How to Survive a Cancer Diagnosis: Practical Strategies to Improve Care
Paul M Zeltzer, MD, Neuro-oncologist, author and formerly with the Maxine Dunitz Neurosurgical Institute at Cedars Sinai Medical Center
This is a summary of a lecture that was presented on June 8, 2004.
Information has become a mechanism for patients to exercise a greater sense of control and feel less victimized by the disease.
The model in which health care information is sought and treatment decisions are made has changed over the years. Prior to the 1970s, medical information and decisions were primarily from a “doctor-centric” model. In this model, the physician was the source of recommendations. This model was true for healers as well as physicians. However, in the post World War II era a different model began to evolve as the public gained greater access to resources such as public libraries, magazines and books. In the 1980s foundations and societies in the area of cancer started to provide information about specific kinds of cancers to the public. The concept of second opinions for diagnosis and treatment became more popular and accepted. Former Vice President Al Gore also helped to dramatically change access to information when the Internet was opened to the public as a worldwide library of resources during the 1990s. As patients became more involved in their healthcare, the “doctor-centric” model began to give way to a “collaborative” model for decision making. Patients have become active participants in their health care decisions. Knowledge with regard to cancer has become a source of empowerment. Information has become a mechanism for patients to exercise a greater sense of control and feel less victimized by the disease.
The Internet has become a source of much good and bad information for people with cancer and their family members. Recent studies looking at Internet use for healthcare suggest that over 60 million people seek healthcare information on the Internet annually. Of these patients 25% indicate that their medical decision-making is affected by the information that they obtain. In addition, 79% of patients want to interact with their physicians via the Internet but only 21% of physicians want to interact with their patients through this technology. The Internet is perceived to be both accessible and private. Further, it provides information not being given to patients by the current health care systems. There does not seem to be an age bias. As of 2001 studies of seniors indicate that 49% of seniors subscribe to an Internet provider compared to 46% of individuals in the 18-49 year old age range. Seventy-eight percent of current users on the Internet have been doing so since 1995 (almost a decade).
One of the effects of this access to information is the ability of patients to obtain and bring information to the doctor-patient relationship. This can challenge the doctor’s knowledge. While the information may sometimes be relevant, oftentimes the information obtained isis not because the Internet provides unfiltered information. Yahoo or Google search engines may come up with thousands of references. The order that they appear may be related to marketing strategies and not based on the value, integrity or importance of the information. Despite these difficulties, the Internet has value and is certainly an integral part of current care.
Navigating a cancer diagnosis is not easy. One family member of a patient made the following statement summarizing the experience, “Newly diagnosed cancer patients are like people who don’t know how to swim being thrown into deep water with no flotation device.” It would seem that patients need to develop strategies to become organized in how to successfully gather information that will help them make informed decisions about treatment options.
This article describes some important strategies for keeping organized, managing information, and reducing the psychological experience of being overwhelmed. All of these strategies can assist the patient and family in receiving the best possible care.
Patients need the following:
- A Medical Dictionary. This will assist in understanding reports. Most reports contain unfamiliar words that may not appear in a regular dictionary.
- A notebook or file for financial records. Information that must be carefully organized includes bills, insurance information, authorizations, denials, and copies of all correspondence made by you or the insurance company. Be sure to write down the date, the name(s) of the individual(s) with whom you speak and a summary of what was discussed for all telephone calls.
- A notebook for Medical Records. Developing a portable notebook system is a very important part of managing your own care. Some of the sections you should include are:
- Business Cards: Obtain and save a card for your doctor and each of the consultants in one section of the notebook. This can be very important because your doctor may not have this information readily available should he/she want to contact them regarding your care.
- Laboratory Reports: When you have blood work done, ask for a copy of the results so you will have your history with you.
- Pathology Reports: Treatment decisions often change and pathology is a factor. Keep a copy of every pathology report. In addition, when seeking additional opinions, make certain that you know how to access the slides from your tumor or ask to have a set available for re-review. Second opinions on pathology can be very important and the slides or actual tumor may be needed for this. Check with the second opinion consultants to find out what they need.
- MRI Scans. There are two parts to the MRI scan, the physician’s dictated/written report and the actual film (or CD-ROM disk). You often need both.At the very least, have the dictated results with the knowledge of where to get the scans and how long it will take to get a copy made. Many times you can request the scans to be copied onto a CD.
- Questions and Answers. Devote a section to questions and write down the answers that you receive to these questions so that you will have this as a reference.
