Читать книгу The Complete Cancer Organizer - Jamie Schwachter - Страница 7
Оглавление“I couldn’t believe it—he couldn’t be talking about me. He says I have cancer? I eat right, I go to the gym, I never smoked, no one in my family has cancer. Now I’m hearing words such as biopsy, surgery, chemotherapy—this couldn’t be happening to me. I left my doctor’s office with an appointment to see a surgeon and an oncologist. All I remember thinking on my way home was they must have mixed up my tests with someone else’s. I even called the office to make sure. Then I got on the Internet—boy, was that a shock. If I wasn’t freaked out before, I definitely was after that. I couldn’t think about anything else until my appointments. This time I was better prepared—my wife was with me—she didn’t let me get away without asking all the questions on our list. Many of my questions were answered, but it seems like I always have just one more—like Columbo on that old detective show.”
—Larry, 62 years old, lung cancer survivor
When hearing the word cancer related to you or a loved one, it is common for the ears to shut down and feelings to take over. It doesn’t matter if you are a sun-worshipping 75-year-old who is told that the biopsy came back positive for skin cancer, or a young mother who is told that she will need a biopsy because the mammogram finding was concerning—it is always a stunner. Fear, anxiety, sadness, anger, disbelief, denial, shock—any of these feelings can distract you from hearing what is being said. Some people even describe a sense of relief when finally a name is assigned to the cause of their symptoms. All of these feelings are normal. Most people need time to process the information given, but feelings can get in the way. Not only in the way of hearing what is being said, but in moving forward in making decisions about your cancer care and treatment.
We all bring our past experiences to any new situation, and so it is with cancer. Some may have experience with taking care of a loved one with cancer, or for some this is the first time cancer has touched their lives. It is not uncommon for a newly diagnosed person to suddenly find out how many other people will have a story to tell of their experiences with cancer, relating both good and bad information whether you need to hear it or not. It is important that as you are discovering facts about your cancer and making decisions about care and treatment that you try to make your decisions based on facts, not largely on feelings or someone else’s experience. Every situation is unique.
So, how do you find out more about your cancer? What are good sources of information? How do you make the most out of your doctors’ visits? How do you keep all of the information you are receiving organized? Do you need a second opinion? These questions and others make up the base of what we’ll discuss in this chapter.
Information Gathering
As you begin to seek information about your cancer diagnosis, it is helpful to begin with a basic understanding of what cancer is. Cancer is very complex. It is a name given to more than 100 different types and subtypes of the disease. However, at its core, cancer is an uncontrolled growth of abnormal cells in the body. Which cells are abnormal, what organs or tissues are affected, or what makes the cell abnormal are some of the ways that cancer is categorized in order to name it and then, further, to figure out the best ways to treat it.
Cancers can be described by the type of cells that have become abnormal. This might be the cells of a specific organ and, no matter where these abnormal cells show up, they are treated as a cancer of that organ. For example, a colon cancer cell is found in a liver tumor. The cancer would be treated as colon cancer that has spread to the liver, not as liver cancer. The colon cancer would be referred to as the primary site of the cancer, no matter where it shows up in the body.
Another example of classifying cells by type is leukemia. Leukemia cancers are cancers of the white blood cells in the body, but they are further described based on which of the abnormal white blood cells are affected and whether they are fast growing (acute) or take a slower time to develop (chronic).
As scientists learn more about the inner workings of cancer cells or triggers, such as genetic changes that may cause cancers to start or not be able to stop, more opportunities become available to take advantage of these discoveries in order to develop new treatments. Knowing what makes each person’s cancer unique is being used more and more to make treatment decisions and to take advantage of new treatments being developed.
The “Workup”
Before determining that a person, in fact, has cancer and assessing how best to treat the cancer, there is a process of evaluation that we’ll call the workup. This phase of evaluation actually begins either with finding out what is causing signs and symptoms that a person is experiencing or perhaps with a standard test result. There may be an abnormal lab test or finding a suspicious lump on an X-ray or scan, or an abnormal-looking skin lesion. Whatever the abnormal finding, more testing will be recommended before naming the problem as cancer. That testing will start with a complete medical examination, including a medical history, physical exam, lab tests, X-rays, and analysis. This process can vary from one person to another. The diagnosis of cancer is not always arrived at by the same path. This part of the process is usually orchestrated by the primary care physician, who will refer to a specialist as necessary for additional evaluation.
