I just received my preliminary diagnosis. What is my next step?
First of all, just breathe and stay off the Internet! Many fears about cancer are based on stories, rumors, and old information. It is important to talk about your diagnosis with your doctor and Oncology Nurse Guide. They can answer your questions and help allay some of your concerns. Most people feel better when they know what to expect. They feel less afraid when they learn about cancer and its treatment. One of the first steps after your diagnosis is meeting with a medical oncologist and/or a surgeon. Based on the type of cancer you have, a full workup will be ordered to evaluate the stage of your disease. Your doctor will order the appropriate testing such as scans, biopsies and/or blood work that will help in the staging process. Once a diagnosis and staging of the cancer is determined, your doctor will create a treatment plan that may include one or more of the following: surgery, chemotherapy, biotherapy, hormone therapy or radiation therapy.
Will the treatments affect my fertility?
For younger patients or women of childbearing age receiving chemotherapy, biotherapy or radiation therapy during the reproductive years, it is essential that their doctor develop a fertility preservation plan with them (if time allows) before treatment begins. The chemotherapy drugs and dosages as well as the underlying cancer itself may affect fertility. There are new treatments that have been developed to preserve fertility when a patient is receiving chemotherapy. Fertility preservation options should be discussed with your doctor prior to starting treatment. In addition, insurance coverage for some of these options could be costly. Patients should be referred to a reproductive specialist who can work with your oncologist and other members of the cancer treatment team.
Are clinical trials an option?
Any time you or a loved one needs treatment for cancer, clinical trials are an option to think about. Cancer clinical trials are designed to test new ways to treat cancer, manage cancer, find and diagnose cancer, and/or manage symptoms of cancer or side effects from its treatment. Clinical trials are available for most all stages of cancer. It is a myth that they are only for people who have advanced cancer that is not responding to treatment. Talk to your doctor and your Oncology Nurse Guide to see if a clinical trial may be an option for you.
Regarding nutrition during my treatments, where do I begin?
During your cancer treatment it is important to incorporate the new four food groups in your diet, which includes fruits (3 to 4 servings a day), legumes (2 or more servings a day), whole grains (5 or more servings a day), and vegetables (4 or more servings a day). A diet that is low in fat and rich in fiber is important. In addition, eating mostly foods of plant origin, eating less animal based foods, keeping processed and preserved foods to a minimum, and eating ¼ cup nuts per day are healthy recommendations to follow. Healthy eating can boost the immune system, repair damaged tissue, and help get you through treatment. Unfortunately, cancer treatment can affect your appetite, taste, swallowing and digestion. Always let your doctor and Oncology Nurse Guide know the symptoms you may be experiencing such as nausea, bloating or indigestion. They can provide you with many tips and recommendations to help you manage the side effects of treatment. In addition, certain medications may be prescribed by your doctor to combat side effects and/or a referral to an oncology dietician may be made to help you maintain proper nutrition.
What is the difference between hospice and palliative care?
Hospice care is a form of palliative care provided to patients with advanced cancer and other diseases. The goal of hospice care is to help patients who are no longer receiving treatment for their disease cope with the physical and emotional effects of death and dying. The focus of care is no longer a cure; rather, it is on ensuring compassionate care that allows for the best quality of life possible. Hospice care can take place at home or in a specialized facility.
Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. It can help prevent or treat symptoms and side effects related to cancer and to cancer treatments. Palliative care can also help with emotional, social, practical, and spiritual problems. Palliative care can be given at the same time you receive cancer treatments. You may get palliative care when cancer is diagnosed, throughout treatment, during follow-up, and at the end of life.
What are the benefits of hospice?
Recognizing that many people with advanced cancer feel overwhelmed when they are told there is little chance of a cure, hospice care works to ensure that you approach the end of life with focus on comfort, peace, and dignity.
When a cancer patient’s health care team determines that the cancer can no longer be controlled, or the patient decides to stop all treatment, testing and cancer treatment often stop. But the person’s care continues, with an emphasis on improving their quality of life and that of their loved ones, and making them comfortable for the following weeks or months ahead. Medicines and treatments people receive at the end of life can control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some people choose to remain at home while receiving these treatments, whereas others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, social, and spiritual issues at this time.
What are all these different doctors for?