- Second (or third) opinions. After seeing you for a second opinion, the physician usually dictates a consultation note or letter. Make sure that you get a copy. Also write down your questions for the expert. You can write or tape record the answers that you receive.
How to Reduce Being Overwhelmed
Second Person at Doctor Meetings. Having someone accompany you to physician visits can reduce anxiety. This gives you the opportunity to have an extra set of ears to listen to information. You can compare notes afterward to make sure you heard everything. Hopefully you can choose someone who listens well and also can provide you with emotional support. This person may think of questions or clarifications, of which you may not have thought, and can help insure that all of the questions have been answered. Finally, it may be good to have someone available who can be a safe driver.
Inquire about Clinical Trials. Clinical trials are sometimes the best way to get the latest, state-of-the-art or new experimental treatments. There is also some evidence that people on clinical trials live longer than those getting conventional therapy for recurrent tumors. This is an advantage to being cared for in an academic research environment.
Participate in a Support Group. There are many different types of groups for all different types of cancers and phases of the disease. These groups may be offered through the hospital, the Ted Mann Family Resource Center or another organization that is specific to cancer. In addition, there is a growing Internet based source of support for individuals who may not have resources such as the Ted Mann Family Resource Center in their local community. There are often email communities for people with very specific types of cancer. [Editor’s Note: Be aware that the information exchanged in these uncontrolled chat communications may be incorrect. Always check out suggestions with your primary physicians, mental health care providers and other medical care team. If a chat room is upsetting, stay out of it.]
One Day at a Time Philosophy. This is a simple philosophy but it may be important to focus on “one day at a time” until you get adjusted to your situation. Some suggestions to facilitate this come from patient quotes. “I told my husband we could laugh or cry for whatever time he had, but I wanted to make happy memories. None of us are guaranteed tomorrow.” “Find something to rejoice and be glad about every day.”
Your Dream Team
Your dream team is a combination of people that will help assist with your treatment and rehabilitation. Because of the complexity of cancer therapy, many different types of specialists may be needed to treat the disease and to keep you living well during and after treatment. Not every patient will need all of these professionals, but there can be many healthcare providers participating in your care. Discuss with your doctors and mental health professionals who needs to be on your team and for what purpose. Below is a list of the potential members of your dream team. Note the last member of the team is a dentist. Many people do not realize how important it is to take care of dental problems prior to chemotherapy. Infections in the mouth can result in tooth loss and may be problematic during treatment. Seek consultation early on. Because a team can be large, it is important for patients to understand who is responsible for what parts of the care: who do you call for medication changes, with whom should you speak about changes in tumor, who to call if you develop a fever or feel unwell, etc.
- Caregiver, caretaker, care-partner
- Primary doctor
- Radiation Oncologist
- Social Worker
- Rehabilitation specialists (Physiatrist)
- Occupational and Physical Therapy
- Plastic Surgeon
Selecting Specialists and Getting Second Opinions
Many people wonder whether their doctor is the best one to treat their disease. It is very important to seek care from physicians who have expertise and specialize in the particular cancer that you have. For cancers that are more rare, it may be particularly important to search for the right team. Asking the physician how many cases of the particular cancer they have treated in the past year can be one way to assess experience and it is always better to have someone who has had more than 25 cases in a year. For example, survival in brain tumors has been found to be associated with the number of resections that the neurosurgeon has performed. Look for experienced professionals.
A common patient question is whether they should seek a second opinion. Getting a second opinion is a means to help ensure that you will continue to get the best and most up-to-date choices for treatment. It does not mean that you mistrust your physician or that you are not currently getting good care. Second opinions can help you assess your current treatment plan and confirm that you are on the best course for you. It can provide reassurance, peace of mind and assist you in feeling comfortable with your current team. A second opinion can also lead to new options and sometimes those options may be available from your current team. A second opinion can also lead you to change to a new team for a particular stage in your care. You may develop confidence in the new team or they may have specific studies that are available.
Second opinions can occur within your own healthcare system. For example, your case can be presented to the hospital tumor board. Patients can always make this request. If you are within a prepaid health plan or HMO there are ways to obtain information about experts and to get additional opinions from other experts. Oftentimes, second opinions come from outside the system and you may need to make a specific request and obtain authorization for these. You will need to advocate for yourself, but it can help to have your primary care physician or a specialist helping you to get this approved.
Sometimes it may be best to pay for the consultation, in which case you should be prepared to make this consultation everything you want it to be by having all of your medical records available to the expert. You can reduce the cost of second opinions by having all the tests done within your current medical environment and taking the most current results with you. Also, keep in mind that there are various experts within each health plan. By talking to your primary care doctor and asking questions about who are the most experienced physicians with your type of cancer, you may discover that you have an expert available to you. By inquiring and then requesting that you be referred to that particular doctor, you can get the best care.
