October 2008 Archives

I had the pleasure of seeing two very special women today. I can’t even begin to tell you how much cancer has affected their lives. They have been through years of treatment for two different cancers. They each have had liver resections, multiple biopsies and more CT/PET scans then you could count. Both have endured multiple courses of chemotherapy; gemzar, taxotere,cytoxan adriamycin, Doxil and on  and on. One developed treatment related acute leukemia and survived a bone marrow transplant only to have to continue to fight her first cancer. The other developed a relapse while pregnant with her daughter (who is now nine). Each has been evaluated multiple times at well known major cancer centers. Both have had periods when they were in remission only to know the sting of the word “RELAPSE.” Both have heard that it was “hopeless and nothing else could be done”. 

How have they survived? I strongly believe it is their faith. Both are not people who wear their faith on their sleeves. Their faith is quiet and unassuming, but so strong. They have been such great inspirations to so many other patients. It is also quite remarkable that they never complain about their situation. They withstand the rigors of  treatment with such grace. Despite their own illnesses, they always ask about how I am doing, how my family is, and show great concern for my staff. They have become my friends over the years.

Unfortunately, I know that cancer will take both of them someday, but I know their faith has saved them.  

I wonder if I will get cancer?  I wonder what my risks are of getting cancer?  I wonder if my children will get cancer?  These are  questions that we all ponder as we go through life.  As our knowledge of genetics increase, we are beginning to unravel many of the genes that can cause patients to be at increased risk for developing cancer.  This area of genetics has literally exploded on the scene in the last five to ten years.  I am proud of our practice as it has been on the forefront of developing a genetic program as a part of its quality improvement program.  Over five years ago, we started aggressively testing  patients inorder to identified hereditary cancer syndromes  We have identified a large number of patients who carry these genes.  In the last three months, I have seen three different women for breast cancer who I recommended be tested and were found to be positive for one of the genes that make up hereditary breast and ovarian syndrome (HBOC syndrome).  Each of these three women’s stories is illustrative of a suspicious family history and how these genes can be discovered in families.

The first patient is a 29-year-old woman who is a new patient to my office with the diagnosis of breast cancer.  She is currently receiving chemotherapy. In reviewing her family history, she had several relatives including an aunt, a cousin, and a great grandmother who had developed breast cancer.  Her cousin had also developed breast cancer at a very young age in her early 30s.  She has 3 children the youngest two are girls. Although her affected relatives are not necessarily close, I felt because of her young age and the aggressive nature of her disease, that genetic testing was indicated.  She underwent that testing and in fact did have a BRCA mutation.  We have subsequently tested four members of her immediate family and have found three of the four also carry the gene.  This has great health implications for her siblings that have  tested positive, her children and also her mother who also tested positive.

The second patient was a patient who I originally saw for breast cancer some 10 years ago.  She had continued to see me on a regular basis for ongoing follow up.  It has become a common practice for me to periodically review the patient's family history.  At the time of her initial presentation of breast cancer some 10 years ago, she was very young patient. No one in her family, at the time of her diagnosis, had developed breast cancer.  Despite seeing her at least every six months for at last 10 years, she never had brought up to me the fact that other family members had developed cancer. I recently reviewed her family history and discovered that several other family members have been diagnosed with breast cancer and an aunt has been diagnosed with ovarian cancer.  It was not until I asked her once again to review her family history that it became obvious that her family may be at high risk for genetic breast cancer.  I again recommended testing on her and sure enough, she turned out positive for the BRCA-1 mutation.  Her family is now in the beginning of having multiple family members tested to see if others in her family has the abnormal gene

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The third patient is a 70-year-old white female who developed breast cancer approximately thirty years ago.  She had a hysterectomy done as a young woman for what she said at that time was precancerous lesion. She is currently battling lung cancer. Again, in talking with her and reviewing her family history, she recently revealed to me that a 27-year-old niece was recently diagnosed with breast cancer.  In reviewing her family, the niece and several relatively distant aunts were positive, I indicated to her that I felt her overall risk of carrying one of the genes was relatively low, but there were some red flags in that her niece was so young.  Once again, genetic revealed a BRCA abnormality. 

In all three of these patients, the discovery of these genes will alter how they are managed for the rest of their lives.  All of them have children and their children will have significant risks of possibly carrying an abnormal gene and will need testing either now or in the future as they get older.  

Breast cancer is only one of the areas that genetic testing has been discovered to make a difference.  There are genetically predisposed families who develop colorectal cancer at a high rate.  There are genetic abnormalities that predispose families to the development of melanoma. Below is a link to some information on families who should be tested for hereditary colon cancer syndromes and HBOC syndromes.

www.myriadtests.com/provider/doc/Clinical-Update-v5n07-SGO.pdf 

In counseling patients who have genetic abnormalities that predispose them to cancer, it is a sometimes difficult and lengthy process to educate and give recommendations to these patients.  In BRCA carrying women, many times recommendations for bilateral prophylactic mastectomy and complete hysterectomy are appropriate.  These are sometimes difficult surgeries for women to consider.  These women also carry the burden of the knowledge that they may have passed this on to their children especially their daughters. 

