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To post or not to post?
Welcome!
If you are reading this, you may be trying to decide to post or not post.
Guess what? Either way works!
I am just a user/participant on this site and I have been posting since my original bladder cancer diagnosis in 2006. As of this posting it is 4 years and 7 months ago.
If you can find what you need by using the search (and Advanced Search) features, then you are getting good information from people who have “been there–done that”.
On the other hand, the folks here tend to be pretty nice and fairly informative.
If you (or a loved one) have been recently diagnosed with bladder cancer, you are not alone and there are a lot of folks here that are happy to help with information and our experiences.
We tend not to bite anybody’s head off, unless of course you have bladder cancer and have decided you are going to treat yourself by going on an all broccoli diet, or by taking some vitamin, or by dancing naked under some crystals you hung over a doorway! Then we may be a bit aggressive.
No question asked is a stupid question! The quest for knowledge and understanding is to be applauded and we (the other users here) want you to have as much information as possible so that you can get the best treatment for yourself and put bladder cancer behind you as quickly as possible.
According to Cynthia (head of the ABLCS) we get about 1000 people signing on as “Guest” and just browsing for each person who visits here and actually posts something.
You don’t have to post your picture, use your name, or anything else that would identify you if you prefer to remain completely anonymous. The things we would ask (because they make a difference) are your sex and your general location. Location helps folks to recommend the top urologists and hospitals that may be near you who have lots of experience with bladder cancer. Your sex matters because, depending on your situation, the options available to you which have the best outcomes and fewer complications are different for men and women.
Doesn’t matter what your religion is or if you don’t have a religion, believe or not believe in God (or Gods). Race doesn’t matter, nationality doesn’t matter, political affiliation doesn’t matter. While some races get bladder cancer at a higher rate than others, the treatment options are all the same.
Please don’t let your questions go unanswered. We may not always know the answer, but there are many here who actually help point you to research which may help answer your bladder cancer related questions.
If you find your answers and are happy with them just by searching without posting, then that’s great. If not, please post.
Everybody who posts here came here at one point and had to decide whether to post or not. Nobody comes here with all the answers (or even all the questions they should be asking). We don’t expect you to either.
So the answer to the question posed is: Do what works for you! If you are a little nervous about posting, go ahead and give it a try. If it works out for you, great. Give a little time for responses. We’re not the 911 emergency line (number for U.S. folks since it is different in other countries) so we typically are not responding in seconds or minutes. However, most questions get responses in time.
We can’t diagnose your situation but we can help you understand it and we can help you with questions that you may want to ask your doctor.
To the thousands who read without posting: Thanks for reading. We hope what we’ve posted has been helpful to you. At any time, feel free to just get crazy and ask a question or two now and again.
To those who monitored from the sidelines for a while but now do post here: Feel free to reply to this message with why you didn’t post for a while and what value you got out of doing so.
My feeling is that people get more than questions answered on this site. I think for some, it can be a bit cathartic to just get your situation written down somewhere instead of all bottled up inside.
Best to ALL!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV. -
8 Replies
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I was a bystander for about two days after I was Dx’d, then I had to jump right in to have my 100’s of questions answered and for ALL the wonderful advice , knowledge and most of all the sense of humor.
It helped me see life can go on and we can laugh at the funny things that happen on this journey.
George and Mike should have their own comedy hour, this site brings knowledge and smiles, thank you.Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07 -
Welcome! You have a very nice looking family. Glad Mark (Upnorth) was able to talk you through adding your picture. Best wishes to you with your surgery.
Are you interested in CITRIX Get our self paced testking ccna and Pass4sure 200-120 packages to pass your wikipedia without any difficulty in Yale University lsat. -
I have to admit to having been a “lurker” for a while before registering and posting – a couple of reasons – firstly was that I had never posted anything on internet and was not sure how to go about it, but I also felt that everyone else was so jenned up on the subject of blc that I would seem a bit of an idiot. Of course I soon realised that the fact that I was on the first rung of the learning ladder mattered not one iota – everyone on here had been in that position at some stage in their illness. I had frightened myself to death reading some of the information on other websites, but that was before my diagnosis had been confirmed, and this site gave me the most information and alternatives and “straight from the horse·s mouth”.
I think it is a positive thing that we are getting so many guests on here(even taking into account that a certain proportion of lookers have ulterior motives in coming on here .;selling crystals, books that will cure you, and magic potions etc), but for sure there are people who will go away with good advice, and armed with the knowledge they need. Some of them will come back later,as I did and make contact, or will pass on the information they have found in time to help someone else – every hit we get in theory means that one more person is AWARE of bladder cancer
and that surely must be a good thing as I believe it is one of
our main aims.
Diane -
There goes any semblence of professionalism we may have had. Now NO ONE will post.
But I have to say;
I LOVE IT!
George :laugh: :laugh: :laugh: :laugh:
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size] -
ummmmmmm i don’t know Cynthia. My friend bet me $20 that i would not run naked through the annual Flower Show at the Conservatory and I won Best Dried Arrangement!
pat -
Pat if you will forward me pictures of yourself dancing naked under your crystals we will auctions them off. They do naked calenders for other organizations as a fund raiser this might work for us………..
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
You just keep cracking me up Pat!!! :woohoo:
Thanks for that!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV. -
You may however, eat broccoli, take vitamins, and dance naked under crystals over your doorway IF in addition to getting top notch referrals to a major cancer or urological center or top/uro surgeon who deals with tons of bladder cancer.
I’m not taking down my crystals Mike! :laugh:
pat
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