It's easy to do, but you may call them toll-free. At this time, their email response time exceeds 72 hours. For time sensitive needs, please contact the American Cancer Society directly at 1-800-ACS-2345 (1-866-228-4327 for TTY). Cancer Information Specialists are available 24 hours a day to answer your questions.
The N.C.C.S. is also a wonderful resource for information, and you've got to admit it, if you or anyone you know and love receive a diagnosis of cancer, you're going to want information. Well, we're bring you more...
NCCS's Step-by-Step Guide to Cancer Resources OnLine
When you or someone you know is diagnosed with cancer, one of the first things you want to do is find out more information. Often, the Internet is the first place you will look. But with so much information available online, the challenge is to sort out the best, credible resources from less helpful sites.
NCCS also knows that those who have been there...cancer survivors and those who care for them...frequently know the best resources for helpful information. That's why they designed CanSearch, and we at http://www.caregiverhelp.org/ support their comprehensive guide.
Their organization and ours (including myself) also know that cancer affects both you and your family. And while it is a disease that affects you physically, it also affects you on an emotional, social, economic, and spiritual level. To make things easier, CanSearch is divided into two sections:
1)Diagnosis and Treatment and
2)Living with Cancer.
Each section has subsections. A description of these subsections follows:
Diagnosis and Treatment
- Basic Info outlines the sites to visit and the steps to take to find the latest medical & treatment information, including information on clinical trials
Living with Cancer
Diagnosis and Treatment
The first step in dealing with a cancer diagnosis is understanding its physical effects. That means asking about treatment options to include clinical trials, side effects of treatment, and how to assess the risks and benefits of treatment. It also means communicating with your health-care providers about your personal concerns and knowing and understanding your rights — informed consent, confidentiality, and patient records. For a step-by-step guide to dealing with medical and treatment information, read the Basic Info section below for more information.
BASIC INFO
To help you locate the latest medical & treatment information about cancer.
Our first stop on our journey of online cancer information is http://www.cancer.gov , run by the National Cancer Institute (NCI) - the leading source of cancer research information in the United States. If you are not very comfortable navigating this site, you also can call NCI's Cancer Information Service at 1-800-4CANCER.v/
Click on http:// and you will find a wealth of information. Start with the PDQ, which stands for Physician Data Query. The PDQ contains information on the major types of cancer that affect children and adults. It also includes information on AIDS-related malignancies and brief summaries for several less common cancers. If you have been diagnosed with cancer, you will want to begin with the Treatment PDQ. Then locate the files that match your (or your loved one's) own diagnosis.www.cancer.gov/
The PDQ is available in two formats...patient and health professional. You may want to start with the patient version, but, in general, the health professional version is more comprehensive and relatively "easy-to-read". Summaries listed in the health professional version provide detailed information on prognosis, staging, and treatment for each disease, and they refer to key citations in medical literature, and also link to abstracts. So, you may want to take a look at both versions. In either case, the PDQ is a good place to start in talking to your doctor about your different treatment options. If you haven't heard of a medical specialist called an "oncologist", you will now. Oncologists spend years after becoming doctors to research and learn everything there is to know about cancer.
Another great place to begin and our next stop is OncoLink, the University of Pennsylvania's premier cancer resource. OncoLink is one of the best sources of information found on the Internet. ookmark this site so that you can check back regularly to find out the latest in cancer treatment and for comprehensive psychosocial support. Here in The Daytona Beach area
Now, let's enter the “Types of Cancer” menu on OncoLink’s Web site where you will find a listing of specific types of cancer. Click on your particular disease and OncoLink will give you information on treatment options (much like the PDQ we just visited), links to credible resources and disease discussion groups, psychosocial support and experiences, as well as other helpful information. There are a number of other menus on OncoLink that you may want to check out. Since OncoLink is updated weekly, you may want to check "What's New This Week" every so often to see if there have been updates about your type of cancer.
People Living With Cancer offers information on over 90 types of cancer as well as sections on learning about cancer, diagnosis and treatment, coping, and survivorship.
Click here for NCCS’s overview of different types of cancer and an explanation of different types of treatments.
At this point, you have done the basic research for your particular cancer. You probably have met with an oncologist or are about to meet with one. One thing is certain — you have lots of questions for your oncologist!
