If I read one more post saying DCIS isn't cancer

Some time ago, Coolbreeze posted here in the DCIS forum, in the "Is DCIS Cancer?" thread. She said that if she'd been diagnosed with DCIS, she'd have chosen "watchful waiting". When several of us challenged her on this, saying that until she's in this situation, she really doesn't know what she would do and questioning whether she'd make that choice if she was diagnosed with a large mass of high grade DCIS, she didn't respond. I guess she now prefers to spout her opinions about DCIS in her own blog, where she's less likely to be challenged.

I don't understand the mindset of someone who puts down others and says things that may be hurtful to others, on a subject that has nothing to do with them personally. That's what Coolbreeze seems to be doing, both in what she's blogged about Martina Navratilova and in what she's posted in the DCIS forum. Coolbreeze is entitled to her opinion about DCIS, but as someone who doesn't have DCIS, why would anyone care what her opinion is? And why does she feel that it's important for her to state her opinion publicly? I don't get it.

As for what she said in her blog, I'm of mixed mind on this. A lot of what she says about DCIS is correct. It's true that DCIS isn't life-threatening and has a nearly 100% cure rate. But there are a couple of really important points about DCIS that Coolbreeze chooses to ignore or simply doesn't understand. First, as 3monstrmama said, Coolbreeze fails to appreciate that DCIS is not a homogeneous disease. Some DCIS is low risk and some DCIS is high risk. Those who have a small, single focus of low grade DCIS likely have a different risk than those who have large areas and/or multi-focal high grade DCIS. I actually agree that it might make sense to take the word "cancer" out of DCIS - but only for some types of DCIS. When medical science is able to determine, based on a comprehensive understanding of the clinical, pathologic, and biologic factors associated with DCIS, which cases of DCIS can be managed with less intervention and which cases require immediate intervention due to the high risk of invasive cancer, then it might be appropriate to reclassify only those non-threatening forms of DCIS as non-cancers. But until then, a decision to reclassify and rename DCIS as a pre-cancer is certain to result in the under-treatment of some cases of high risk DCIS, and this in turn will lead to more deaths. So retaining the word "cancer" in the name and definition of DCIS is not important just so that women with DCIS can feel okay about their treatment decisions (as Coolbreeze condescendingly speculates). It is important because if some cases of DCIS are not adequately treated, if a "watchful waiting" approach is taken in the wrong cases, DCIS can and will become deadly, just like any other breast cancer.

The second point that Coolbreeze misses in her blog is the fact that, as ladyod points out, we never know whether a diagnosis is pure DCIS until after the entire area with cancer cells is removed. Only then can the pathologist tell us whether all the cancer cells were pre-invasive or whether some were invasive. I had 7+cm of DCIS cancer and 1mm of invasive cancer. Just that 1mm of invasive cancer gave me a 10% chance of having nodal involvement (i.e. moving up to at least Stage IIA). The fact is that in 15% - 20% of cases where DCIS is initially diagnosed via a needle biopsy, the final diagnosis is Stage I or higher. So how do we know when "watchful waiting" is appropriate, after a needle biopsy diagnosis of DCIS? A biopsy is not all telling, nor is a mammogram, an ultrasound or an MRI. Until the suspicious cells are all removed and analysed under a microscope, no one can know with certainty whether a diagnosis is DCIS or invasive cancer.

And that gets me back to Martina Navratilova's situation. In the interview I saw, she explained that when first diagnosed, but before surgery, there was discussion about possibly needing chemo. Clearly there was a sense, from her films and pathology, that her cancer might be more advanced. It took surgery and an analysis of the affected breast tissue to determine that the diagnosis was DCIS. She talked about her relief in discovering this, and her good fortune that her cancer was still pre-invasive, especially considering that she missed 4 years of mammos. In the interview I saw, it was perfectly clear that Martina was diagnosed with pre-invasive breast cancer - she wasn't trying to hide this fact but instead was explaining it. I think she handled it perfectly. As for Coolbreeze, she should stop blogging about things that don't affect her and that she doesn't fully understand. Or more succiently (I know, it's a bit late for me to be succient!), she should BUTT OUT.

I agree, well said Ladyod. I can relate to not knowing what exactly I was dealing with until the surgery and yes the full fear of a cancer that could kill me certainly felt very real and still does even though they say they got it all and whether having a double mastectomy was overkill or not for my peace of mind, my sanity, my ability to tell and reassure my children I did everything possible to make sure I will be around for you all is what ultimately made my decision. If my doctors had told me this is definately DCIS and it will never hurt you or grow outside of the ducts then that would have been different. I certainly wasn't told that. I was told that until surgery they usually can't tell exactly how widespread the DCIS is or whether there are microinvasions. Yes mine was grade 3 along with the LCIS diagnosis which my doctor said complicates everything.

