Just curious about why don't people post their diagnoses.

I would like to know why they don't....

I agree.  I see a lot of inappropriate or just plain wrong advice being given out because people assume something about a diagnosis (often assuming that it is similar to theirs) and therefore suggest tests or treatments that are not required for the diagnosis of the person asking for input or advice.  An Oncotype test for someone who is HER2+ and node positive, for example, or tabling the option of hormone therapy for someone who is triple negative. People get led down the wrong path and it can be very difficult to redirect them once they have something in their mind. 

But I find an even bigger frustration is when people post their diagnosis but state it incorrectly.  There are a lot of "DCIS Stage IIs" (or Stage I or III etc.) out there.  Or DCIS Stage 0s who have positive nodes or had chemo (which means that the diagnosis most certainly was not DCIS Stage 0).

I can't tell you how many times I've had to explain to scared newbies in the DCIS forum that they shouldn't believe everything they read.  They see someone else with "DCIS" who's had chemo and they worry that they might need chemo too, or they assume that their doctor was wrong when he said that chemo is never required for DCIS.  Or they see someone with "DCIS" who is Stage II and don't understand why their DCIS is Stage 0 or worry that they might be Stage II.  Or they see someone with "DCIS" who has positive nodes and are upset that they were told that they didn't need to have their nodes checked when they had a lumpectomy.  And scariest of all is when they see someone who had "DCIS" and who progressed to Stage IV (yes, it can happen if someone with DCIS has an invasive recurrence, but in almost all of the cases I've seen on this board, it turns out that the original diagnosis wasn't DCIS at all and often was actually quite an aggressive or later stage cancer).

I wish that the profile system didn't allow these incorrect diagnoses to be entered.

I don't post my diagnosis because I have very good drs. I rely on and don't really want any help with my treatment from outside sources - I love to get thoughts, prayers and good wishes though - we're all different I guess.

Sandy, whether you include your diagnosis line or not, I would hope that no one would offer you advice if you didn't ask for it.  But I know, it happens!

Your comment highlighted another concern I have, which is that too often people come here asking for medical advice, or asking "should I do X or should I do Y?" and people actually give them a direct answer. It's one thing to say "here are the reasons why you might want to consider X, and here are the reasons why you might want to consider Y", but it's very different to say "I think you should do Y".   It's also very different to say "here is a test and some things about the treatment recommendation that you might want to ask your doctor about" vs. saying "you should tell your doctor that you want test 123 and you want to do treatment Y". 

I think the discussion here can be helpful in educating people about their diagnosis and the treatment and testing options, including what certain things mean and why certain tests and procedures may be done or recommended.  We're also very good at highlighting risks or issues with various treatments.  But my expectation is that everything is taken back to the doctor as questions or for discussion.  In the end, I would hope that everyone trusts and relies on their doctors and if they don't, they should find doctors who they do trust and can rely on. 

I think we offer way too much medical advice on this board

A "non-lister" weighing in...

I've been on the boards and checked in from time to time since 2003-2004.  Back then I wasn't really tech savvy (still not really!) and wasn't sure how much to share. Not a huge amount of posts from me.  I've posted when I've needed to vent or provide support but still maintain this place as a haven where I can get support or see if others like me are having some of the same issues.

For some people it's probably a privacy thing.  There are things I feel comfortable saying here- to those who get it, but not some people I know and love dearly in person.  They just haven't had to wear the shoes so to speak.  

I've gone on to be diagnosed again in 2011 and honestly there is too damn much to put down there now.  

That's my situation and maybe it sheds some light on other people's choices as well.

Take care & best wishes to you all.

Beesie - as usual you've "hit the nail on the head"!  The last line of your post is right on target.

S.

"I didn't want anyone making such an important decision as their treatment based on what I decided for myself."

Selena, I couldn't agree more! Your comment about getting PMs asking for medical advice highlights one of my concerns too.  I get a lot of those types of PMs and while I want to be responsive, I am careful to reply the same way I would if I was posting publicly. I do sometimes get into a bit more detail about my decision-making process or the factors that drove me to my decisions, but I try to frame those factors as being unique to my situation or my way of thinking ("this is what was significant to me but it might not be important to you or someone else facing the same decision").  Often, if someone has posted their questions on the board in addition to sending me the PM, I'll let them know that I will respond on the board rather than in the PM. And if someone hasn't posted their questions on the board, I will urge them to post so that they get the input from many people, and not just me.

