wayne. Today it is my patients that I think of first when asked “who do you admire most?”

An important aspect of today’s treatment of cancer is survivorship; the numbers of patients within the next ten years who will become cancer survivors is astounding.  The National Institute of Heath estimates that in the next ten to twenty years there may be as many as 20 million people that have battled & survived cancer.   This is an area that the oncology community is just now awakening to.  We are beginning to develop programs and ways in which to care for these survivors.  As a cancer survivor there are issues, both medical and emotionally, that affect a patient’s life.  I think it is important that we as a medical community address these.  It is common nowadays to find whole issues of medical journals, and advocacy magazines devoted to survivorship. Foundations such as the Livestrong foundation and the Susan Kohmen Foundation and the other wonderful foundations around the world are aggressively addressing the needs and supporting cancer survivors.  Another organization that I have great admiration for is Turning Point; this is a Kansas City based company that their whole goal is to improve the lives of cancer survivors.

 In my own practice, when a patient is first diagnosed, we have patients go through a “chemotherapy teaching” class that is instructed by one of our nurse practitioners. We now also have a similar class for patients at the end of their treatment. This class gives them all the various resources that are available to them in turns of survivorship.  I strongly encourage patients that have completed their treatment to find support in as many different areas as they can.  Support can be obtained through the nurses and doctors of an oncology practice, through national organizations such as the Lance Armstrong Livestrong Foundation, and local companies like Turning Point. The American Cancer o Society also has a great number of support groups and survivorship programs.  Listed at the end of this article are some websites of various organizations that have information for survivors.

www.livestrong.com

www.turningpointkc.org

www.komen.org

www.canceradvocacy.org

There is a saying that you want to keep your friends close and your enemies even closer, I think that saying describes my life. It seems that cancer is always so close at hand.  I recently found out that a childhood friend of mine that I had lost contact with had battled breast cancer, I was glad to hear that she was a three year survivor. It made me start thinking about all the people in my life that have been touched or have lost a battle to cancer.  In my family, I have lost an uncle to cholangiocarcinoma, on my mother’s side I have lost an aunt to colon cancer, and I lost another aunt to skin cancer. My maternal grandmother and grandfather both died of pancreatic cancer. I have a cousin right now that is being evaluated for a mass in her pancreas that may or may not turn out to be cancer. Even the wonderful lady that has cleaned our house for the last few years was recently diagnosed with advanced cervical cancer. A young girl at our karate school died of leukemia last year. It seems like there’s not a week or two that goes by that a friend of the family or friend of a friend is diagnosed & seeks out my help with their new diagnosis. This is how I originally met Jennifer Ireland. I always welcome these phone call when they come. I hope the advice and council I give helps these people fight this enemy that is so close at hand.     

I recieved a wonderful book today. Lilly Oncology On Canvas is a collection of art works about cancer done by people from all over the world. It is just wonderful!!!!! You can see the art work at www.lillyoncologyoncanvas.com

4/3/08

4/1/08