please stop minimizing my diagnosis

I had the "the good news is it's only DCIS" speech from my original, diagnosing, BS. I then had a second opinion with a breast surgeon at Memorial Sloan Kettering whose attitude strongly conveyed that my disease was a waste of her time and talent.  She said something along the lines of "you're so much better off than 90% of the people in the waiting room" - and while that may be true, aren't we all having surgeries and other nasty, horrible, fear-filled procedures?  She was incredibly flippant and dismissive, and had no patience for questions...

I ended up complaining about her through the proper channels and have recently been told she's leaving the practice. 

I don't know what role, if any, my complaint played - but I hope she comes to realize that she's dealing with human beings - confused, frightened, overwhelmed, human beings with cancer, ALL of us.  We deserve better.   

celisa,

Women who have DCIS do not require chemo and therefore do not have to deal with hair loss.

As I asked in response to one of your other posts, do you have permission from the moderators to post this request?  All research requests are supposed to go through the moderators.

Personally I get tired of being seen as a potential research guinea pig for students - that's not why we are on this board and those who are newly diagnosed have much better things to do than participate in some student's research study. I find it particularly offensive that you don't even understand enough about breast cancer that you post your request in the DCIS forum, where it is simply not relevant. 

Beesie,

The last thing I wanted to do was to upset you. I am very sorry about that. I understand and will not post again.

I don't think you are a "potential research guinea pig". I was diagnosed with cancer myself at the age of 27 and I respect people's privacy. I already had some positive responses to my post, which makes me believe that some women may be interested in my research.

Beesie, I wish you the best and, once again, I apologize for the inconvenience.

To Bessie -

 Women with multiple diagnoses or new cancers since the DCIS diagnosis can require Chemo - I'd happily partcipate with Celisa and I enjoy supporting any educational project any student is working on. None of us asked to become part of this group but I don't think anyone should be alienated from participating in it. 

This is an interesting post.  I do not have DCIS, I have IDC, but still early stage.  I have found that there are people with later stages of cancer than what I had will tell me that I had cancer lite.  The last I looked, it wasn't a contest.  Cancer sucks no matter how you slice it and while I am glad to be in the early detection bucket, the emotional and physical toll of cancer is significant and not to be diminished.  It isn't a contest!  We are all here because we have been diagnosed with cancer.  Someone who thinks my pain is any less important than theirs has bigger problems than just being diagnosed with cancer. 

I think maybe we are forgetting the reason we all use this forum!  For me, it's a place where I can vent, ask questions, compare treatments, etc.  I love the advice I receive and know that it is from someone just like me, who has already had the experience of what I am about to go through.  It helps me to ask my docs the right questions and about all my options I might not otherwise have known about.  I don't take anyone's word as the "Gospel".  There is no right or wrong.  It is what is is! 

Now, about the DCIS--My sister was diagnosed 2 weeks after me with DCIS.  She had a really hard time telling us(sisters and mother) because she felt guilty that she didn't have to go through what I was facing.  I was just relieved for her that it was caught early.  I don't understand why it is called stage 0.  If it is, as they say, "not cancer" than why do they remove it and radiate it.  It seems like there should be a better way of titling it.  For those of us on this bus, we understand the reality of DCIS.  For people who have not gotten on this bus, I think they are misinformed about the seriousness of this type of cancer.

It is absolutely outrageous that anyone would down play DCIS.  It shows a profound lack of comprehension about cancer. 

I must congratulate Sweatyspice on the actions she took regarding the unpleasant onc - what a disgraceful way to be treated. 

I think when any of us are originally diagnosed, the vast majority of us are just absolutely petrified and wouldn't know the difference between any types of beast  cancer  (with the exception of those who may have had reason to do depth researrch anyway).  Most of us are onto a very steep learning curve after DX and this and other Boards are the place where we slowly come to comprehend our personal situation. 

 I think it is a pity that Celisa didn't go through the Moderators with reference to her study - I have to say that as it was described in her post I felt like a guinea pig.  Had it come in the more usual fashion, I might have perceived it as a fairly interesting topic.    The Moderators would (I presume) also be able to do a bit of a check on her bona fides.

 Beesie makes a good point above - why ever would it make sense to downplay DCIS when - if it were found soon enough, so very many women could have the possibility of better outcomes?

It  wuld be a good idea if all of us took it upon ourselves to email into newspaper'  eitors to put them right on these matters, should we observe such an article.

