Provide feedback/advice about our site and campaigns?!

I am a privacy freak and not savy especially when it comes to the internet world. I have had my identity stolen, my credit card number stolen on two occasions, my healthcare provider was hacked, and my yahoo email account was breached. My ex has gone thru unspeakable measures to stalk and gain information about me and to date I have only told two trusted friends and my immediate family about my BC. Now with the latest on FB I am concerned about privacy issues. Unfortunately my email address is my full name. I would sure hate the whole world to know about my BC and treatment. Am I being paranoid?

This place and the people here became a lifeline for me when I became a member here. I began to feel as if I wasn’t alone anymore and felt more like I could deal with my fight against this disease. So, I just wanted to say that I agree the medical content should update, but instead of using medical terminology, it should be presented to the members in an easy to understand manner. It is bad enough that doctors use the medical terminology and in my experience, often do not explain it where I can understand it, so I have to go looking it up to try and get a better understanding of what they were trying to tell me.

I hope the moderators understand that for people like myself, I feel at times that when I hear or read about some new study about cancer, the people doing the research do not take into consideration that the people who are impacted by this disease are not all the same and therefore the research feels as if it has become biased and lumps everyone together to achieve their desired results. That kind of thinking can often lead to unintended issues down the line. Just because something may work for one person doesn't mean it will work for others. This is what I am beginning to feels is going on with these “proposed" changes.

Overall, this place is fine the way it is, but what I think most of the members are trying to convey is that it feels as if we are being not listened to when we express our opinions about the “proposed" changes.

No proposals to offer but praise to express my gratitude. This site and the amazing people saved my life in the early time when I was completely alone. Today it is still a source of continued updates on research and advancement, and a place to see what others are doing at this part of my journey. I try to give back to the newcomers but lately I am slacking. It brings back difficult times and I am at a crossroad where I am trying to move forward and not back. I give when I am able, though but no longer the mission it once was. I have formed a close alliance with several beautiful women and suspect they will be lifelong friends. I am forever indebted to BCO. Keep up the good work.

Dear Moderators,

I first want to thank you in general for this very excellent site, I have made friends here and found so much support.

I also want to thank you for the very excellent link on your home page, the link to the article on peripheral neuropathy, in particular Chemo-induced peripheral neuropathy. I have been suffering from motor, sensory and autonomic CIPN since 2014 and have had no real clear explanation on the whole thing from any doctor. I have wondered why my CIPN is different from other people that I know. Now I know the whys and wherefores, and perhaps I can explain why I am so much weaker than I was before. Thanks again,

Mary

Hello:

I noticed that the "active topics" section does not display all topics that have had recent activity and there is no way to easily see all of the new topics. It would be nice if there were.

I am quite backward and shy about posting on this site, I have struggled emotionally for the last two years since I was diagnosed but I really have to speak out and say that some of the proposed changes would definitely deter me from logging back on to the site. I have registered with a few FB groups in the past and other commercialised websites for BC but even as a silent member of the forums on this site, I have gained far more from than from any of the others, it's much more personal. There are many ladies on this site whom I have followed for months (I'm not a stalker honest lol) and they will never know just how much their posts have kept me going at times. Please don't make too many changes.