It is a good idea to go to your oncologist with a list of prepared questions to ensure that you leave your appointment understanding your disease, your treatment options, and the possible side effects of a particular treatment. NCCS has done a lot of the work for you. Our publication, Teamwork: The Cancer Patient's Guide To Talking With Your Doctor, gives you the framework you need to formulate a comprehensive list of questions. Click here to order your own copy of Teamwork.
In addition to Teamwork, you will want a copy of the Cancer Survival Toolbox®. The Toolbox is a self-learning audio program that teaches you the skills you need to better communicate with your health-care team as well as your family. The Toolbox is an invaluable aid to those who have been recently diagnosed with cancer. Click here to order your free copy now!
With these resources in hand, you are well prepared for your next doctor's visit. One of the options you will want to discuss with your doctor (or oncologist) is participation in a clinical trial. Clinical trials are the way we find out what works best in treating people with cancer — and can put you on the cutting edge of cancer treatment. It's important for you to understand the clinical trials process, so click here to read more about clinical trials.
As you see, there is a great deal of information available online. If you're ready to dig deeper, here are some steps to take in researching articles that pertain to your type of cancer. Again, let's begin our search on OncoLink. Here's how to proceed:
- Find the "Quick Search" box
- Enter search terms. Start with just the name of your type of cancer. You can add related terms that you have learned from your physician or from literature you have read, including what you have just learned from OncoLink and the PDQ. For example, you can search types of treatments, institutions you have heard of, physicians, or anything else.
- Your search will return a list of all articles using those terms. View these articles onscreen, and if they look promising, save them for future reference.
- Also, you may try a "Boolean" search. If you are not familiar with this type of search, it is not as complicated as it sounds. With a Boolean search, you use AND, NOT, OR and other modifiers that will add to, or detract from, the number of finds it makes. For instance, using AND looks for a combination of the words selected. Using NOT will eliminate any finds, including words after the search word. Using OR tells the search engine to look for either of the terms given.
Remember, OncoLink is updated regularly, so check the “What's New This Week” section about once a month to see the most current information. Likewise, the “Cancer News” section offers you the latest in cancer news.
You may also want to find out about the latest research on cancer. The latest research papers from NCI and others are provided in a searchable database through the National Institutes of Health and the Library of Medicine’s PubMed service. M.D. Anderson’s OncoLog is a quarterly journal geared toward general practitioners concerning developments in cancer treatment. Check both regularly for new developments in your area of interest.
Healthfinder® is a gateway consumer health and human services information Web site from the United States government. Healthfinder can lead you to selected online publications, clearinghouses, databases, Web sites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.
The Oncology Nursing Society (ONS) is a professional organization of more than 33,000 registered nurses and other health-care providers dedicated to excellence in patient care, education, research, and administration in oncology nursing. It's also the largest professional oncology association in the world and provides information and education to nurses around the world. In addition, the Society plays an active role in advocacy activities at the local, state, national, and international levels.
The American Association for Cancer Research (AACR) was founded in 1907 by a group of eleven physicians and scientists interested in research, “to further the investigation and spread the knowledge of cancer.” Today, AACR accelerates progress toward the prevention and cure of cancer by promoting research, education, communication, and advocacy.
ASCO, the American Society of Clinical Oncology, is the world’s leading professional organization representing physicians who treat people with cancer. From the ASCO Web site you can access their latest research on cancer prevention, diagnosis, and treatment.
General information on drugs of all types, sorted by brand name, generic name, manufacturer or therapeutic treatment is available from Drug InfoNetSM. The explosion of information about cancer on the Web makes it impossible to list all resources here. Check out MedWeb; following its links will definitely add to your stack of information! It may prove a little confusing though, since MedWeb addresses a variety of medical sources — not just oncology. Still, a little digging will lead to great riches.
Another good source of such information is available at New York Online Access to Health (NOAH). NOAH provides access to high quality full-text consumer health information in English and Spanish that is accurate, timely, relevant, and unbiased.
The American Institute for Cancer Research and The Cancer Project provide information on diet, nutrition, and cancer prevention.
HealthAtoZCom lists various sources on cancer and other medical issues. It also allows one to search on a specific topic and is a good checkpoint to see that "all bases" have been covered. Another listing for Web resources for all types of cancer is provided at Medical Matrix.
Doing all of this research will probably make you feel overwhelmed by all of the medical language used. Click here for a glossary of common medical terms that you may wish to print out or just go back to from time to time as a reference. You can also use the search facility in most browsers to look up a term that might have you confused.