The information obtained during the process provides clues. They may show an abnormality or the absence of an abnormality, but each result may lead to additional testing until a diagnosis is determined. The process may take time and can cause frustration and anxiety. And, lacking a firm diagnosis yet, it can be easy to try to self-diagnose and get ahead of the facts. It is important to remember that signs and symptoms overlap in many conditions. Knowing what is causing a problem is key to being able to find the right treatment.
Biopsy
For most cancers, the diagnosis of cancer is not confirmed until the results of a biopsy are known. A biopsy is a procedure where a sample of tissue is taken so it can be looked at under the microscope for evaluation of the cells. There are different types of biopsies. The determination as to what type of biopsy is used is based on what type of procedure is needed in order to obtain the information required to make the diagnosis. The biopsy procedure can range from a very simple procedure using a small needle in the doctor’s office to a surgery to remove a tumor to obtain the tissue needed for evaluation of the cells.
The tissue sample obtained from the biopsy procedure is processed in the pathology laboratory. Samples of cells are placed on glass slides so they can be looked at under the microscope by a pathologist. If there is a larger tissue sample, the specimen is processed so that tissue can be available if needed for future evaluation. Whichever pathology lab first processes and stores these samples also keeps and stores the samples long term. For example, if the slides are sent to another pathology lab for a second opinion, following the evaluation the slides will be returned to the original lab.
A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissue, and organs to diagnose disease. The pathologist provides a pathology report to the surgeon or oncologist, who then makes the diagnosis. The reading and interpretation of the biopsy slides are a process that can take from several days to a few weeks to get the final pathologic diagnosis. Cancer care in recent years has progressed to where certain features of the cancer cell are providing new targets for cancer treatment. Treatment decisions are made based on having this additional information available. Special processing of the pathology slides to obtain the information can add more time to the interpretation.
Staging
Another part of the workup process that happens before a treatment plan can be completed is called staging. Basically, the staging process is finding out how much cancer is in the body and where it is located. This process is very important for a number of reasons:
• Understanding the stage of the cancer gives doctors information they need to develop a prognosis and to design a treatment plan for the individual patient.
• Staging provides a common language for doctors to effectively communicate about a patient’s cancer, so they can work together to develop the best course of treatment for the patient.
• Knowing the stage of cancer is important in identifying clinical trials that might be a treatment option for the patient.
• Staging also helps healthcare providers and researchers exchange information about patients and gives them a common terminology for evaluating results of clinical trials and comparing results of different trials.
Staging is based on knowing how a particular cancer grows and progresses. As a tumor grows, it can invade nearby tissues and organs. Cancer cells can also break away from a tumor and enter the bloodstream or the lymphatic system (a part of the body’s immune system). By moving through either of these systems, the cells may move away from the site of origin (or primary site) to lymph nodes or other organs where they form new tumors. This spread of cancer is called metastasis. There are different staging systems and for each cancer there are key criteria that are used to properly stage the cancer. The most common staging system for solid tumor cancers is referred to as the TNM staging system. The system classifies cancers by:
T = size and extent of the tumor.
N = involvement of lymph nodes near the tumor.
M = whether or not the cancer has spread or metastasized.
The determination of what criteria make a stage is based on how the particular cancer usually behaves. This system was developed and is maintained by the American Joint Committee on Cancer (AJCC) and the Union for International Cancer Control (UICC). It is updated every six to eight years. The staging system is used by medical professionals around the world.
With the TNM staging system, there are typically four stages described. However, each of the four stages may be broken down further into sub-stages. You may hear a cancer described as a stage 1A or 3B. This number and letter combination does not mean the same thing for every cancer.
At the completion of the staging process, the surgeon or oncologist interprets the information gathered and will discuss prognosis and make recommendations for further treatment, if needed. The stage of cancer given at the completion of the staging process is always used to describe that individual’s cancer when communicating about their diagnosis in the future.
Prognosis
When diagnosed with cancer, the question patients ask most is “How serious is my cancer?” Or, “What are my chances of survival?” When the doctor evaluates how the disease will go for you, it is called your prognosis. A prognosis is not an exact prediction, but rather it is an estimate. The estimate is based on such pieces of information as type of cancer, stage of cancer, certain traits of cancer cells, and how this information compares to others with similar cancers. Such a comparison is generally discussed by use of statistics. Statistics are information that applies to a group or population of people from which the statistics were calculated. The group could be tens, hundreds, or thousands of people. However, you and your situation are unique. As there is no one else in the world quite like you, then no statistics are able to give you exact answers about the outcome of your particular cancer.