As a parent of three children, the legacy that I want to leave for my children means a great deal to me.  I think this is a very common sentiment that most parents have.  I cannot imagine the worry, the fear and the sense of sadness that parents must feel knowing that they passed on a gene to their children that may forever alter their chances of living a normal life.  As parents, we strive to educate our children, build a strong foundation and give them every opportunity to succeed.  Passing on a gene that increases the risk of cancer is a unwanted legacy. By no fault of their own, these patients’ children may have to deal with life and death decisions from an early age.  Counseling these families and their children are some of the most challenging discussions that I have.  I struggle with each of these discussions to trying to explain this difficult information.  Young women's reaction to discovering that they have the gene is quite mixed.  Some feel relief knowing what they face, others go into complete denial.

My advice to all patients who seem to have a lot of cancer in the families is to seek out expert opinions, to see a genetic counselor and explore the possibility that one of the genes may run in their family.  It is my hope that as times goes on, we will develop other genetic tests and identify other genetic risk factors. These may be able to explain more of why cancer occurs and allow us to predict and hopefully prevent the suffering from these awful diseases.

I discovered two new web sites for cancer survivors. They are some of the most comprehensive sites that I have ever seen. They are just full of information. Here are the links.

www.advancedbreastcancercommunity.org

This above site is targeted towards breast cancer patients

www.survivorshipatoz.org/cancer

This site is a site for all cancer survivors.

One of the most common complaints and side effects  that  patients report after receiving chemotherapy is forgetfulness.  This forgetfulness has been termed chemobrain.  This forgetfulness can be relatively minor to very significant. Sometimes the patient may have simple short-term memory problems where they forget very minor things, other times the memory loss can be quite significant.  Recently, research has begun to unravel this side effect.That research has shown that some cancer drugs can indeed cause changes in the brain. Using PET scanning, which shows metabolic activity of the brain,these changes are being observed. These PET scans show that after chemotherapy, some patients have smaller areas of metabolism in parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought process and behavioral inhibition.  One of the areas that we see chemobrain quite readily and acutely is in young women who are receiving therapy for breast cancer.  It appears that hormonal treatment and putting a young woman into menopause causes a significant amount of problems with memory.  What is chemobrain?  An article by American Cancer Society gives some examples of what the patients call chemobrain.

• forgetting things that they usually have no trouble recalling-- memory lapses
• trouble concentrating--they can't focus on the task at hand
• trouble remembering details like names, dates, and sometimes larger events
• trouble multi-tasking, like answering the phone while cooking, without losing track of one of them-- less ability to do more than one thing at a time
• taking longer to finish things --slower thinking and processing.
• trouble remembering common words--can't finish a sentence because you can't find the right words

I have a patient who has had chemotherapy for both breast cancer, five or six years ago and then most recently she received chemotherapy for colorectal cancer.  She noticed a much more significant change in her memory with the drugs that were used for her breast cancer than with the drugs that were given for her colorectal cancer. As this shows there are likely significant differences in the effects that different types of chemotherapy have on the brain. There are likely other causes. Below are listed some of the other causes:

• the cancer itself
• chemotherapy drugs
• other drugs used as part of treatment (such as anti-nausea or pain medicines)
• patient age
• stress
• low blood counts
• depression
• fatigue
• hormone changes

                               Normal PET scan   

Changes that we see in PET scans can show up on scans 5-10 years after treatment has stopped.  There are probably multiple factors that cause this symptom.  As mentioned above, the cancer itself can cause the side effect, chemotherapy drugs, other drugs used as part of the treatment , the patient's age, stress, low blood counts, depression, fatigue, hormone changes can contibute to this problem.  It is estimated that at least 20-30% of patients who receive chemotherapy will develop chemobrain.  The American Cancer Society makes several recommendations that are listed below on managing chemobrain.

One in eight people with advanced cancer turned down recommended care because of the cost, according to a new analysis from Thomson Reuters, which provides news and business information. Among patients with incomes under $40,000, one in four in advanced stages of the disease refused treatment.

Of late-stage colon cancer patients, 12% spent more than $25,000 out of pocket, according to the survey, in which 1,767 people answered an online questionnaire. This type of survey isn't considered scientifically rigorous, because it didn't use a random sample of people. But its findings are similar to a 2006 study in Cancer, which found that cost caused more than 20% of all cancer survivors — not just those with advanced cases — to delay or miss needed care.

Today, I saw the movie, The Express, which is based on the Ernie Davis story.  It was a very wonderful movie and showed the life of an inspirational man.  Unfortunately a form of cancer called leukemia cut short his life.  His life seemed like it had so much hope and potential.  He succeeded in very difficult times. His short life affected so many people. It seemed so unfair that leukemia cut this young man’s life short.

This movie got me thinking about really how much cancer has stolen from the human race. How much potential has been lost because of this terrible disease over the last 100 years? How many children with incredible potential to change this world have died because of childhood cancer? How many mothers and fathers have died before they have been able to see their children raised? How many grandfathers and grandmothers have been taken away from their families before having the chance to influence their grandchildren and point them in the right direction?  I wonder how many scientists, mathematicians, nurses, doctors and priests have been taken from the human race because of cancer?  Has cancer taken the life of the scientist or doctor that would have discovered the cure? We will never know. There is not a more dreaded disease that takes more human potential and snuffs it out than cancer.

