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

    Asked by WhatNextEmails on Tuesday, March 26, 2013

    Breast 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.

    15 Answers from the Community

    15 answers
    • JennyMiller's Avatar
      JennyMiller

      Of course, I went online and desperately searched for any and all info. Some of the info weakened my positive attitude. When I shared it with my sister, she brought it to my attention that certain articles were based on Trials from 10 years ago. So, I learned to be selective on what online resources to access. WhatNext has been the most supportive, positive and encouraging. I did find another Site -- Long term survival of breast cancer patients with extensive lymph node involvement - This site was great as it supported the positive attitude that is so necessary in my battle. I did google my diagnosis and was satisfied with the Mayo Clinic Site. I looked up Cancer Staging on the National Cancer Institute Site (www.cancer.gov) and was satisfied. Hope this helps

      over 4 years ago
    • JudyS's Avatar
      JudyS

      I was told to watch for what I was looking at online and to trust what I read on the American Cancer Society's website and breastcancer.org I found these 2 to be most helpful. Of course I did go to other websites but I remembered not to panic by what I was reading.

      over 4 years ago
    • Gabba's Avatar
      Gabba

      The site I found most helpful was BreastCancer.org. Well developed and laid out...anticipates most of your questions and /or concerns...I actually printed out most of their materials and put them in my own binder for handy reference...have referred many newly-diagnosed patients to this site (I am a nurse practitioner and well aware of the harm that can come from misuse of websites..this is one I highly recommend ).

      over 4 years ago
    • SDomiano's Avatar
      SDomiano

      The Susan G. Komen site, they will give you resource numbers to help with gas, bills and other things that you can't pay while under treatment, just call them. There are also resources at you hospital that help. I hope this helps.
      Sherri

      over 4 years ago
    • SandiD's Avatar
      SandiD

      I, too, found www.breastcancer.org to be the most helpful site. I also joined an online support group on Yahoo. Like this site, speaking to patients who have been through this really helped. American Cancer Society has great info too. One thing I did was Google famous breast cancer survivors. After reading scary stories online, I found this comforting. Knowledge really is power, thanks for being here!

      over 4 years ago
    • SDomiano's Avatar
      SDomiano

      Susan G. Komen site is very useful, and the Cancer Center of America can give you a list of resources for helping pay your bills call them.

      over 4 years ago
    • SDomiano's Avatar
      SDomiano

      Oh call the American Cancer society they will give you a list of places that will help you with your bills, gas and stuff like that.

      over 4 years ago
    • jad's Avatar
      jad

      Referred many times prior to, during, and even after my chemotherapy to
      www.chemocare.com/chemotherapy/drug-info

      I regard the site as reliable since my oncologist gave me a printout from it.
      Main page is www.chemocare.com

      The site covers most other cancers, not just breast cancer.

      over 4 years ago
    • carter4's Avatar
      carter4

      I googled everything! Most important was to find sites that help Stage IV folks.

      over 4 years ago
    • chutzpah's Avatar
      chutzpah

      BCmets.org has lots of info about stage IV and a great group or people
      cancercare.org has some programs that can help
      gildas club while not a strictly a web source can put one in touch with people in their area
      whatnext.com is an answer and comment site which has helped me with info
      breastcancer.org is really one of the best

      over 4 years ago
    • hikerchick's Avatar
      hikerchick

      www.breastfree.org helped me maintain the strength I wanted to resist people telling me I should get reconstruction. There are many reasons I didn't see it as a good idea, and I'm so very thankful I didn't get reconstruction. They also have step by step instructions to make your own leisure breast forms. I found it to be empowering.
      I wanted to find current photos of double mastectomy patients so I would have a clue what I might look like. When I saw the scars, I thought they must be images from 20 years ago, thinking surely they could do better than that now. Without dates on the images and dates of how long post-op, there was no way for me to know if it was current surgical work or not. I found out the hard way that indeed the scarring is somewhat crude, even in this day and age. If your site were to provide images with dates and details, that would probably help a lot of women know what to expect. Also, prophylactically having BMX might look much better because of no lymph node removal and other factors. It would be helpful to some women to see that differentiation in images too.
      And of course, American Cancer Society and breastcancer.org.

      over 4 years ago
    • Doberwomyn's Avatar
      Doberwomyn

      I have not been able to find resources for women who choose only surgery would like to see that

      over 4 years ago
    • janstar47's Avatar
      janstar47

      I searched for "breast cancer support group". Did not find what I was was looking for... I found bits and pieces of information and I wasn't looking for lots of details about breast cancer at first. I wanted to 'talk' (via topic chat or similar) to other women with New diagnosis. How did they cope? How did they feel? What were their first thoughts? Who did they want to talk to? Did they want a small group who would pray for each other? I hoped to find that. I gained a group to pray with me quickly via friends and friends of friends via Facebook. For the disease itself, chemotherapy and radiation topic, I found "whatnext" group to bring HELP forward. How about a "Talk ABout IT" section, then we place TOPIC and it's easy to find. There was a time I mainly wanted a spot to CRY. After my mastectomy 2 months ago, I felt like I needed a group to SAY same thing I was feeling. At any rate, I sure am glad this group exists. I've had so many questions I never asked or comments I could have shared. I'm very thankful for this group. I congratulate you for tweaking it some, and I trust you'll do WELL in your efforts. Blessings, Janstar47

      over 4 years ago
    • hikerchick's Avatar
      hikerchick

      True, like Janstar47 said, I was looking for a local group to join eyeball to eyeball while I was going through the thick of it all. That's how I found this blog. I thought I would find a lot of San Diego county women on it but it was quite new at that time and it just didn't have that many contributors yet. I really like the possibility of meeting someone in a similar situation and going for a good walk and talk together. Glad you list locations of members.

      over 4 years ago
    • Blepta's Avatar
      Blepta

      http://www.facingourrisk.org/ is wonderful for information about hereditary cancers.

      over 4 years ago

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