In a discussion of prognosis, your oncologist also takes into account the information that they know about you as an individual that is not found in the statistics of hundreds of others. They consider information such as your age, your overall health, how your cancer has been responding to treatment, and how you have been doing during treatment. While this additional information helps to personalize the statistics, a prognosis is still an estimate, not an exact prediction. Information about prognosis can be helpful as you are faced with many decisions, such as:
• What treatment is best for you
• Whether or not to have treatment
• Planning for care and assistance that you may need
• Dealing with financial and legal matters
Sources of Information
Your Healthcare Team
The most obvious place to start when seeking information about your cancer and treatment is with your healthcare team. It may be helpful to think of the health caregivers as part of your team, as all are there to play a part in helping you during your cancer experience. As you proceed with your cancer care, you may come into contact with different specialists, all of whom could be excellent sources of information for you.
Who Is Who?
Oncologist (or Medical Oncologist)—a doctor who specializes in treating people with cancer. A medical oncologist uses medications such as chemotherapy to treat cancer. You may be referred to an oncologist to help with the workup on your cancer, or you may see them when the diagnosis has been made following surgery or biopsy. Often, the medical oncologist becomes the “quarterback” of your cancer team. They will use the results from the workup and surgery and discuss with you the type of cancer, treatment plan, and prognosis.
Surgical Oncologist—specializes in removing tumors as treatment for cancer.
Radiation Oncologist—specializes in treating cancer using radiation.
Primary Care Physician (PCP)—works with your oncology team during your cancer treatment. They may be very involved advising on issues regarding other healthcare conditions you have, such as high blood pressure or diabetes. Or, they may take a back seat during your cancer care, resuming a more active role in your care once the cancer treatment is complete.
There are other doctors whom you may never see or talk to, but they influence your care through the interpretation of tests. These are:
Pathologist—specializes in interpreting laboratory tests and evaluating cells, tissue, and organs to diagnose disease.
Radiologist—specializes in interpreting imaging tests such as X-rays, scans, or MRIs.
Other specialists with whom you may come into contact because of special procedures they perform or advice and assistance they can provide due to their particular expertise include:
Interventional Radiologist—a doctor who does procedures such as biopsy or insertion of port-a-cath (used for giving chemotherapy infusions) under X-ray guidance.
Palliative Medicine Specialist—specializes in treatment of pain and other symptoms related to cancer and its treatment.
Fertility Specialist—Some cancer treatments may affect a person’s ability to have children in the future. A fertility specialist may be consulted after a discussion with your healthcare team about fertility and before you begin your cancer treatment. The fertility specialist will be able to discuss what fertility preservation steps you can take before you begin cancer treatment.
Other members of the healthcare team who have a very significant role in your cancer care include:
Nurses—You will encounter nurses in all settings of your cancer care—inpatient, outpatient, office, home care, or hospice. They provide care and are a valuable source of information about your cancer, treatment, side effects, side-effect management, as well as what to expect with your cancer treatment. Nurses may be providing bedside care, giving chemotherapy treatments, providing education about treatments, as well as assisting with coordination of care.
Social Workers—help patients, families, and caregivers deal with the experience of facing cancer. They are there to assist with psychological, social, emotional, and spiritual issues that people encounter during the cancer experience. They also assist with many practical needs, such as finding resources in the institution as well as in the community.
Genetics Counselor—Questions may come up regarding inherited cancer risk and a referral to a genetics counselor could be recommended. A genetics counselor is specially trained to give advice to patients and families about identifying and managing inherited cancer risk. They explain available genetic tests and also offer information about cancer screening, prevention, and treatment options related to inherited cancer risk.
Dietitian—Throughout cancer treatment, you may have questions about what to eat or side effects that interfere with eating a healthy diet. The dietitian’s role is to answer questions regarding nutrition, help with assessment of a patient’s nutritional status, and assist with menu planning.
Pharmacist—The pharmacist is becoming a more integral part of the cancer care team. They can be a helpful resource for patients or caregivers with questions about cancer medications. More cancer treatment drugs are being taken orally (by mouth) and a team from a specialty pharmacy often works with patients to monitor compliance and potential side effects.