An oncologist is a doctor who specializes in treating people with cancer. There are three main types of oncologists: medical, surgical, and radiation oncologists. These different types of oncologists often work together to treat a person with cancer. A medical oncologist specializes in treating cancer with chemotherapy or other types of therapy and/or medications. A surgical oncologist specializes in the removal of tumors and surrounding tissue during surgery. A surgical oncologist also performs biopsies (the removal of a small amount of tissue for examination under a microscope). A radiation oncologist specializes in treating cancer with radiation therapy (the use of high-energy x-rays or other particles to kill cancer cells). In addition, there may be other types of oncologists involved in your treatment such as a gynecologic oncologist (who focuses on the care and treatment of women with gynecologic cancers, such as uterine cancer and cervical cancer) or a hematologist-oncologist, who specializes in the diagnosis and treatment of cancers of the blood, such as leukemias, lymphomas, and myelomas.
It can be overwhelming dealing with all these different doctors, but it is their in-depth knowledge of a specific area of cancer treatment that contributes to your overall health management.
Is oral chemotherapy as effective as IV therapies?
Oral chemotherapy is any drug you take by mouth to treat cancer. Oral chemotherapy can be taken as a liquid, tablet, or capsule that you swallow.
Oral chemotherapy is as strong as other forms of chemotherapy and works just as well. The only real difference between IV chemotherapy and oral chemotherapy is that with oral chemotherapy you are responsible for making sure you take your medications on schedule while monitoring and recording any side effects. Oral chemotherapy is easier because it can be taken at home. You don’t need to go into a hospital or clinic for every treatment. However, it is extremely important to take your oral chemotherapy exactly as your doctor or nurse tells you to.
The drawback to oral chemotherapy is that is can be costly. Many times you have to pay more out of pocket for these drugs than for IV drugs. If you have insurance, this might mean a higher co-pay. Make sure you know how much you will have to pay for each treatment. Contact your insurance provider and your Oncology Nurse Guide to assist you with this process.
Can you help me with our medical expenses?
Yes, navigating financial matters for patients is part of our job. We can recommend affordable treatment options that you can discuss with your health care team. We can direct patients to the appropriate resources that may offer some financial support. RN Cancer Guides can assist with insurance documents, and whatever healthcare financial concerns that may arise. The understanding of the workplace healthcare policies and accommodations can help you afford your treatments. We have strategies in place to help you get the support that is necessary for you and your family, so you can feel secure in knowing you have an advocate to help you with your needs.
What is required for me to do regarding the Disabilities Act?
The American Disabilities Act supports discrimination protection for patients and caregivers in the workplace, as well as for reasonable accommodations that may be put in place in order for the patient to be able to work. RN Cancer Guides can review copies of your employment contract, and the employment manual from the human resources department at your place of employment. We review the policies and gain an understanding of your benefits so we can help you complete the appropriate forms. Understanding this information is an important part of your journey.
What if I don’t have insurance?
With the establishment of the Affordable Care Act, everyone is entitled to have insurance coverage, even with a pre-existing condition. Visit the government website: www.healthcare.gov regarding information for the uninsured. In addition, RN Cancer Guides can assist in finding other resources to help you get coverage.
I have a cancer policy included in my insurance coverage. How does that work now that I’ve been diagnosed?
To understand your cancer policy, it is important for you to contact your insurance provider. If your employer has a human resources department, they can give you information on their medical leave policy and on short term disability. Am I eligible to receive benefits from the ADA? If I take short term disability, how will this affect my job? These questions and others can be reviewed with your Oncology Cancer Guide who is prepared to discuss the options and resources that are available to you.
Is there a cost associated with the services of RN Cancer Guides?
Yes, there is a cost for our services. We have assembled 3 convenient packages that identify specific objectives that are commonly requested. The services can be paid for by either the patient, their caregivers, friends or family members. We understand that everyone’s needs are different and do our best to accommodate every individual client/family need when it comes to pricing and payments. However, the benefits of your RN Cancer Guide will typically make up for the cost of our services.
What kind of support services are available to me and my family?
A cancer diagnosis has a profound effect not only the patient, but also on his or her family. There are many challenges to face. On top of choosing treatment, patients may have to deal with side effects, absence from work, emotional and family issues. Spouses, children, siblings, and parents may each play a specific caregiver role at the time of diagnosis, as well as throughout treatment and/or end-of-life decisions.
The Oncology Nurse Guide is your single point of contact who will be there with you every step of the way. In addition, many resources are available to help assist a patient and their families through this process. Some examples are as follows: Cure Magazine (www.curetoday.com), the American Cancer Society (www.cancer.org) and the National Cancer Comprehensive Network (www.nccn.org/patients). In addition, there are many other national and regional resources available as well as support through social media, support groups, and various printed materials. Your Oncology Nurse Guide will discuss with you the services that will personally assist you and your family.
How do I go about obtaining an advanced directive?