The Merck Manual, long considered the major handbook for all physicians, is now available on the Web, searchable for specific information. Although it is free, you must first register to use it.
If you are dealing with a cancer diagnosis, you are likely to have a biopsy. To get help understanding what a biopsy is and what to expect from its results, check out The Biopsy Report: A Patient's Guide.
Now that we have done the research, let's turn to some important checkpoints.
One good starting point is a home page similar to this one. The site is called CANCERGUIDE, a Web site created by Steve Dunn. Although there may be some duplication with CanSearch, it offers you another viewpoint and is another example of a survivor helping other survivors. In particular, check out this important read: "The Median Isn't the Message" by noted author Stephen Jay Gould. Gould was diagnosed with a rare type of cancer and was told he only had months to live. Using scientific statistical methods, Gould shows why they were wrong in his case. So, read it and learn how such estimates are determined.
AMC Cancer Research Center & Foundation is a not-for-profit research institute dedicated to the prevention of cancer and other chronic diseases. AMC's Web site includes information about current research at AMC and about general health and cancer information.
The Jessie Albert Resource Centre - Pathways to Healing is an organization that provides information and networking for people dealing with cancer. The Web site gives a guide to helping oneself, describes the process of alopathic treatment and recuperation, lists questions for stages of the process, and describes complementary therapies. There is a glossary of medical terms, a list of helpful organizations, and recommended books and Web sites.
Don’t forget to look at our information on Palliative Care and Symptom Management. This guide contains information on treatment side effects, pain, end-of-life issues, clinical trials, issues of heart and mind, care for children, nutrition, exercise, and caregiving. You will also find more resources and helpful questions to ask your doctor.
Living with Cancer
At NCCS, we know that cancer affects both you and your family. Moreover, it is a disease that affects you on a physical, emotional, social, economic and spiritual level. Those who have been there — survivors and those who care for them — have found some wonderful support services online. So, let's see what's out there.
We've already talked about cancer's physical effects. Now, let's take a look at cancer's impact on the emotional, social and spiritual side of you. Finding out what you and others can do to improve the quality of your life can make a tremendous difference in facing a disease like cancer. Communicating with your family about your fears and hopes as well as about how your family relationships and functioning have been affected by cancer is very important. For many cancer survivors, reaching out to others through peer support is key. NCCS's CanSearch can connect you to other online communities, chats and sites that provide peer support and counseling services by clicking here. Many have found hope by hearing about others' tales of survivorship.
Unfortunately, cancer takes a toll on more than your physical and emotional well being. The economic effects of cancer can be devastating as well. That doesn't have to be the case — if you are facing a cancer diagnosis, you should:
- know your rights and responsibilities under your insurance and health plans and how to get the most out of your coverage,
- know and exercise your employment rights and
- get help with legal and financial concerns.
NCCS has been at the forefront of these issues by helping to author the Americans With Disabilities Act in 1990 and working on the Family and Medical Leave Act. Some of the best resources on insurance and employment issues for cancer survivors are NCCS's own publications, What Cancer Survivors Need To Know About Health Insurance and Working It Out: Your Employment Rights As A Cancer Survivor, as well as our Cancer Survival Toolbox® module on "Finding Ways to Pay for Care." For parents dealing with a child with cancer, you might want to review both materials — even though your child may not yet be thinking about his or her prospects in the workforce.
Support Services
Helps you identify peer support & other services
For many, a diagnosis of cancer can be emotionally devastating and often people find support groups — either in person or online — are invaluable to their recovery.
To begin, you will want to start with Association of Cancer Online Resources which is commonly referred to as ACOR. ACOR maintains a list of electronic mailing lists for most types of cancer, and covers topics such as spirituality, hospice care, and infertility, to name a few. ACOR is by far your most comprehensive listing of cancer mailing lists on the Web. Many of the disease specific groups (site specific cancer organizations) offer mailing lists, too. Click here to check out a quick guide to these site specific groups.
CancerCare is a national nonprofit organization whose mission is to provide free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs – including counseling, education, financial assistance, and practical help – are provided by trained oncology social workers and are completely free of charge. CancerCare offers one to one and group counseling nationwide via their Web site or by calling 1-800-813-HOPE.
If you are looking for a face-to-face support group, you should start at your local hospital. Many hospitals offer a variety of cancer-related support groups. If your hospital does not offer a support group, the social work staff there might know of another area hospital that does.