The Internet
The Internet can be an excellent resource for information about cancer, but there can be drawbacks there as well, such as:
• An overwhelming amount of information
• Difficult-to-understand medical terms
• Reading information out of context that doesn’t really apply to your situation
• Outdated information
• Incorrect information
• False claims and misinformation
When beginning your Internet search, we recommend starting with sites that are provided as resources for patient education. The information on these sites is usually written in language that can be easily understood by the lay person, giving a basic explanation about some key concepts that help to lay a foundation for understanding your cancer diagnosis. These starting places can provide you with leads to additional resources.
As you see, websites have addresses with various endings. These endings give clues as to who may be providing the information. However, many of the endings can be registered and used by anyone, which means that not all websites match the definition of the endings they use. The exceptions are .edu (educational), .gov (government), and .mil (military), which can only be used by organizations that function as their endings imply.
Some Recommended Websites to Start Your Search
• National Cancer Institute www.cancer.gov
• American Cancer Society www.cancer.org
• American Society of Clinical Oncology (ASCO) Patient Education www.cancer.net
• Leukemia & Lymphoma Society www.LLS.org
How to Judge if a Website Is Reliable
Health On the Net Foundation (HON) is a worldwide organization based in Switzerland that developed a code of conduct (HONcode©) using the core principles of Internet reliability (see Principles for Evaluating Website Reliability). Their mission is to help standardize the reliability of medical and health information available on the Web. A website that has been certified by HON will have the symbol displayed. While the symbol indicates that the participating website agrees to abide by this ethical code of conduct, it does not rate the quality of the information provided.
Certain groups tend to provide evidence-based information and they often make good resources for information. They include government agencies, hospitals, universities, and medical journals and books.
It is a good idea to ask yourself some questions when you visit a website to help you decide how much to trust the information found there.
Who runs the website? The person or group publishing the health information should be identified somewhere on the website.
Who is paying for the website? And, what’s the purpose or mission of the website? You should find this information in the “About Us” section of the website.
What’s the original source of information on the website? If it was from a research journal or book, you should be able to locate that information on the site.
Who writes or reviews the information and who validates it? Most reputable health information sites have someone with medical or research credentials review the information before it is posted to make sure it is correct.
How up-to-date is the information? You should be able to find on the site when the information was posted or last reviewed.
What information does the website collect from you? Why? You should not provide any personal information on a website until you understand the policies under which it will be used and you are comfortable with any risk involved in sharing your information online.
Internet Red Flags
• Claims to cure incurable conditions
• Use of phrases such as “scientific breakthrough,” “ancient remedy,” “miracle cure,” and “secret ingredient”
• Claims that a product can cure a wide range of illnesses (No one product can do this.)
• Stories of people who’ve had amazing results, but no clear scientific data are presented
• Claims that a product is available only from one source, especially if you must pay in advance
• Claims of a money-back guarantee (While this guarantee may make the product seem risk-free, it’s often impossible to get your money back.)
• Websites that don’t list the company’s name, street address, phone number, and other contact information (It may only exist offshore, away from U.S. laws and regulators.)
• Companies that guarantee free or low-cost prescription drugs for a fee upfront (You are likely paying for information and applications that are available for free.)
Adapted from Federal Trade Commission consumer guidelines: www.ftc.gov
Some basic tips for using the Internet will provide you with the best and safest information:
• It is more helpful to read about your cancer after you have received a diagnosis from your doctor.
• Start with sites that are reputable and provide information using patient-friendly language.
• Ask your healthcare team for recommendations of reputable sites.
• Make note of terms or questions that arise so that you can get clarification from your healthcare team at your next visit.
• When you find an article or information on a website that you’d like to run by your healthcare team, print a copy or make note of where you found the article or piece of information.
• Always be sure to check in with your healthcare team before acting on any advice you find online. And, if it doesn’t sound right, it probably isn’t.
Principles for Evaluating Website Reliability
Authoritativeness—indicates the qualifications of the authors.
Complementarity—Information should support, not replace, the doctor-patient relationship.
Privacy—Respect the privacy and confidentiality of personal data submitted to the site by the visitor.
Attribution—Cite the source(s) of published information and dating of medical and health pages.
Justifiability—Indicates the qualifications of the authors.