Advance directives are legal documents that allow people to communicate their decisions about medical care to family, friends, and health care professionals in the event that they are unable to make those decisions themselves—for example, due to being unconscious or in a coma. The two main types of advanced directives are a living will and a medical power of attorney (also known as health care surrogate). Your Oncology Nurse Guide will discuss these documents with you on the initial visit and inform you on how they can be obtained.
Should I be consulting with a financial advisor?
A cancer diagnosis affects more than your health; it can affect every part of your life, including your financial well-being. This is true whether you are newly diagnosed or a long-time cancer survivor. During treatment, many cancer patients do not want to spend energy on financial matters. Or maybe handling finances was never your strong point. Either way, seeking professional financial assistance may be beneficial to you and your family. In addition, if you itemize your taxes, you will be happy to know that our services are tax deductible.
I was advised I should get my affairs in order, what other preparations should I be making?
Although hearing the words “You need to get your affairs in order” is never easy for anyone to hear, it is important to start planning sooner rather than later. In addition to obtaining a living will and medical power of attorney (health care surrogate) as mentioned in the answer above, here are a few basic but important steps to take:
- Name someone you trust as durable power of attorney (POA). This could either be the same person as your medical power of attorney or somebody else you can rely on to manage your daily affairs (i.e. paying your bills, running your business, etc.)
- Write a will. Consult your attorney as to whether you need a basic will or a trust fund.
- If you have dependent children, name a guardian in your will to take care of them. If you have a disabled child, you may also need to consult a professional who can guide you through the maze of Medicaid and Medicare rules.
- Discuss your final wishes. For most people, this is a very difficult subject to address. Doing so, however, can ease the trauma of your death for your loved ones by preplanning. As previously mentioned, discuss your concerns with an estate attorney.
For more information, please visit the United States Department of Health and Human Services National Institution on Aging website: http://www.nia.nih.gov/health/publication/getting-your-affairs-order
How can I have the most effective conversations with my doctors?
The cancer patient is ultimately in charge of his or her health. A good doctor-patient relationship is an essential component of cancer care. A good relationship is built first upon trust. A patient needs to be able to trust the doctor and other members of the health care team. A lack of trust can create a barrier to receiving the care he or she needs and deserves. A good relationship is also sustained by mutual respect. The cancer team deserves respect, as does the patient. The doctor should offer the patient a central role in the decision-making process, and work with them to select a cancer treatment plan right for the individual. Moreover, a good partnership with the health care team is based on open and effective communication.
For tips on making it easier to talk to your doctor and other members of your health care team, please visit the following website provided by the American Cancer Society: http://www.cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/talkingwithyourdoctor/talking-with-your-doctor-toc
What about my health in general? Can I still schedule dental appointments while I am undergoing treatment?
You may be surprised that your dentist is important in your cancer treatment. If you go to the dentist before chemotherapy begins, you can help prevent serious mouth problems. Side effects often happen because a person’s mouth is not as healthy as it should be before chemotherapy starts. Not all mouth problems can be avoided but the fewer side effects you have, the more likely you will be able stay on your cancer treatment schedule.
It’s important for your dentist and cancer doctor to talk to each other about your cancer treatment. Be sure to give your dentist your cancer doctor’s phone number and keep your dentist informed of any side effects that relate to your lips, mouth and/or throat.
It is important to see the dentist one month, if possible, before chemotherapy begins. If you have already started chemotherapy and didn’t go to a dentist, see one as soon as you can. For more information on health and nutrition, please visit our blog at www.RNCancerGuides.com.
I enjoy exercising. Will my normal workouts have an adverse effect on my treatment?
Research strongly suggests that exercise is not only safe during cancer treatment, but it can also improve physical functioning and many aspects of quality of life. Moderate exercise has been shown to improve fatigue, anxiety, and self-esteem. It also helps heart and blood vessel fitness, muscle strength, and body composition (how much of your body is made up of fat, bone, or muscle).
People getting chemotherapy and radiation who already exercise may need to do so at a lower intensity and build up more slowly than people who are not getting cancer treatment. The main goal should be to stay as active as possible and slowly increase your level of activity over time after treatment.
Certain issues for cancer patients may prevent or affect their ability to exercise. Some effects of treatment may increase the risk for exercise-related problems. Some examples:
- People with severe anemia (low red blood cell counts) should delay activity until the anemia is better.
- Those with weakened immune systems should avoid public gyms and other public places until their white blood cell counts return to safe levels.
- People getting radiation should avoid swimming pools because chlorine may irritate the skin at the treatment area.
If you were not active before diagnosis, you should start with low-intensity activities and then slowly increase your activity level. Certain people should use extra caution to reduce their risk of falls and injuries:
- Older people
- Those with bone disease (cancer in the bones or thinning bones, such as osteoporosis)
- People with arthritis
- Anyone with nerve damage (peripheral neuropathy)—numbness and tingling in your feet or hands.
