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    Endometrial cancer, what online resources did you find the most helpful?

    Asked by WhatNextEmails on Tuesday, March 26, 2013

    Endometrial cancer, what online resources did you find the most helpful?

    We need your help again. We're working to improve our resources page and want to know, What online resources did you find the most helpful? For example, did you google your diagnoses? What cancer sites did you find? Did you look for financial resources, help with prescriptions, help with treatment expenses? Travel expenses, or a treatment center? Give us the run down of the first 48 hrs after you were diagnosed that you spent online. What did you want to know? And did you find it?

    With this information we can develop more resources for our fellow WhatNexters to help them find the help they are looking for, as quickly as possible. Give your tips and resources you found helpful and we may use your information in our articles to help others in the future.

    3 Answers from the Community

    • BuckeyeShelby's Avatar

      I did spend a lot of time online researching. I started out at the ACS website. I also spent a lot of time on the website for the hospital I'd be going to. It took awhile to find the What Next website. I wanted to find out what my disease was, what my prognosis might be (a dangerous thing, especially not knowing what stage I was -- but also figuring I'd be 3 or 4 since nodules were found in the hernia sac during a hernia repair), freaking out about prognosis. Bing was my friend instead of Google. Who knows what sites I was perusing while plugging "endometrial cancer" into the search engine. I also spent a lot of time looking at my company's internal website to figure out FMLA stuff -- how long I could be off, what I needed to do, etc.

      I am a research oriented person, so I didn't stick w/just online. I went to the local library and probably took out most of the books they had on cancer, especially endometrial. And I hit the bookstores and Amazon.com as well. I did the same sort of thing when I lost my job. Crisis mode for me tends to be research mode.

      over 3 years ago
    • Cheryl2's Avatar

      Ditto what Shelby said. I also looked at hystersisters and the yahoo group for uterine cancer. I took question lists from several places, combined them and added my own questions to take to my surgery appointment.

      over 3 years ago
    • Ivy's Avatar

      Here are some of the sites that I found helpful.






      http://www.practiceupdate.com/Update/ This site is really for physicians, but you can sign up, it's free, and you can get the latest updates in oncology.




      There are many more sites, but these provide perhaps more detailed information than many others on the web.

      One thing that I found missing almost everywhere is detailed information about what to expect from the actual treatment protocol for high-dose brachytherapy to the vaginal cuff. Some site needs to provide detail, including straight-talking language, explicit diagrams, and much exactly what to expect during the treatment and in side effects after this therapy. It should also explain how the timing is determined when interspersed with chemotherapy, and so on. The radiologists and major hospitals tend to gloss over details, which leaves the patient woefully unprepared. I find I can handle almost anything if I am well-prepared, and I will always have the psychological scars from that treatment and the lack of information from both my doctor and from web sources ahead of time. So perhaps someone knows of a great website, but if not, please someone, create such a site.

      over 3 years ago

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