Transparency—Accessible presentation, identities of editor and webmaster, accurate e-mail contact.
Financial Disclosure—Identify funding sources.
Advertising Policy—Clearly distinguish advertising from editorial content.
From Health on the Net Foundation hon.ch/HONcode/Patients/Conduct.html
Friends & Family
We often hear from patients that once they were diagnosed with cancer it seems everyone they talk to has a cancer story to relate. Some of these stories are helpful and can be good sources of information and support. Others may be passing on information that is incorrect or sharing experiences that produce more anxiety and fear.
Consider the source:
• Do you know the person giving you the information?
• Are they trustworthy?
• Do they have a medical background with expertise in cancer care? Not all medical professionals know everything about all healthcare issues.
• Have they had cancer themselves or have been a caregiver for someone with cancer?
Remember, most often family and friends are speaking from their experiences, not their expertise. They may have good intentions, but it is fine to politely tell them that you’d prefer not to discuss issues related to cancer if you could use a break from the unsolicited advice.
At a Doctor’s Visit
Depending on which type of doctor or health team member you are seeing, you should expect to get information related to the part they will play in your care during cancer treatment. The surgeon and his/her team will discuss care, treatment, and what to expect from surgery. The radiation oncologist and his/her team will discuss care, treatment, and what to expect from radiation therapy. The medical oncologist and his/her team will discuss whether or not chemotherapy or other systemic treatment is needed.
What to Bring to Your Doctor’s Visit
A current list of your medications with dosages.
A list of any over-the-counter medications, vitamins, and herbal supplements.
Any information from another specialist to which the doctor you are seeing might not have access. This could include:
Information about your medical history, prior surgeries with dates, other medical conditions.
Pathology reports, radiology reports, lab results.
Consultation notes.
A disc with images from scans or X-rays.
A written list of questions. Take the list out when you see the doctor and review it again before leaving the office to check if you covered the questions on your list.
Bring a second set of ears (someone with whom you are comfortable hearing the information and asking questions).
Consider tape recording the visit; however, be sure that everyone in the room is aware and that it’s okay for you to record the conversation.
Insurance cards.
A notebook to take notes.
A calendar.
Visit www.sprypub.com/CancerOrganizer to download.
Medication List
Medication List for: . . . . . . . . . . . . . . . . . . .
Medication name: . . . . . . . . . . . . . . . . . . .
Dosage: . . . . . . . . . . . . . . . . . . .
Directions: . . . . . . . . . . . . . . . . . . .
Reason for taking: . . . . . . . . . . . . . . . . . . .
Prescribing doctor: . . . . . . . . . . . . . . . . . . .
Medication name: . . . . . . . . . . . . . . . . . . .
Dosage: . . . . . . . . . . . . . . . . . . .
Directions: . . . . . . . . . . . . . . . . . . .
Reason for taking: . . . . . . . . . . . . . . . . . . .
Prescribing doctor: . . . . . . . . . . . . . . . . . . .
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Prescribing doctor: . . . . . . . . . . . . . . . . . . .
Visit www.sprypub.com/CancerOrganizer to download.
What’s the Plan?
When leaving the doctor’s office each time, you should understand the next steps. You might not understand the whole plan of action at once, but at least you should have a direction to move forward. You should expect to receive information in terms that you can understand. If something is said that you do not understand or doesn’t make sense, it is okay to ask for clarification. Some healthcare professionals are better at giving explanations than others, but you have the right to have providers rephrase or restate the information if it is unclear to you. Ask for your treatment plan in writing so you can research terms on your own and seek out appropriate resources. Last, ask whom you can call if you have further questions after you leave. You often have more questions as you think about the information or share it with others.
Some Suggested Questions for Your Care Team
Medical Oncologists
What is the name of the cancer, and what is the cell type?
What is the stage of my cancer?
What are the results of testing—scans, biopsies, lab results?
What do the results mean for me?
What is the recommended treatment?
Why is this treatment best for me?
What is the goal of this treatment?
What are the risks and benefits of the treatment?
How is the treatment given? How often?
What are the side effects?
How soon should treatment begin?
Where will I get my treatment?
Are there any special preparations that I should make before treatment begins?
How will we know if the treatment is working?
How do you think my cancer will go for me? What is my prognosis?
Whom do I call if I have more questions?
Do you have written information and/or recommendations of where I can find more information about my cancer and treatment?
