One immediate response on getting diagnosis of anal cancer is to start searching the Internet, particularly if you had not been aware of this cancer, as I was not, before hearing that you had it! Many of us are already web-savvy and will just plunge ahead. But there are many pitfalls out there, particularly in the advocacy of alternatives to the standard treatment for anal cancer. One useful companion in your search: The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis, by Andrew Schorr with Mary Adam Thomas (2011; www.WebSavvyPatient.com). Schorr is a leukemia survivor, and so is cancer-savvy as well as web-savvy! His book will show you how to take charge of your treatment and recovery using online resources, and how to avoid the pitfalls. See more about the book in the New York Times; and check out the website for updates.
See also this discussion in Cure magazine by Paul Engstrom - "In the Know: How to find reliable cancer information online." And the website 1UpOnCancer discusses the two general approaches (conventional and alternative) you are likely to find, and how to take the best from each, here. The Dana-Farber Cancer Institute has a good discussion, including links on avoiding "quack" sites promising cures that are literally too good to be true and other scams. See also the Food and Drug Administration discussion. See this Cure Magazine story for more “fake” stuff. And here’s a story about misinformation that notes one source claims that anal cancer is the result of the patient being a “pain in the butt.” !!!
Key Websites dealing with Cancer and Anal Cancer
Cancer Guide Org — A powerful statement by Stephen Jay Gould, a well-regarded biologist at Harvard University diagnosed with a severe abdominal cancer. Gould leanred that the median survival for his diagnosis was 8 months; he lived on for twenty years and died of a different cancer. Read Dr. Gould’s essay before you read about the statistics for anal – or any – cancer. The host site was created by a kidney cancer patient, and is maintained and updated in his memory; the sections on researching your treatment, clinical trials, and the like, are especially important. And please also read this essay on "How Long do I have to Live?" by neurosurgeon Paul Kalanithi - also from the perspective of his own cancer diagnosis. A companion piece to Dr. Gould's essay deals with what will happen to you from the moment that you hear the words "you have cancer." Author Jeff Tomczek captures succinctly how this disease changes you - forever - and the keys to fighting it.
The HPV and Anal Cancer Foundation - A full array of resources from the major foundation focused on this cancer, including a Peer to Peer program for patients to support each other. They offer a newsletter - subscribe here.
Medline on Anal Cancer - a reliable source of basic information from the National Institutes of Health; you can subscribe to email updates.
National Cancer Institute: Anal Cancer — National Cancer Institute page on anal cancer
American Cancer Society: Anal Cancer — The American Cancer Society page for anal cancer. The site also contains extensive material on cancer in general and its treatments.
The Farrah Fawcett Foundation - commemorating the life of actress Farah Fawcett and her death from anal cancer in 2009, this foundation works to provide funding for research.
The University of California at San Francisco website’s portal for anal cancer, with much detailed information.
U Penn — The University of Pennsylvania Abramson Cancer Center page for anal cancer. Many useful pages about various aspects of cancer in the home site.
Colon-Rectal — A colorectal site managed by a group of doctors, with a summary of information on anal cancer. The site makes it clear than anal sex is not a necessary condition for anal cancer; thank you doctors!
Cancer Net — The anal cancer page of the American Society of Clinical Oncology; the site has a wide range of information on cancer and its treatment, and interesting material on psychological dimensions of cancer.
Cancer Research UK — The anal cancer page of a UK charity dedicated to funding cancer research and improving information for patients. Excellent information on the cancer itself, and coping with treatment and recovery.
Macmillan UK Cancer Support has a comprehensive anal cancer guide.
The Mayo Clinic website has some succinct information pages.
Medline Plus, a service of the US National Library of Medicine, has extensive information, with an exhaustive list of other sources.
The M.D.Anderson Cancer Center has information on diagnosis, treatment, and numerous links to educational resources.
National Comprehensive Cancer Network — The National Comprehensive Cancer Network’s website for patients, caregivers, and their families. The NCCN, a not-for-profit group of 21 of the country’s major cancer treatment centers, publishes the guidelines for specific cancer care – on registering (free) you can download the current year’s guidelines for anal cancer treatment. The site also provides extensive information on life with cancer and life post-cancer, including a discussion on paying for cancer treatment.
The Jay Monahan Center for Gastrointestinal Health has information on the full range of gastrointestinal cancers, including anal cancer, their prevention and treatment, and material on maximizing your nutrition in the fight against these cancers.
The Hospital of the University of Pennsylvania maintains a cancer information site which includes an anal cancer discussion here.
Websites on HPV
The HPV Support Network — Information on the HPV virus and its cancer consequences
About the HPV Test — More on HPV infection
https://www.immunize.org/technically-speaking/20191022.asp - News about the HPV vaccine
Websites on Treatment and Coping
Chemocare — information on chemotherapy, side effects, and nutrition during chemotherapy.
Coping with Cancer: Managing Physical Effects
Acupuncture in Cancer Care — Acupuncture in Cancer Care: The authors discuss its role in management of cancer-related problems such as pain, hot flashes, and chemotherapy-induced nausea and vomiting, and conclude that it can be incorporated into supportive oncology care. Additional information links are provided.
Nutrition in Cancer Care — A site created by Patrick Quillan, a Ph.D nutritionist who was head of nutrition at Cancer Treatment Centers of America for a decade, with an extensive professional background. The site provides access to chapters from his book, and discusses the use of nutrition in cancer treatment. His suggestions are sensible, and he deals openly with the kind of “eat carrots and you won’t need chemotherapy” arguments that detract from understanding what nutrition can do. One segment speaks directly to the oncologist. He promotes his book but otherwise includes no advertisements.
Can Swear is dedicated to helping patients cope through jokes and funny stories. Its creator is a young adult, but laughter is for any age!
WhatNext provides interactive posting for cancer patients and survivors, and posts articles of interest for both patients and survivors.
The American institute for Cancer Research, which focuses on diet, weight and physical activity in both successful treatment and successful survivorship, offers a host of information sheets to download on its site, along with recipes and research news.
Coping Magazine offers many online articles for cancer patients.
Cure Magazine is available free to cancer patients.
Websites on Recovery and Coping
Cancer Recovery Foundation - a group of charities dedicated to cancer prevention and survival; with affiliates in Canada, Germany and the UK. An initiative of Greg Anderson, a survivor of metastastic lung cancer.
One way of coping is to write a blog - for example, see Can't Help Myself, the blog of anal cancer survivor, nurse and health educator Mary-Jo Murphy.
Coping with Cancer - a site from Coping with Cancer Magazine; unfortunately anal cancer is not included in the list of material on specific cancers, but the general articles are useful.
Life Beyond Cancer — The website of a foundation established by the US Oncology group of treatment centers.
Life Expectancy - this site discusses the issue of cancer's impact on life expectancy, and, like the essay by Dr. Gould, highlights the importance of understanding that each patient/survivor is a unique person and story. Your future is not determined by the statistics!
Lance Armstrong’s website and Foundation — a website on healthy living, fitness and diet. A link takes you to the Armstrong Foundation, with various programs for cancer support and action.
The National Patient Advocate Foundation has a patient services arm that can help with insurance issues, medical debt, and job retention problems.
Seize the Days offers patient stories highlighting the ways that cancer fighters celebrate their days.
Palliative care - pain-reducing and management may be necessary for some patients. This does not mean end-of-life care. If you have problems coping because of pain, seek help!