Please discuss your questions and concerns about your exercise regimen with your doctor and your Oncology nurse guide before starting treatment.
How do I handle the fatigue?
Cancer can be debilitating, but so is chemotherapy treatment. The most common side effect of chemotherapy is unrelenting fatigue. The following recommendations will help to improve your strength and stamina while receiving cancer treatment:
- Take in enough calories. This isn’t the time to start a diet — even if you’re overweight.
Your body needs plenty of nourishment to help you maintain your strength during treatment. In fact, eating enough calories might be more important than eating healthy during chemotherapy treatment.
- Fortify with supplements. Poor nutrition can contribute to fatigue. So to ensure you get all the necessary nutrients during treatment, take multivitamins and other supplements as recommended by your doctor or Oncology nurse guide.
- Control nausea. Tell your doctor or Oncology nurse guide right away if you experience nausea and/or vomiting. There are many options available for treating nausea, and various combinations of medications that can be tailored to meet your needs.
- Manage stress. Anxiety was linked to fatigue in chemotherapy patients in a 2008 study published by the American Society of Clinical Oncology. One effective way to relieve the anxiety of treatments is to try journaling or blogging about your experience a few times a week. In addition, participating in a support group or talking with a close friend or family member is very helpful in reducing stress.
- Get enough sleep. Worrying about your chemotherapy treatments not only will give you insomnia but will also zap your energy. Meditation and prayer have helped many patients relax before bedtime. If insomnia is particularly bothersome, discuss with your doctor or Oncology nurse guide about medications or supplements that you can take temporarily to help you sleep.
- Exercise. Sunlight, fresh air and moving your body will definitely help fight fatigue. If weather permits, try aiming for a ten to fifteen minute walk outside daily. A study done in the Netherlands in 2010 found that breast cancer patients who participated in an 18-week aerobic exercise program were significantly less fatigued than breast cancer patients who did not exercise.
- Medications. Ask your doctor about medications that can be prescribed to increase energy and combat fatigue.
- Work schedule. Talk to your doctor about your work schedule and how chemotherapy treatments may impact your work performance then speak with your employer about these concerns.
All of these suggestions will help you fight fatigue and help you feel your best while you undergo treatment.
What’s the best way to share my health condition with my co-workers?
How open you are with your co-workers about your cancer is your personal decision. In some work environments, it may not benefit you to share details. For instance, it may not be a good idea to share everything with your colleagues if you work in a highly competitive and fast-paced workplace. You might want to decide who you know best and who will most likely understand your situation, then confide only in those people. They in turn, might be able to help you develop the best plan for telling others and suggest ideas on how to deal with work. Try not to feel pressured to share or explain things. Only you can decide what works best for you and your situation.
If you do decide to share your diagnosis, be prepared for multiple reactions. Some of your co-workers will react with understanding and offers to help. Others may feel uncomfortable around you. Some people may be reminded of a loved one’s time with cancer. Many find cancer an unpleasant reminder of their own mortality. Some co-workers may resent that they had to take on extra duties on your treatment days. Others may ask intrusive questions about your health and treatment, or they might avoid you. Those you work with may react awkwardly out of a vague fear or uneasiness, thinking of cancer as some kind of lurking danger. For more on dealing with these people, you may want to read the American Cancer Society’s document, Talking with Friends and Relatives About Your Cancer. It will help to think ahead about how you will handle other people’s reactions, and have a plan for what and how much you want to share with them.
How do I tell my Manager?
If you are worried about approaching your boss and discussing your cancer diagnosis, please keep in mind that federal and state laws protect cancer patients from discrimination. For example, employers are legally required to help you do your job during or after cancer treatment by providing reasonable accommodations, such as an adjusted work schedule or time off for doctor’s appointments. Talk with your employer about what you might need at this time. For more information, please see the American Cancer Society’s following links: the Americans With Disabilities Act and the Family and Medical Leave Act . You can get copies of these documents by calling them at 1-800-227-2345, or read them online at www.cancer.org.
Is the employer of my primary caregiver required to make any accommodation so they may be available to assist me?
Yes. If your caregiver is employed, they can take advantage of the Family and Medical Leave Act (FMLA). This act requires employers with 50 or more employees to provide up to 12 weeks of unpaid, job-protected leave for employees who need time off to care for a seriously ill family member. Employers are required to continue benefits during the leave period, and some may allow a flexible or reduced work schedule. The FMLA also permits employers to provide leave provisions that are more generous than the act requires. Talk with your employer to learn about the specific provisions your company offers. For more information on the Florida Medical Leave Act, please click on the highlighted link above.