Your local Leukemia & Lymphoma Society or American Cancer Society chapter probably offers a number of support groups. To find out about support groups in your area, go to www.leukemia.org or www.cancer.org. Both sites let you search by state or zip code.
Both Gilda's Club and The Wellness Community offer support and networking groups, lectures, workshops and social events in a non-residential, home-like setting. All services are provided free-of charge.
Gilda's Club focuses on providing places where people with cancer, their families and friends join others to build social and emotional support as a supplement to medical care. Click here to find a Gilda's Club.
The Wellness Community offers drop-in and on-going support groups, networking groups for specific types of cancer, educational workshops, stress management sessions, lectures by experts in the field of oncology, and social gatherings — all with laughter, joy and hope. Click here to find a Wellness Community.
The R.A. Bloch Cancer Foundation matches people who are newly diagnosed with trained volunteers who are survivors of the same disease type.
Many disease or site specific groups offer their own support groups as well. Be sure to check out our listing of these groups here.
Palliative Care and Symptom Management
While you are being treated for cancer, you may experience a variety of problems with pain. For most cancer patients, cancer pain can be effectively managed. For some, with fewer medical options (often elderly patients or those diagnosed at very late stages), palliative care is offered to alleviate pain symptoms.
To view a short video about palliative care, please click here. This video features patients and doctors from Massey Cancer Center and Fairview Health Services. (High-speed connection recommended for optimal viewing.)
Cancer Care Pain is an excellent place for cancer pain information. Today, there are medications designed specifically for cancer pain. You should be aware of what those medications are and their potential effects on you. Check out Talaria's site which provides reference information on this subject.
The other two outstanding resources on pain information are the Wisconsin Cancer Pain Initiative and the American Pain Society.
End-of-Life Issues & the Grieving Process
There are as many ways of dealing with care at the end of life as there are different cultures and individuals. Bill Moyer’s PBS Series On Our Own Terms takes a look at some of these many approaches.
Once a taboo subject, only recently has end-of-life care gained attention. In 1998, NCCS devoted an entire twenty-four page newsletter to this subject. The issues discussed in that newsletter remain current today.
Aging with Dignity recognizes the challenge of how we, as a nation, maintain a quality of life for our aging population. If you are dealing with a serious, life-threatening illness such as cancer, you must deal with how you would like to be cared for at the end of life. Aging with Dignity offers "Five Wishes" to help. Five Wishes is a (nationally recognized) living will that has been crafted with great care and compassion. It not only makes you think about how you would like to be cared for should you become seriously ill, but it is easy to understand and safeguards the patient's best interests in its recommendations.
Hospice provides care, comfort, and support to patients at the end of life as well as their families. Because they deal with care at the end of life on a daily basis, hospice professionals and volunteer staff focus on improving the quality of a patient's last days. Hospice also provides bereavement and counseling services to families. For information on hospice care, visit the Hospice Foundation of America.
Regrettably, cancer is not yet curable for all. For those who have lost a loved one to cancer there is excellent help on the grieving process from GriefNet.
Created in 2005 by the unification of Compassion In Dying and End-of Life Choices, Compassion & Choices supports, educates and advocates for choice and care at the end of life.
Gaining Inspiration
Hope is critical to anyone dealing with a cancer diagnosis. NCCS knows how powerful stories of survivorship are and how you can gain inspiration.
NCCS exercises great caution in providing you with links to online sources of medical, insurance, and legal advice. Here we break from our rigorous review of Web sites and offer you links to sites hosted not by professional organizations but primarily by cancer survivors, families, or others touched by cancer.
There is an inspirational tale of a very brave woman who did not survive her cancer but showed us all how she gained the strength to cope with this frightening disease and to conquer it rather than let it conquer her. So as a most important resource we invite you to read EVE COLEMAN: Living, Dying and Cancer. Many more personal stories are available on OncoLink.
NCCS features stories from Everyday Heroes who are cancer survivors.
For inspirational stories from young adults, check out the Ulman Cancer Fund for Young Adults and the National Collegiate Cancer Foundation.
A wealth of such information is available from The Anderson Network. This is a group of survivors coming through the M.D. Anderson system joined together to help others in similar circumstances. Available at this site are not only many more survivors' stories previously listed here, but humor and advice on how to speak with your doctor.
