GRACE Discussion Forums
One of the main and most active features here at GRACE are our member discussion forums. We now have a unique forum with a wide range of topics, for each of our Cancer Info subject areas.
Before you post or when looking for specific information that might have already been discussed in our forums, you can use the Google™ Custom Search above, which will return results from all posts and forum topics & replies in all subject areas, and you can even choose the “Archived Forums” filter button to show only results from our previous forums.
If you have a question or comment on a subject that isn’t already listed as a discussion thread item, feel free to start one within the most relevant subject area. You can also just click the “Q&A, Ask Us” link in the right sidebar or from the main green navigation menu above, which will allow you to create a forum topic with your question for our faculty doctors, which we’ll try to address as quickly as possible.
A range of aggregate Recent Forum Activity pages are also available.
|1.||You may want to do a search for some of the key terms in your question to see whether you can get the answer without asking it again.|
|2.||Though we want a good explanation of what’s happening, please be brief in explaining the relevant history. Relaying amusing stories, telling a joke with a set-up, etc., are all great because people can opt out if they want to, but if we need to read a medical preamble to address your question, try to be as concise as you can.|
|3.||Please don’t ask what you “should” do. We can provide general information, and we’re delighted to do it, but we can’t provide medical advice to people who aren’t our patients. We could get into legal trouble, and we don’t want to try to replace the local team that has access to more relevant details, such as scans, labs, and the ability to evaluate a person directly. “Should” is the one word on the forum that is a trigger that we’re crossing a line.|
|4.||Please don’t ask whether a problem is worrisome or not, or especially if it’s a potential emergency. If you’re concerned, it’s worth communicating with the local medical people. It’s medico-legal suicide to declare online that a symptom isn’t worrisome and then miss something, and of course without having access to the right details, that’s all too possible.|
We want brief telegraphic highlights of treatments given and how they worked, a quick summary of staging and pathology, but we ask that people notcopy and paste or upload pathology reports, radiology reports, etc. It’s problematic from a confidentiality standpoint, and beyond that, we can’t practically get immersed in the extreme details of everyone’s care. We’re trying to serve a broad population by providing information that can be useful to many people. The more specific the questions get to an extremely unique situation, the more time we are asked to spend to help just a single person. That’s really more in the realm of a person’s own medical team
Related to this, we can answer short questions about terminology of a word or phrase, but we can’t provide very time-consuming, detailed, line by line translations of reports.
|6.||Because we’re trying to offer assistance to many people, we ask that people not provide a long list of questions. We can’t spend 30 minutes answering a post with 8 exhaustive questions. Better to prioritize one or two and come back with additional questions over time. We need to take turns here.|
|7.||More directed questions are much easier for us to address than very open ones, like “what should I ask?”, “what might happen?”, or “can you tell me all possible side effects of X?” It’s hard to be exhaustive without spending more time than we can realistically spend while still trying to serve a large audience.|
|8.||A style point pet peeve with a notable exception: Please refrain from posting in ALL CAPS and with multiple exclamation points (exception: congratulating someone on good results, as in “YAHOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!” — sound like anyone you know?). Being loudly positive is nice, but being loudly anxious, while truly understandable, is very hard to deal with: everyone here is dealing with serious issues, and screaming “PLEASE HELP!!!!!!!!!!!!!!!!!!!!” conveys panic that gets in the way of our effort to provide assistance and support.|
|9.||We are very happy to keep the forums conversational. It’s OK to veer off topic with more lighthearted, personal discussion.|
|10.||If we don’t give an answer, we almost certainly aren’t ignoring the question. First, having the assistance of the moderators is extremely helpful, and they can often point to some of the same answers that the faculty might provide. Also, the busier the discussion forum gets, the easier it is to have a perfectly good question lost in the scrum. If you see a question that looks like it’s been languishing (more than ~24 hours, especially if you can see we’ve been answering other questions recently), it probably slipped under the pile. Feel free to post a brief reply, just a “bump” to put it back on the top of the list of recent comments, which is a good way to get it noticed again. Or if we missed your question, feel free to ask it again.|