Do I regret losing my breasts - yes! Did I really think I had a choice? For me, no. I have other health issues and even the idea of more mammograms or the horrendous biopsies were more than I could take both mentally and physically.I know I would be totally full of fear if I hadn't done both, other people it might not be the right decision for them. But no one should say what another person should do or feel or how they deal with it all. It is so very personal and I also agree with ladyod - most of the time I certainly don't know what I'm feeling and when I do think I know then it changes. 

I am not in a position to say this but I would hope that if I had a high stage cancer that to those who had stage 0 or 1, I would hope I'd tell them thank goodness you stopped it from getting further. As it is I tell my friends to make sure and get tested cause I don't want any of them to go through what I have and certainly don't want anyone to have an ever harder time. I know sometimes it isn't possible to catch cancers and they spread and it is horrible and sad but if it is possible to catch and stop I don't anyone wouldn't agree that it is best to do it.

Just to add my voice since sweatyspice and Beesie (with her excellent post) lured me into reading this Coolbreeze's ridiculous blog. What is this kind of trashing and arrogant writing on that blog anyway? ("People are very protective of the dangerousness of their disease..." etc).

well, since we are sounding off I really have a problem with the way the press continually handles this (as well as many of the research papers!).. the comments like "women are choosing bi-lateral mastectomy because of anxiety".  I don't feel I had a choice based on the doctor's fear and the continual calls from the doc's I had (my bs, my family practioner, rad. oncolg)!  I intended to remove the lession and then do "watchful waiting" but they would have no part of that and when their needling didn't produce the results they wanted (me selecting other than watchful waiting) they pulled out the big guns and scared the crap out of me!  I came to the table a well educated, thoughtful, careful and grounded individual -- I went away a nervous nilly with their interpretations of research (only later did I find out they had skewed the facts - which normally that would be the first thing I would think of - all research can be manipulated!) and their opinions of "if it were my wife or mother" I would - then pick the field - rad. oncologist wanted to blast the little sucker, bs wanted to cut "let's take care of them both in one surgery" etc..  It is time for the doc's to take responsibility for their patients and be reminded to "do no harm first".  Stop blaming women for being emotional when you are pulling all the triggers (doc's)..  The name has been changed to protect "who"???  The name should remain the same and the doctor's should get properly educated to help inform women better.   IMMHO!

Maybe I missed something here as I didn't read anything on this thread written by Coolbreeze. Ladies, I am not sure who she is, but I've said some pretty stupid things on this board that I wish I could take back. In the beginning I too challenged the whole dcis dx feeling it was nothing more than pre-cancer. I thought if dcis is noninvasive than why worry and I didn't worry until one year later when I was dx again with high grade dcis. I learned so much from this board of ladies, and from Deirdre, and Beesie, who are long standing advocates for those who struggle with their dx.

 If dcis wasn't cancer, you could still give blood, and apply for health and life insurance, which is huge!  However, DCIS is cancer cells that has the potential of becoming invasive and life threatening.

Deirdre - I can't blame my docs for not knowing more about DCIS.  While much is known, much is unknown.  I am confident that my docs knew as much as they reasonably could.  I am also confident that I knew as much about DCIS as a layperson possibly could before I agreed to a treatment plan.  I would not say I felt empowered, rather that I understood the choices I was dealing with and the reasons behind those choices.

You claim that your Drs were uneducated about DCIS, did not do their homework, and "led you down the garden path."  What happened?  If that's true, it sounds like malpractice and you should be suing them.    I know you had a BMX.  Do you now feel it was an improper recommendation, and if so, why?

Coolbreeze is the screen name of a "member" of this site. She also has a personal blog about her life with breast cancer, the link is (or was) in her siggy.  She may not have posted her thoughts about DCIS in this particular thread, but this is not the first or only thread on the topic and Coolbreeze has posted in at least one of those earlier ones.  

PS - Too often I read (on research papers as well as by mainstream journalists) that it is women that have made the incorrect decision of a mastectomy for DCIS because of their anxiety - my point is that most of those women are doing so on the advise of their doctors and THAT is what needs to be addressed.  If doctors are making such recommendations for DCIS they need to be very well educated on the BEST treatments for DCIS.  Deirdre

I have just been diagnosed with DCIS. Everything I have read to date is what you say - pre-cancer. Everything also talks about a lumpectomy or masectomy. To me a masectomy takes place when one really does have breast cancer. When there are multi calcifications, then I have read that they prefer a masectomy - I know that my upcoming OP will take at least 6 cm from my breast and after asking my doctor, she could not ensure that a masectomy would not be the end result. This info came after a lot of asking and asking again. I guess that we have to ask and ask again and ensure that they do not take the route, without your allowance and understanding, to have a total masectomy.