If your physician discourages you from getting a second opinion, you may want to question whether this is the right physician for you.
The following checklist may help you to assess your team and your care:
- Do my doctors take time to answer my questions?
- Do my doctors communicate well with each other?
- Have I been shown my scans?
- Have I been told the name/grade of my tumor, its location, and why I have the symptoms I do?
- How secure is the pathologist with the diagnosis?
- If I ask for a second opinion, will my doctor refer/recommend me to an unbiased outside doctor?
- Is the care given/directed by an expert?
- Does the medical center specialize in my tumor?
- How many people does my team treat each year? Is it greater than 25?
- Has my case been presented to the hospital Tumor Board?
- Am I told whether my tumor could be more completely removed or operated upon elsewhere? Where?
- Am I informed about how my activities of normal daily living could be affected by treatments? What if I do nothing?
- Does this center have clinical trials for my kind of tumor?
When you are having consultations from different specialists it is important for you to understand who they are and why they are there. Here is a series of questions to ask about a consultation and the outcome that you should expect to receive.
- Which hospital department are you from?
You establish the pattern of interest and search for knowledge.
- Why has Dr. X asked you to consult on my case?
You understand the purpose of the consult.
You are assured that the consult is for you.
- Will you be discussing the results of your findings with me or my doctor?
You have clarified the objectives of the consultation and how results will be communicated to you.
- The questions I would like answered are….
You get answers to your specific questions.
- May I please have a copy of your consultation for my organization notebook?
You will have in your possession:
- A summary of the consultant’s opinion
- His or her business card
- Alternate recommendations, besides final one
- You will have arranged to have a copy of the final written report sent to you.
Communication with Medical Team
Sometimes patients have concerns about how they are doing when they are in the hospital. It is important for patients and caregivers to have appropriate information. The following five “mantras” are suggested to get this information:
- Ask you nurse and house staff once a day, “How am I doing compared with yesterday?”
- Ask your doctor for your “problem list.” This list defines the reasons that you are in the hospital and will help you to judge progress.
- Ask for results the day that the test or procedure is performed.
- Do not accept “You are doing fine.” This gives you no information.
- Do not rely solely on the nurse to “filter” or infer information from the doctor. Speak directly to the doctors and house staff.
Sometimes communication can be difficult with medical personnel. You have a right to know what is going on and to understand your treatment and care. Here are some hints to help resolve difficulties or ways to get the attention you need if you feel that your concerns have not been appropriately attended to.
- Identify one physician and one family member or friend to receive information.
- Write down your questions. Make a direct, reasonable request with the content of the question relevant to the medical provider’s area of expertise.
- Request a discussion of your concerns with the attending physician in charge of your case.
- If you have difficulties with a consult, ask tactfully for another consultant.
- Ask or demand to speak to the Chief of the Service if these other procedures do not resolve the issues.
- If you are still unable to resolve the problems, consider transferring your care to another medical center.
Importance of Caregivers
Caregivers are very important in your overall care. They may do more than your medical team in helping you live a quality life. Maintaining good relationships with your caregivers is essential for your well being. It is important to remember their valuable role. Your caregiver may do many of these essential tasks listed below:
- Calls the doctor on your behalf
- Helps decide if an ER or doctor visit is needed.
- Helps when you just feel lousy and provides you with someone to talk to, brings medications, prepares a hot bath.
- Drives and accompanies you to rehabilitation visits and doctors’ offices.
- Discusses information with you after the doctor visit.
- Keeps your materials organized.
- Pays the bills and balances the checkbook and takes care of a host of medical insurance issues.
- Screens phone calls when you do not want to talk.
- Keeps extended family up-to-date with progress reports.
- Does Internet/library searches looking for new approaches when you may not have the energy.
- Knows about and helps you with constipation or other bowel problems.
- Trouble shoots if doctors are not communicating effectively with you.
Once you find the roadmap to follow, many of you can accomplish what seemed an insurmountable task at the time of diagnosis. The steps outlined in this article may be part of that roadmap to assist patients in advocating for themselves within institutions and getting their needs met. Using the skills that you had prior to the cancer diagnosis and those of your network of friends and family may help get you through this difficult time. Do not forget to look for resources within your medical community whether it is a primary care physician, nurses, social workers or programs such as the Ted Mann Family Resource Center . There are often many people that want to help you on your journey to live well.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.