ChiSandy, I am two hours south of Chicago, small town. I am sure the group is a nice group, but right now I'm not in the mindset to deal with possible negativity. Maybe some day I will go. Thanks for the advise though.

ShaneOak, I agree with you. Also a button pusher for me as well. This journey has totally sucked, that's for sure.

MTWoman, great perspective on emotional/scientific aspect of the whole issue.

Bluebirdgirl has left the building. Goodnight to all.

Bluebirdgirl, I see our diagnosis is pretty similar. Feel free to send me a PM if ever needed. No pressure. But I get it.

I take a diagnosis of DCIS very seriously indeed, as that was my diagnosis on one side. Above, I did not indicate a personal view on the question of whether DCIS is "cancer" or "pre-cancer", and I'm still not going to. However, I respect and understand the views of others on this question (for which there is no scientific consensus), be they on one side or the other or on the fence. My own view is that it is what it is. I consider "DCIS" to be "DCIS", with all of its inherent properties whatever they may be and whatever inherent risks they may pose. The story is still developing.

When posting, I often include links to original sources so that others may consult them and come to their own conclusions, as well as discuss the information with their team. (As it happens, the links to the Nature papers by Harper and Hosseini in the related thread were posted by me.) All are welcome to their own interpretations.

Re: "There are always women who are very interested in (and more comfortable with) the scientific facts. For some women, they are more important than the individual experience. . . "

I did not raise Narod or the Nature papers. Someone else opened that door. Posting additional scientific information does not mean that I lack compassion or understanding. I know what it feels like to be diagnosed with DCIS, then bilateral DCIS, then T1mi disease, then T1a disease, etcetera. I am as irritated as anyone by all the press about DCIS that makes uninformed laypersons think that any treatment is over-treatment. I also know the panic I felt when I first read Narod and news features about the Nature papers--a common reaction. I felt that some additional explanation of this research plus a link to the Narod publication (which includes the incidence) might be helpful to some readers. I believe that information can contribute to understanding and well-being.

BarredOwl

Cece, unfortunately it's not that simple. Most experts will tell you that DCIS does not spread.

But... as the cell mutation process continues, a DCIS cell can evolve to become an invasive cancer cell, and at that point the cancer can spread.

Therefore a diagnosis that is mostly DCIS might be found to also include a small amount of IDC, because a few of those formerly DCIS cells have already evolved to become invasive cancer. It sounds like this might be what happened in your case, if you were initially diagnosed with DCIS but your final diagnosis was Stage I.

In some cases, there might be such a tiny amount of invasive cancer hidden in the middle of the DCIS that even under a microscope in the pathology lab, nobody catches that there is some IDC in there. So it is concluded that the diagnosis is Stage 0 DCIS, when in fact there is an occult (i.e. undetected) invasion and the diagnosis is really Stage I. Usually such a small amount of invasive cancer doesn't cause any problems, but in rare cases it does - and that could lead to someone with 'DCIS' developing mets. Very rare, but it can happen. And what really happened was an incorrect diagnosis of DCIS.

What can also develop from DCIS is an invasive recurrence. The initial diagnosis is accurately identified as being Stage 0 DCIS, but after surgery and treatment, a few rogue DCIS cells remain in the breast, completely undetected. Over time those cells might evolve to become invasive cancer, resulting in an invasive cancer recurrence some time (possibly many years) later. This recurrence might be localized (just in the breast area) but on rare occasions might be both localized and distant (i.e. mets).

Therefore while the most commonly accepted medical belief isthat DCIS can't spread, there are several ways that DCIS can develop into invasive cancer and from there, into metastatic cancer.

This pictorial, taken from the BC.org site, helps explain the way that a cell can evolve from being completely normal to becoming invasive cancer:

Ductal hyperplasia is the first stage of cell abnormality. At this point, the odds of progressing to invasive cancer remain very low and as such, ductal hyperplasia is considered a 'no risk' or 'low risk' condition. ADH, the next stage of cell abnormality, is considered to be a high risk condition because about 20% - 25% of women with ADH will at some point in the future develop breast cancer. Then there is DCIS, which is Stage 0 and is considered to be either a pre-cancer or a non-invasive cancer, depending on who one speaks to. After DCIS comes DCIS-Mi, a diagnosis that is largely DCIS but with one or more tiny areas of IDC (none larger than 1mm). DCIS-Mi is Stage I and despite having 'DCIS' in the name, is actually an invasive cancer diagnosis. Finally there is IDC, which is Stage I or higher.