My experience was a little different:  I chose a BMX because of the fear.  Fear of recurrence which can come back invasive.  After my surgery, it was discovered there is no way I could have had clean margins from a lumpectomy, so thankfully I didn't have to have several procedures.  The other breast had atypical hyperplasia which can turn into DCIS.  I am very glad that I chose BMX.  But that is just me...I am a worry wart and the emotional has been more difficult than the physical.  I am also an eye doctor and I can tell you that not all doctors practice the same: their personalities play into how they choose to recommend treatments.  Some doctors are conservative and will choose to treat diseases more aggressively.   Then there are doctors who are more relaxed and choose to watch and see.  For me, I needed a conservative doctor.  If I had to watch and see, I would have been a basket case!  I am sorry that some of you have had problems with your docs.     Good Luck to all of you!

To the discussion above,  I do feel that in some cases, those who have low risk DCIS do over-treat by having a bilateral mastectomy, but I don't think we can say that it's solely the fault of our doctors or that it's all the fault of the patients.  It can go either way.  In some cases doctors are uneducated about DCIS and push (or "encourage") their patients to have bilaterals, while in other cases it's the anxiety of the patient that leads to that decision. And of course, there are many cases where the decision to have a bilateral is well-thought out and carefully considered - and in those cases, if it's right for the woman who is having the bilateral, then it's the right decision.  Too often, "over-treatment" is judged to be any treatment that is not medically required.  To me, treatment decisions should consider the medical and emotional and pyschological needs of the patient.  So just because a bilateral might not be medically necessary does not mean that it's not necessary, if it's the best way for the patient to deal with her diagnosis, over both the short and long term.

Having said that, I think this study is interesting:  http://www.medicalnewstoday.com/articles/183604.php   It's a small study - only 27 women - but of these 27 women who all wanted to have prophylactic mastectomies (in addition to a necessary mastectomy on the cancer side), after a 12 month "cooling off" period, 23 of the women "were pleased to have had the opportunity to rethink and chose not to have prophylactic surgery".   These were not specifically women with DCIS although there may have been some women with DCIS in the group.  I think this study supports the argument that in some cases, anxiety and a lack of understanding of one's real risk does lead to over-treatment. I think this is most likely to be true for those who have low risk DCIS.  That's why I think it might be a good idea to divide DCIS into two different diseases, one that is truly a low risk pre-cancer (more like ADH), and one that is a high risk pre-invasive cancer (truly "ductal carcinoma in situ").    

But, as I said in my earlier post, at this point in time, with the knowledge that we have about DCIS (or lack of knowledge, more to the point), it is premature to do something like this because we're not yet in a position where we can properly separate the low risk cases of DCIS from the high risk cases of DCIS.  We know that small amounts of low grade DCIS likely are lower risk, but there seems to be a consensus that there are other factors, as yet undiscovered, that also play into the risk level.  So for now, I think we need to deal with the anxiety of a DCIS diagnosis just as Deirdre said, by ensuring that doctors who are making recommendations on the treatment of DCIS are very well educated, understand the best treatment options for each type of DCIS diagnosis, and communicate this information, along with the most accurate risk information possible, to their patients.

Well, that'll never happen!

Deirdre, I agree with you.  My DCIS was more than one grade and I know I've read on this board about women who've had fairly significant changes in their diagnosis based on a rereading of their slides at a different lab.  

I think there is much more to determining the risk level of DCIS than just the grade.  So I don't think dividing DCIS into one diagnosis that is a non-cancer and another diagnosis that is Stage 0 cancer should be done on the basis of grade, or any of the factors that we know about now.  I have no doubt that there are other biological factors that are probably as important as grade in determining the risk level of DCIS - and the problem is that we don't know yet what these factors are.  Until we do, I think it's premature to do anything like this.  And it's certainly premature to take the word "cancer" out of the definition of all cases of DCIS!

That's OK redsox, at least for me (regarding the reference), that information is familiar to me as I have a copy of the transcript around somewhere and perhaps that is where the idea was planted!  Thanks!

Beasie, yes there must be other catalyst to produce invasive cancer, but they (medical community) just haven't found that (or those) missing link(s) yet..  I'm with you about not changing the name - DCIS will IMO ultimately be the identified as a source of invasive cancer but we just can't show that yet.. Given that sometimes I do wonder why I wouldn't approach it (DCIS) with the same viger that my doc's would.. I guess there is just too much of the picture in the shade yet - if you know what I mean...  Take care!  Deirdre

Graysean:  I hope that what we are discussing doesn't upset you!  That's certainly never my intent.. And good for you for asking for a review of your biopsy!  I'm glad that some women feel their doc's are really good, as I said it gives me hope!  If you have any concerns at all about how you will feel giving up your other breast, may I again advise that you add a therapist to your list of specialists!  It is so very important that you hear your own voice clearly at this point in your life.. if you feel strongly that you have chosen the right course - well then you go girl <grin>...  I hope everything works out well for you and that you are very happy with the reconstruction!!!  Best, Deirdre

I don't know who posted today in Coolbreeze's blog but whoever you are (and I'm assuming it's someone from here), you are my hero!  

Read the April 18th comment and applaud:  http://butdoctorihatepink.blogspot.com/2010/04/martina-navratilova-diagnosed-with-dcis.html