Nancy, I understand that women other than those diagnosed with DCIS do come to this forum, but as described by Breastcancer.org, this is a forum for those "Just diagnosed, in treatment, or finished treatment for DCIS."   So when I post in this forum, I focus my comments on that audience.

As for my sources, I realize that what is or isn't a "reliable" source is subjective but I think that most would agree that the NCCN, NIH, ACS and Breastcancer.org are reliable sources.  When I get information from a source that I am less sure about, I usually try to find similar or supporting data from other sources; in those cases I provide the link from the source that is the easiest to understand.  In the end though it's up to everyone to decide what they believe; everyone is free to do their own research. I guess I'm not sure from your perspective what the response should be if someone asks a question about DCIS treatment. I try to answer and provide references and links. Do you suggest that I - and everyone here - just ignore the question?

To be honest I've been confounded by your response to my posts so I looked up your history of posts and discovered that you've criticized me before; that time too it seemed to come out of the blue.  You've also criticized some of the other women on the DCIS board, those who I believe, and I think most here would agree, are amongst the best informed and most helpful to women newly diagnosed with DCIS.  So I don't know what you have against me or what I've done to offend you, but at least I'm in good company!

Virginia, I agree that Celisa's research might be very interesting, but I think it would have been helpful if she'd done her homework on breast cancer, and the workings of this discussion board, before posting her request. I am always more comfortable if the moderators have checked out a research request, and in this case, the Chemo forum would certainly have been a more appropriate place for to place the request.

What's unfortunate is that this thread, which is an interesting and important one, has been taken off track.  Hopefully we can get back now to discussing the issue of a DCIS diagnosis and how that is addressed by doctors, our families and ourselves.

Dear Jules, I am so sorry you have had such a horrible time - it is a very upsetting thing to confront, and if it is any help at all, everyone goes through awful feelings of upset and panic.

There is a lot info to be found on this site but it takes a little while to learn how to navigate around.  If you haven't already, it is really worth while going through the factual pages which you can locate by going to the absolute top of this page and clicking on things like Diagnosis and treatment etc.

 I do hope you can sort out a more helpful  approach from the peoplke at your hospital; it does make all athe difference.

with best  wishes-

Thank you so much for the support London. I appreciate it.

Be well,

Jules

Hey everyone, and particularly Jules.

I gave quite a bit of thought about  the "easier"  (er, what dya mean?!!) diagnoses end of things.  I am not sure we get so much opf that thought here actualkly - cancer is cancer.  So, I happened to be looking up something for myself, and on the website for the National Institute for Clinical Excellence "NICE",  which is our British institute that decided what tratments etc can be used for cancer (actually, it is a much better site and set of info than I had anticiapted, it gives the thought processes as to why they have madfe certain decisions).

 Anyway, I ramble, the thing is it very clearly states that DCIS is Cancer.  Early Stage, but cancer.  There is no shilly shallying about, and I should damn well thinks so too.

 There have been some deeply annoying and innacurate articles in newspapers worldwide over the last few months about "over diagnosis".  Don't forget, articles get syndicated world wide so rubbish proliferates.  I urge you to complain to newspaper editors that print this crap.  I certainly do!

EArly diagnosis is a boon.  I would have been a lot better off if I had discovered my lump a year earlier.  By the way - this sounds daft, but a lumpo to me always meant a round thing.  Mine wasn't like that at all; I thought I'd pulled a pec muscle and it was inflamed.  You might just tell people about that, where approipriate.  I maybe have a very literal mind, but I just didn't picture it.

........

I don't understand Nancy's comments about Beesie's very rational posts across this Board. 

Speaking for myslef I am continually concerned  by the anti-treatment posts that are appearing in increasing quantitioes across many threads.  It is plain that some of them are multiple posts by the same people.  There is sadly quite a lot of bullying to be found too.

 This dopes not help newbies or anyone else.  I note that Celisa has now contacted the moderators, but interestingly although  he/she states that she has been a cancer patient, does not take the opportunity to share any of those details with us. I certainly won't be participating in the survey.  Others can do as they wish of course. 

I have two comments. Feel free to bash me when I am done posting.

A~IF a doctoral student/cancer patient does not realize that a diagnoses of pure DCIS is NEVER given chemo, I fear for the future of our species.

B~They are actually considering changing the name of DCIS to no longer include the word carcinoma.

May the bashing begin.

And if you all are PO'd over DCIS being minimized, try having ER/PR pos. IDC & being told how LUCKY you are. Better yet, only remove one breast & be told how illogical you are.