Visit www.sprypub.com/CancerOrganizer to download.
Some Suggested Questions for Your Care Team
Surgeons, Before Surgery
What type of surgery is recommended?
What are the risks and benefits of the surgery?
Will I be hospitalized after the surgery? If so, how long?
How will pain be managed?
What is the anticipated recovery time?
Will there be any special care needed after the surgery?
Who will provide instructions for the special care, if needed?
Are there procedures needed prior to the surgery?
When should surgery be done?
Who will notify me of the surgery schedule?
When will I find out the results of the surgery?
Whom do I call if I have further questions about my surgery?
Do you have any written information about the surgery and/or recommendations of where I can find more information about this surgery?
Visit www.sprypub.com/CancerOrganizer to download.
Some Suggested Questions for Your Care Team
Surgeons, After Surgery
What were the results of the surgery?
How often will I see you for follow up?
What is the anticipated recovery time?
Whom do I call if I have further questions about my recovery after surgery?
Visit www.sprypub.com/CancerOrganizer to download.
Some Suggested Questions for Your Care Team
Radiation Oncologists
Why is radiation therapy being recommended?
What are the risks and benefits of this therapy?
How is the radiation given?
How often do I come for treatment? For how long?
What side effects should I expect during treatment and after completing treatment?
When will the radiation begin?
Are there any special precautions I should follow?
How will we know that the radiation has worked?
What if I miss a radiation treatment?
Whom do I call if I have further questions about my radiation treatment?
Do you have any written information about the radiation and/or recommendations of where I can find more information about this treatment?
Visit www.sprypub.com/CancerOrganizer to download.
Some Suggested Questions for Your Care Team
Primary Care Physician (PCP)
What role will you play during my cancer treatment?
Will you receive updates about my cancer treatment or do I need to ask my oncologist to update you?
Visit www.sprypub.com/CancerOrganizer to download.
Organizing Your Cancer Care Information
Dealing with the information related to your cancer treatment can become overwhelming quickly. It may be difficult to figure out what information is needed and how to organize it all. However, the process could be as simple or complex as you want to make it. Some people may be only comfortable with paper, notebooks, and folders. Others may do their organizing using technology. Most people in this day and age settle on a mixture of both electronic and paper.
No matter what tools you plan to use for organizing, a good starting point is to decide which information you need to have readily available (for example, what you might need to take to your appointments) and what information can be set aside but easily located if you need it. It may help to break the information into categories and then decide how to handle each category. Some of the categories of important information are:
Personal Health Information
• Ask for copies of your lab work and test results.
• Keep an updated list of your medications (prescription, over-the-counter, vitamins/supplements). Each time you see a doctor, they will likely ask to review what medications you are taking.
• Treatment records—any surgeries, radiation therapy (start and stop dates), chemotherapy (drugs, dosages, start and stop dates).
Schedules and Contact Information
• Doctors’ appointments.
• Treatment appointments.
• Personal schedule.
• Important phone numbers.
• contact numbers for your healthcare team.
• your pharmacy number.
Insurance and Billing Information
• Insurance policies and other insurance records.
• Explanation of benefit records.
• Medical bills and receipts, including prescription receipts (these are helpful at tax time).
Articles and Research
• Educational information about your diagnosis and treatment that you would like to keep.
Legal Documents
• Advance directives, living will, and healthcare power of attorney forms.
• Will, living trust, and guardianship papers.
Now that you can visualize the categories of information you will accumulate, you can start to develop an organizational scheme that fits your style. You might use separate binders per category and/or scan all documents and store them in a cloud-based storage application so you will have them readily available anywhere. Be sure and apply your organizational skills to the results of your Internet searches by creating a bookmark with subfolders.
Tools to Consider for Organizing
• Calendar for appointments.
• Notebook for doctors’ visits.
• A 3-ring binder divided into sections by the previously listed categories. (Your calendar and notebook could be part of this binder that you bring to and from appointments so you have information that you may need in both places.)
• Folders to keep important papers. A Pendaflex folder with separate labeled manila file folders may work well as different categories of information could be separated, yet in one folder.
• A box or file bin that you could use to hold papers that you’re not sure if you will need or don’t have time to organize. Using this method, you will know where the information is if you find you do need it. You can always review the box once treatment is completed, shredding papers you no longer need and filing those you want to keep.