Sorry that there is no clear answer to your question, but I hope this helps explain where a DCIS diagnosis falls and what can develop from it.

I tell people the short version of what my surgeon told me: I had a very early form of breast cancer. But it was in several places, so they had to remove my breast. That's usually enough for BC civilians.

My surgeon completely blew it off and even told me that I didn't need any further care or monitoring other than the yearly mammograms. I insisted on a referral to the oncologist anyway. My oncologist was furious at the surgeon. He explained that DCIS is preinvasive breast cancer. It is breast cancer. It's just contained in the ducts. Radiation and tamoxifen are not a treatment. They are a prevention for further dcis and/or invasive cancer. If you were to go to get life insurance and handed them a diagnosis of dcis where would they classify it? When people ask me I just tell them early stage breast cancer and if they want to know more I explain it the way the oncologist did. I go see the radiation oncologist this week to schedule further test and finally radiation. My medical oncologist has warned me that because I have extremely dense breast I need a MRI and it is very possible we will find more dcis. I am furious that the surgeon kept blowing me off.

Webblock, welcome to BCO! Sorry you are feeling less confident in your decisions after reading this thread. I am a bit confused as to why this thread has left you feeling as if you may not have needed your surgery? DCIS is not invasive yet, but most certainly can become invasive at some point. The problem at this point is that no studies have been able to confidently state that they can determine which ones will and which ones won't. So it all has to go (at this point). There are some studies where they are watching and waiting (active monitoring) but there aren't many women enrolled as current treatment guidelines call for removal.

You don't have your particulars in your sig line, so I don't know your grade or how much was found, but you do state that you were eventually diagnosed with DCIS. The treatment options for dcis are surgery (depending on how much they find, whether it is multi-focal/multi-centric, how large your breasts are to begin and your personal preferences), radiation (typically follows lx, not typically mx) and anti-hormonal treatment (for ER/PR +). If your dcis was "spread all through so much of (your) ducts" then a mx was most likely necessary. I initially presented with a lump. After my lx, a pathologist recommended mri to see if there was more dcis (as the architecture pattern of my dcis frequently presents as multi-focal/multi-centric) and lo and behold, there were 2 more areas in a different quadrant than the lump. At that point, mx was recommended.

The post surgical numbness you describe is pretty typical. It may be that the 'iron' you describe is scar tissue. Have you talked to your doc about that? As far as the itch, sometimes the nerves start to regrow and that can cause some wicked sensations. I have actually gotten all of the feeling back in the skin under my arm and on the skin covering my (reconstructed) foob. It took more than a year, but it happened. Not all women have this happen though. You may want to check out some threads on the "surgery, before during and after forum" to read discussions from others about their healing time and what to expect as you get farther from your mx.

((hugs))

Thank you to everyone here for sharing your thoughts. I was recently diagnosed with DCIS, had needle biopsy and 3D mammograms done. This week is my lumpectomy. I'm told I'll be getting pills to take for 5 years (not sure which ones yet, I'm 60) and will start radiation shortly after the surgery. I'm not sure what to tell people so I haven't been telling them anything. Only my immediate family and 2 people at work know. A co-worker offered to bring me food and I'm feeling very guilty about that because I'm thinking I'll be fine. I am happy though to see that most people are kind and good. No one should downgrade what others are going thru ever because everyone's situation (and body) is different. Thank you all again for sharing.

Infobabe, mx does not insure that you are "done with it" once and forever. The risk of local recurrence and distant metasteses is absolutely significantly reduced, but we have women on these boards who were originally diagnosed with pure dcis, were aggressively treated, and then ended up with mets. The medical research community is trying to learn more about dcis, and which cells (or which micro-environment in which the cells reside) is more likely to cause a problem down the road. They still can't say yet. So even with a dcis diagnosis, followed by mx, all one can correctly state is that she/he is NED.

(edited to add) The question was "what do you say to people", not "what is it", as the "answer" to that question is still contested within the medical community. The black and white answer "DCIS is pre cancer" is why this thread is here

I was just diagnosed with DCIS last week, my description is it’s the best of the worst. The way that it’s spread out in my breasts means I will Ben having a double mastectomy. So it’s real to me