I don't want my advice or my opinion to be the only advice or opinion that someone gets. And I prefer that what I say is out in public so that others can read it and offer their opinions.  

I always get concerned when I see a post with the question, "Should I have a lumpectomy or a MX?" or "Should I take hormone therapy?" (or anything of that ilk) and then see a post with the reply "I've sent you a PM". I'm always tempted to respond with a post that says "Why the PM?  What are you advising in a PM that you don't want to say on the public board?".  My sense when I see those posts is that someone wants to have a private audience so that they can influence this person's decision.  If that's true, that's terrible and just so wrong.

It's completely different of course to use PMs to offer emotional support or advice on how to get through treatment; from that standpoint, there are things that I'll share in PMs that I won't write on the board, either because they are highly personal or because they provide too much identifiable information.  

As for research, when I first arrived on the board there were a few people who hassled me about all the research and webpage links that I include in my posts.  In those days, not many people did that.  But I continued to include links, and still do.  When I present research or medical information, I try to use quotes from the study or medical site itself, and I try to always include a link so that anyone can read it for themselves and not rely solely on my interpretation.

yorkiemom, sorry for taking this down a different path. Your first words "I've been debating about whether to post this for awhile" struck a cord and I'm getting out some of the things that I've debated posting about for a while.  Or maybe it's more accurate to say that I'm getting out some of the things that I've never had the nerve to post about before!

I've learned that everything I think does not need to be said. 

And if I am responding to someone seeking medical advice in their post, my answer usually includes something like "None of us here are medical doctors. You need to see a doctor, and express these concerns in order to get the diagnosis and any treatment you may need."

Even though there is a comfort in knowing that someone has the same symptoms or dx as you, even within those parameters, we are all so different. I can't imagine making suggestions for someone else based on what I did. I can only share my own experience, and hope that the OP will take it in the spirit in which it was given.

But maybe that's assuming too much?

I do not define myself as a 'Cancer Survivor'   - I AM ME! - but the fact is I was DXd with IBC in Aug '09 and as far as I know today, I'm still NED.  (I have a bone scan next week wo who knows  though but my PA and I think it's just more arthritis showing up.)  19 yrs ago I was Dx'd as SAD (Seasonal Effective Disorder) - that does not 'define' me but is a fact of life that I deal with AND makes me who I am.

I try hard to make sure that I don't tell anyone 'what they should do" (except to say "See a Dr" at times - if someone comes here and asks questions initially then a DR is the one with answers).  I do say what I have experienced and what worked for me - but not that's the only answer for all.  We are all so DIFFERENT!

There are a lot of Sections that I don't got to because I have no history/experience in/with.  I do not like others coming to Sections that they have no history/experience with and 'spouting' all they've read.  Those who have not had experience/dealt with coming and asking questions is FANTASTIC - that's how we learn!. 

I do sometimes tend to ignore those who have been 'around' for a while that don't show any 'info'.  How am I supposed to know rather or not anything they're posting is relivant?  I do understand the idea of 'privacy' BUT this is the internet after all.

I do not understand why some do not post DX, ect.    I do understand early on - there's little to no information to post.  BUT for us to post replies that are pertinent to the person and 'where' they are.  It also 'helps' us to put into perspective posts to us as to rather or not the person has actual experience in the question area.  I can't tell someone who is IDC Stage I what it's like to be that just as they can't tell me about being IBC Stage III.

I guess what I'm trying to say is - you can get better replies to your exact questions IF there is info available.   If the person you reply to can see that you do actually have 'been there'.  There is so much, in so many areas, we can learn from each other - a little info can go a long way in how we word what we want to say.  Just my thoights.

I have no idea why some might choose to not post their diagnose, but I respect their wish not to.  I posted mine as soon as I had all the information in hand.  I personally cannot understand why someone would come on board a breast cancer site and not post their stats.  Que sera, sera.

cdelv66, I saw your question about multi-focal DCIS in your post in the DCIS forum, and posted a reply there. 

I don't know if a matter of comfort, but rather of matter of preference, as witnessed by some of the reasons for not posturing dx, that others have given.