• In our high-tech world, there are numerous features on our hand-held devices, tablets, and computers that can help with organization of information during treatment.
• A shredder is handy to use to be sure all personal information is discarded safely.
Physician Visit Record
Physician’s Name: . . . . . . . . Specialty: . . . . . . . .
Address: . . . . . . . . . . . . . . . . . . .
Phone: . . . . . . . . . . . . . . . . . . .
Answering Service: . . . . . . . . . . . . . . . . . . .
Date of First Visit: . . . . . . . . Reason: . . . . . . . .
Questions/Concerns to discuss at next visit:
Visit www.sprypub.com/CancerOrganizer to download.
Getting a Second Opinion
Once you have been diagnosed with cancer and have received the proposed plan from your oncologist, you may still have questions or concerns. You may wonder if the treatment proposed is the best option or if there are other treatments available that you should consider. Many people facing a cancer diagnosis are increasingly opting to get a second opinion.
Why would you consider getting a second opinion?
• The second opinion may be to confirm a cancer diagnosis.
• To learn more about the cancer.
• To hear different opinions on the best treatment options.
• Even if the second physician agrees with the first one, that affirmation can bring peace of mind.
• Availability of clinical trials.
Many patients worry about offending their doctor if they seek a second opinion, but most doctors understand the importance of a second opinion and are not offended. Your current doctor may even be able to recommend another doctor to you if you want.
Patients often ask if the second opinion is covered by insurance. Most insurance providers pay for a second opinion when cancer is suspected or diagnosed. However, before making an appointment, ask your insurance provider about coverage, and ask if you are required to select from a specific group of doctors. Some insurance providers even require a second opinion before they will pay for cancer treatment.
Resources to Find a Specialist for a Second Opinion
• Your current doctor may be able to recommend another doctor or specialist or you may prefer to locate one independently.
• Local hospitals, medical clinics, or cancer centers.
• Medical associations, such as the American Board of Medical Specialties, the American Medical Association, or the American College of Surgeons. These all have websites with searchable databases of doctors.
• Friends and family members.
• Cancer organizations and patient advocate groups.
If you are seeking a second opinion, you want to be sure that the doctor you will be seeing has access to all of your records from your original diagnosis. This means all information, including pathology reports, test results, treatment records, and doctor’s notes. You will want to take any X-ray or scan images (PET scan, CT scans, MRIs). These images can be downloaded onto a CD by the radiology department of the facility where they were done. You would bring the disc to the appointment. If a review of pathology is to be done, bring the pathology slides so they can be given to the pathology laboratory for processing and review by the pathology specialist. As always, bring a list of your medications and dosages and your insurance cards.
As we discussed earlier, when going to any doctor’s visit, remember to ask for the following:
• Information in terms that you can understand. If something is said that you do not understand or doesn’t make sense, it is okay to ask for clarification. This is also a good opportunity to clarify some lingering questions you may have.
• Ask for their recommendations in writing for your personal records, and also let them know if you would like them to be shared with your other doctors.
• Be sure to ask whom you may call if you have questions after you leave.
Once you’ve gathered information from your healthcare team, from your own research, and perhaps even from a second opinion, you will be best informed to start to evaluate options and make decisions about your treatment. In the chapter that follows, we will discuss those treatment options a bit more.
Website Resources
General Information
www.cancer.gov—This is the central website for the National Cancer Institute (NCI), the U.S. government’s principal agency for cancer research. NCI is mandated by U.S. law to disseminate information about cancer and cancer research.
www.cancer.net—Cancer.Net provides timely, comprehensive, oncologist-approved information from the American Society of Clinical Oncology (ASCO), with support from the Conquer Cancer Foundation.
www.cancer.org—The American Cancer Society is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem.
www.cancerandcareers.org—Cancer and Careers empowers and educates people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events.
Specific Cancers
www.breastcancer.org—Breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete, and up-to-date information about breast cancer.
www.LLS.org—The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services.
Internet Reliability
www.healthonnet.org—Health On the Net Foundation
www.ftc.gov—Federal Trade Commission
Second Opinion
www.abms.org—American Board of Medical Specialties
www.ama-assn.org/ama—American Medical Association
www.facs.org—American College of Surgeons
Many quality resources exist for specific cancer types and patient needs—so many, in fact, that we could list only a few here. See pages 22–27 for online research guidelines.