Those of us who work in this field on an everyday basis are awed by the patients that we treat, and we are scared for them. We are amazed by their courage. We miss them when they are gone and we grieve for them when they are gone. Their struggles remind us how fragile life is.  As a collective human society, we have lost so many people and so much potential to this disease.  Cancer has cut short so many lives and has caused so much grief in this world. I wonder if we will ever see the day where it is no longer a part of our world. It would be an amazing day and the world would be an incredibly better place if cancer was gone from this world. I pray every day that cancer fades into the past.

I saw a new patient this week who was just diagnosed with breast cancer.  She had a mammogram, her biopsy and found out the news about her having a malignant tumor all in approximately three days. I saw her in my office 48 hours after she had  gotten the bad  news.  I spent over an hour and a half with her and her husband going through the important information regarding her diagnosis. I talked about how the different aspects of her pathology impacted her overall prognosis and talked extensively about treatment.  I would say this initial appointment was very difficult. Despite my best efforts, throughout her appointment, she had this scared and frightened look on her face. By the end of the appointment she seemed better but fear could still be seen in her face and eyes.

Fear is a very strong emotion, an emotion that almost all patients with cancer have to deal with as they face their diagnoses and subsequent treatment. Fear can affect how a patient handles therapy.  Fear can affect whether a patient survives a cancer. Fear can at times paralyze the patient into avoiding therapy, not making necessary decisions and ultimately preventing a patient from choosing the right therapy.

I have another patient that I treat for breast cancer who despite every evidence to suggest that certain treatments should be given, has decided to seek complimentary and alternative therapies.  Despite every indication in her case that these alternative treatments are not effective and her disease is advancing, she continues to cling to their potential help. I believe this is significantly related to the fear that she associates with treatment. It is very possible that her decisions may cost this patient her life.

A recent article from Cure Magazine has a survey about patients fear of treatment. This survey was conducted by Harris Interactive with the help of the National Coalition of Cancer Survivorship and drug company Sanofi-Aventis.  It was released in early 2008 and offers a glimpse of just how widespread and how often fears play role in the patients' treatment.  In this survey, 83% of 326 adult cancer survivors said that they were at least somewhat fearful before they underwent chemotherapy.

After the end of therapy only 38% said their fears had been justified, 62% acknowledged they had many misconceptions before treatment.  Fear of the unknown including worries that therapy will be difficult is normal in many patients.  The fear of therapy may even be more overpowering than the diagnosis. This fear could be harmful because it may interfere with the patient's understanding about the purpose and rationale of the treatments.This may cause the patients to postpone much needed therapy, which is what I feel is happening in my own patient's case.

Below are two are graphs from the article from Cure magazine that I think are illustrative of what most patients face.  The second illustration is also illustrative of what the patients felt about their therapy once they had completed therapy.

Patients and experts agree that good comunication with the physician and other members of the health care team including nurses, social workers, therapists and patient navigators is critical.  The above-mentioned survey found that the patients who doctors make sure they understood the treatment plan have significantly less fear than those who doctor's did not clarify the plan.

I think an additional way in which the patients can battle fear is to seek out support from friends and families and also through support groups. By finding patients who have already been through treatment, patients can get advice from people that have already been through treatment.  We see this very clearly in the treatment of breast cancer where various programs try to match up previously treated patients with breast cancer patients with newly diagnosed breast cancer.  A lot of times knowing and talking to someone who has been through treatment before can relieve some of the fears that the patients have.

September has been a month that has seen a difficult change in my practice.  One of my nurse practitioners left our practice to go and work in a different area of medicine.  She had worked with me for over five years. She had been a constant force in our practice and her leaving was a great disappointment for me.  Over the years of my practice, I have always been a great proponent and supporter of the role that nurses play in the world of oncology. I feel that the role of nurses must continue to be expanded as medicine moves forward.  Many physicians have been reluctant to allow nurses to perform functions that have been traditionally reserved for physicians. I believe this reluctance is misguided.  As we move forward over the next 10 years we will be caring for many more patients. The only way that we are going to be able to take care of all these patients is by using nurses, nurse practitioners and other so called physician extenders to do an adequate job in taking care of these people.

My nurse practitioner that just left was the perfect example of the type of collaborative practice that can occur between a nurse practitioner and physician.  I had complete confidence in her ability to take care of our patients.  She brought value to every interaction that she had with our patients.  She worked tirelessly in order to leave the suffering and pain that she observed in our patients.  There were numerous patients that would rather see her than me. Patients were able to tell her about issue and symptoms that they would have maybe never tell me. I wish her all the best. She will be sorely missed.

I found this article extremely interesting. I believe in Blogging for patients. This article from the Journal of Clinical Oncology summarizes the reasons very well. Here is the link: http://jco.ascopubs.org/cgi/content/full/26/27/4504