| Joined: Nov 2008 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2008 Posts: 51 | Thanks...my sensitivities are running a little high lately....
Cg to partner, Stage IV SCC of upper left mandible, met to lymph nodes. Dx 4/1/2008. Inopperable, 3 rounds of chemo followed by 2 rounds of chemo with 33 tx of radiation. Growth started again immediatly following. She crossed over November 30, 2008.
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Brian could definitely be a little more gentle in his responses! Please remember Brian there are some very fragile new people on this board who are in a very delicate emotional state. A simple non angered explanation would have sufficed really.
Respectfully,
Kate
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Ouch. I don't think the suggestion was meant as a critique. This board is a valuable resource for everyone but asking what if should never be discouraged. No harm in asking.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 61 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 61 | Jeez - for cancer people you guys have a thin skin. It is only that with over 20 million hits per month on the site, 6k posters over the years on these boards, 85,000 postings (not including the thousands which have been pruned over the years), and the hundreds of emails that I get a month, you have to understand that most of this has come up before.
I was NOT angered by it misskate. (Never one to give me much slack about my manner, but greatly valued as a contributor.) I just wish once in awhile someone would search the message board database before trying to reinvent the wheel. I get that it was just suggested in a positive tone, and was not a criticism of the site. This site is far from perfect and there is much more I wish we could afford to do to make it so. And I'm sorry if my late night post sounded harsh, that was not my intent.
The chat room question has been discussed here several times and explanations for not having one have been offered each time. This is essentially what Gary said. If anyone wants to start a chat room on the web - which you can do for free, I will certainly support you and refer to it. As a side note, there are no protections in a chat room that you won't get erroneous information since no-one else ever reads your conversation once it has been closed for the session. OCF has always had people that monitor these boards, and if something is clearly in error, posted a correction. We are really lucky to have doctors here, and silent monitors, as well has highly knowledgeable people that have been through it all in spades, to see that what is suggested to new people does no harm. In the end that is the most important reason not to have them.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Brian,
Perhaps this is a topic for the �Frequently Asked Questions� forum and/or the FAQ �button� on the toolbar? I�ve done some searches on the website and often will get so many hits and reading through them all is time consuming especially for someone looking for a quick answer to a �simple question� or suggestion.
I agree your explanation makes sense regarding the chat room. There are probably other topics that could be added here also � like the suggestion for the phone line, and an acronym list. The site has a lot of valuable information, but for someone new it takes a while to know where to look for it.
This website in my opinion is the best source of information on oral cancer. I just wish I had found it earlier in my journey.
Thanks!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 61 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 61 | I will have Chester add it to that section when he works on the site next month. We're spent out with him for this month. But to be honest that is one of the least hit pages in the whole site. It is just human nature. You have a question/problem you want an answer from a real person right now. Posting it is was easier than working through 2000 plus pages of web site, no matter how efficient the search system. And your right - both the site system and the board search system find tons of things. There are tons of references to any given topic. The ask approach is way easier to most. I do it as well. It's easier to call a researcher I know and ask, than to search for several hours on MedLine or somewhere else.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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