• Where do people get information about different treatment options? I want to self educate myself, but I do not know where to start looking.

    Asked by bnaht on Tuesday, June 26, 2012

    Where do people get information about different treatment options? I want to self educate myself, but I do not know where to start looking.

    7 Answers from the Community

    7 answers
    • nancyjac's Avatar

      Just as a caveat to what Dave said: Just because you have the same type of cancer does not mean you have the same treatment options. There are lots of other factors that determine what treatment options are feasible for you. So my recommendation would be to discuss what options are on the table for you with your oncologist first. Then come here or do other research on those options. If you spend a bunch of time looking into treatments that aren't appropriate for you, you will just end up frustrated, wasting time, overwhelming yourself, and end up with a headache.

      about 8 years ago
    • IKickedIt's Avatar

      I met with several different oncologists and spoke with many, many people who had experience with my type of colon cancer. I am normally not that type of person, but I was calling people who were friends-of-friends, or the husband of a colleague who was an oncologist or even a family friend of my parents who is an oncologist in another state. I found so many people coming forth to offer guidance and support. I took copious notes, asked tons of questions, and went to my other doctors to ask for their opinions, and I always kept them in the loop.

      Although I am an IT professional, I tried to not go online to research myself until I had a course of treatment, and then I researched a bit. I left the medical decisions in the hands of the professionals. I was fortunate that there is a standard course of treatment for my type of cancer, but I was scared and didn't know, so I literally lined up several oncologists in a row and visited them all and didn't decide on one until I felt most comfortable with his recommendations, his mannerisms, office practices, etc.

      about 8 years ago
    • Ivy's Avatar

      You should try the NCI (National Cancer Institute), the American Cancer Society, and the major cancer hospitals (Sloan Kettering, Johns Hopkins, Dana Farber, U Texas Medical, and others) websites for the most detailed, basic facts. I've found that you can access oncology journals (Oncolink and Medscape) and other professional journals online generally without a subscription, too, or with a free subscription/online account. You will find more appropriate information if you have accurate, detailed data about your own cancer--such as exact staging, etc. I always want to know everything, but that's not true for everyone. It could be needlessly alarming if you're doing all this research ahead of facts about yourself.

      about 8 years ago
    • attypatty's Avatar

      Dear Bnaht:
      There is so much information, good, bad, and ugly, out there, it is easy to become overwhelmed. Still, you are wise to educate yourself. I admit I became quite obsessed (and still am) with searching online, in libraries, in bookstores, magazines, journals, even textbooks, to find out more about cancer, treatment, options, etc. I avoided the blogs, chat rooms (other than this one!), because I was looking for reliable information rather than personal experience. Some of the best websites are as follows:

      National Cancer Institute: http://www.cancer.gov/

      National Comprehensive Care Network: http://www.nccn.org/index.asp

      Mayo Clinic: http://www.mayoclinic.com/health/breast-cancer/ds00328/dsection=treatments-and-drugs

      Johns Hopkins University: http://www.jhu.edu/search/results.html?cx=017423984450203939999:snybmwgm5ea&cof=FORID:9&ie=UTF-8&q=breast%20cancer

      Center for Disease Control: http://www.cdc.gov/cancer/breast/basic_info/treatment.htm

      These sites have a wealth of information and can lead you to other sites, articles, etc.

      Don't be afraid to read the professional journals and studies. Sometimes they are dense and use a lot of acronyms, but you will be surprised how quickly you learn the meanings of the words and abbreviations they use.

      I would encourage you to read all you can. When I confessed to my oncologist that I had become obsessed with reading this stuff, she encouraged me to educate myself, even told me to call her if I needed help understanding some of it. She is always willing to talk to me about the latest studies, information, etc. I hope that your oncologist is the same.

      Fight On,

      about 8 years ago
    • outdoorboywa's Avatar

      All of the above advise is great! I'll add my own 2 cents.

      There is a great resource for doctors called UpToDate, it is a service that compiles and presents the most up to date research on any medical copy. Some health centers may be able to give you access through their libraries. It is especially helpful if you have a less common kind of cancer that doesn't have standard protocols. The research is academic but presented for doctors to be able to use it.

      If you have a university nearby, or possibly even a community college, you can access many journals online at their library, take a thumb drive with you, you can down load them and read them on PDF later.

      Use the information from the NCI, NCCN, PubMed, etc. for a base of knowledge. Find out what cancer center is leading the field in you particular diagnosis. Get educated and get second and third opinions. Consider the relative benefits of different treatments against the longterm side effects and quality of life. Keep a notebook of the questions you want to ask and the conversations and answers that doctors give you.



      about 8 years ago
    • bnaht's Avatar

      Thank you to all of you that have answered so far. I appreciate your support and guidance.

      about 8 years ago
    • larryjay's Avatar

      Someone earlier suggested "UpTo Date". It is amazing! My experience is that most other sources provide (redundent) information a mile wide and an inch deep. Some time ago a bright young Radiologist @ Memorial Sloan Kettering in NY sent me various reprints giving detailed answers to my questions. He got them from "up to date", to which he subscribed. I went to their website myself (www.uptodate.com). I was impressed and took advantage of a "30 day all access pass", which at the time cost $44.95. During that time I downloaded and printed a ton of info, including other health topics. I now have files about a foot thick (only a slight exageration). As I am approaching two years from diagnosis, I intend to do the same again for additional information in the comming few days.

      Each topic starts with an overview of the condition, within which are numerous links to relevant sub topics, which again link to further sub topics. You can drill down to great detail. The language is typically understandable, though I would sometimes need to review other topics for a clear understanding.

      I can't recommend another source more strongly, for you, or any others seeking information.

      Best of luck,

      P.S. would love to read your feedback if you explore it.

      about 8 years ago

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