We each have our own journey, comparing my journey to anyone else's is like comparing salt & pepper. JMHO.

'WOW!!! If they take out the word carcinoma from DCIS then I never had cancer. DCIS then would only be a pre-cancer dx. It seems that once you've been dx with cancer that doctors and people look at you differently. Hey, it would be nice knowing what I had wasn't really cancer. To be honest, I have mixed feelings about this.

I had read after first being dx with DCIS that I was lucky that it was stage 0, and easily taken care of. The first time, after my dx with cancer, I struggled with the term stage 0. How can stage 0 be cancer? Cancer is serious! Stage 0 felt harmless, and for that reason I didn't take the first dx too seriously. To be honest, I treated it much like a pre-cancer dx. The same time next year I was dx with multifocal dcis, stage 0. The cancer I had was very aggressive, moving quickly throughout my ducts. It was harder to shake the second time, or consider it a non-cancer.

But, women who lose their breast, radiated, and take med's to prevent further cancer are paying a huge price for something that isn't yet cancer. Hmmmm...why is the medical establishment being so aggressive about something that is stage 0 or not carcinoma? It is or it isn't? 

The day I was diagnosed (I really absolutely wasn't expecting it, I thought I jsut had hormonally boobs and a sore Pec muscle......) I wouldn't have known the difference between DCIS and a rhino, or for that matter anything.  I just got told I have cancer.  My legs went from under me and I felt like somebody was repeatedly kicking me in my stomach, and I felt like that for a week.  I had trouble standing up straight and walking (and I am somewhat vain normally about my posture).  In subsequent appointments I discovered that I have a thing that is IDC.  And at that point I was looking everywhere on the iternet for info.  And I came here.

So like everybody else you sort of do a degree in cancer knowledge in about 4 weeks and are expected to comprehend what the hell is going on in your life.

Well, we all know it doesn't really work that way.

 Call me cynical, but if you change the name of DCIS to something not called cancer, then all of a sudden you have an enormous statistical drop in Cancer DX figures.   hmmmmmmm

Speaking for myself, I really dislike some of the people claiming to be students of this and that (how the hell do you know who or what they are) who claim also to have some connection with cancer (but never share the full details, or if they mention some, it doesn't really quite chime).  There was somebody wanting to use our experiences for a play a while ago.  What, you can't make the bloody effort to maybe contact a local support group and see if anyone would be willing to actually talk face to face?  cyber empathy, as long as you don't have to go through the awful experience of talking to a real human being in extremis.  This may explain why so much stuff on t.v and in books is rubbish.

We have people now doing college degrees whose chief learning curve has been to perfect the art of pasting info onto a page.

So I am not all that surprised if - living in a time of words meaning less and less, some government somewhere would find it convenient just to change the name of a disease.

That is certainly NOT HAPPENING here in the UK, and I would urge all of you to start campaiging by writing to newspapers, t.v. stations etc and I will certainly post every time it would be helpful.

 Going back to the way doctors express themselves :  remember : this is how they earn their living.  No one stood with a gun and said be a doctor.  This is a symbiotic relationship; they have jobs because they treat sick people.  Part of professionalism is knowing how to commit yourself, even when tired and hurried, to doing the best you can to help someone hear the words you have to say.  Doctors are virtually unsackable and they earn ok.  They are not unique in the world of professionals in having to work hard.  Obviously this kind of behavious is international - it happens here too, so this is to do with human nature I think, not where you are domiciled..

I have had some very unkind things said to me and have heard the same from fellow patients in the UK.  It is very wearisome having to have rows with the people that are supposed to be helping you.

........

 It might be after a while and when you know a bit more about the disease that if you happen to have what looks like a very early stage situation, then you may feel a bit better.  But then, none of us know where the hell this goes.  And there is always someone a few steps further down the road than me, so I think we are all passengers on a train trip together, whatever the stage.

I find it difficult trying to post info about lumpectomy as opposed to MX here, as one quite often gets agressive reponses about what tx I should have had.  So I can't comfortably always share info that I would like to with other people on here.   This is not helpful.

 I really do think that the moderator(s) could from time to time put out reminders about being sensitive to each other - that is not censorship, it is just a kindly reminder.  We all make mistakes when biffing off a quick post and don't always get it quite right.

For my own part, I am hugely grateful to the women on here who have taken the time to supply me with links to useful reports and so forth, and also just those little one line post of support when one is feeling down, or indeed up!

 Lets all keep trying to help eachother as best we can, but always with an eye to their feelings -

 all the best everyone

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