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A laypersons guide to DCIS

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  • paintbrush
    paintbrush Member Posts: 2
    edited September 2015
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    Thank you for your clarification on the nature of DCIS. Elsewhere on this site it says:

    <<DCIS is NOT invasive cancer. DCIS stays inside the breast milk duct. DCIS can be large or small, but it does NOT spread outside the milk duct into the surrounding normal breast tissue or into the lymph nodes or other organs.>>

    ( http://www.breastcancer.org/research-news/20090410 )

    And this is very confusing, since, for example on DCIS.info they say:

    <<Some DCIS cells can change genetically and become true cancers, and women should not be lulled into thinking that a DCIS diagnosis can be ignored or dismissed.>>

    Although it is understandable that not all is known scientifically, these flat statements are very confusing to the patient/layperson.

    Here, you say that although DCIS cells cannot metastasize, they have the ability to break through the duct walls and become invasive. I gather that means they can move and then change their structure to become metastasic cancer. Either way, it is no help for the non-sicentist/patient to read the flat statement that "DCIS is NOT invasive cancer." It's more important to know that these cells can move and change, and that is why treatment is relatively aggressive.

  • MagicalBean
    MagicalBean Member Posts: 192
    edited September 2015
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    • If DCIS is left untreated, it can grow and break through and become invasive. But if that happens, it is no longer DCIS. It becomes one of the invasive cancers. Pure DCIS, by definition, is not invasive.
    • I don't understand why anyone DX'd with DCIS wouldn't want it removed. Why tempt fate?
  • JerseyRenee01
    JerseyRenee01 Member Posts: 144
    edited October 2015
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    this was truly such helpful info!!! I was diagnosed with DCIS 2 days ago. Tested positive both hormones. I am overwhelmed! Saying I can't even see surgeon I want for consult until Jan-Feb. i was hoping to see sooner just to get answers. I know I need an MRI just to see how much is left in there after biopsy. Right now I have no answers & no plan or going forward. I am leaning on double masectomy only because I am in fear it would return. Other issue is I am very small breasted & afraid Lumpectomy wont be an option for me more so for cosmetic reasons. These are questions I want answers to with surgeon that I cannot even get an appt with.

    I getting the impression it because mine isnt an "urgent" cancer!

    My GYN said if i was to get any cancer this be the one to get as it early.

    I was hoping before year over consult then surgery early next year. Then see other specialists in between.

  • Hokulani
    Hokulani Member Posts: 1
    edited November 2015
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    Great information on DCIS. Have you ever heard of blood filling the breast after lumpectomey and radiation?

  • moderators
    moderators Posts: 8,287
    edited November 2015
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    Does anyone have any insight for Hokulani?

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260
    edited December 2015
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    I have had fluid/blood fill the cavity. I have had my seroma drained 4 times so far since last year, and it has refilled again. It was explained to me why it does this, too active, fluid looks for empty cavities, over use, lymphadema. So many different reasons. I have tried binding my breast cavity after it is drained, and it helps but fluid still manages to seep in. Dr will do surgery for repair if all else fails or it gets to painfull, so far I am not happy with that option. So waiting to see if another draining would work.?

    As for the dcis diagnosis, I had ductal cancer and lobular in the one breast. Picked up on mammo. Went with total double mastectomy for piece of mind. But do more research, cause triple positive breast cancer, makes no promises on re-occurrence for anyone.

    Have a good holiday everyone.

  • vetti
    vetti Member Posts: 1
    edited February 2016
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    Hi Beesie thanks so much for your information I have read many of your posts on DCIS and read around the topic you are by far the most useful resource on the internet re this topic. So much appreciated I do however have one question I have searched many sites but cannot find anyone who has had DCIS extensive as I have had and of course it concerns me. I had a masectomy and the area was extensive high grade (comedo) 170 mm- basically the whole breast there were no clear margins for obvious reasons I will be having radiation treatment. There was no invasive DCIS which came as a surprise and the SNB was clear. I am waiting to hear if I am ER+ etc. (could you explain the PR result and how that affects treatment). I am in my early 50s and live/ eat healthily. I saw your comments on recurrence rates I am curious if you have managed to find specific studies high grade extensive and recurrence rates.

  • Coriander2
    Coriander2 Member Posts: 1
    edited April 2016
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    I am a doctor, and you have done as good a job as I could have in researching and reporting the disease, the statistics, and the treatments.

    Excellent summary.

  • grainne
    grainne Member Posts: 119
    edited June 2016
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    hi, Beesie. Like everyone else, i am impressed. I've been in the bc world since feb this year and i have spent a lot of time in a state of confusion, not even knowing the right questions to ask. I saw my RO yesterday and I thought i had finally got to a point where i could accept reassurance and get on and live my life. I made the mistake of one last google and now I'm back where i started. my diagnosis was dcis/idc. Basically the dcis has started to become invasise in several areas within ithe mass. The idc type is tubular which is very favorable, 0/3 nodes, no evidence of lv invasion, clear margins. Total size 1.3 mm. The type of dcis was, however, cribiform and micropapary. Dcis grade intermediate, ibc grade 1. The RO indicated those types of dcis were favorable and the type/grade wasn't of any great significance because it was non invasive. I left quite happy. Then mr google told me that micropapillary dcis is highly aggressive and should result in a mastectomy to prevent it becoming invasive micropapillary cancer whch seems to have a relatively poor prognosis. i had a lumpectomy and partial breast irradiation. I am 58.

    Does anyone have any thoughts on this? As the micopapillary part was dcis, could it already have metastased? Should i be more afraid of it than of the tubular part? Or can i be reassured that the worst had happened, it had become invasive but only to tubular rather than micopapillary? or am I, yet again, simply not asking the right questions??

  • grainne
    grainne Member Posts: 119
    edited June 2016
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    Hi, everyone. On this website there is an article called "study looks at how many people die from dcis". It is about a year old and quite alarming. It seems to say you can get mets and die from dcis without any intervening invasive cancer. I thought this was impossible. Could anyone read it and explain?

    re my post above, i found an article that said if micropapillary appeared in dcis with 'the usual cribiform' there were no unusual pathological implications, so that seems to be ok.

    Hope everyone is keeping ok.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited June 2016
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    HI grainne:

    Did you obtain a copy of your original and complete pathology report, so you can see the exact wording used (e.g., does it say "micropapillary" versus "papillary")? In any event, if you have any concern about understanding the specifics of your pathology report and whether your treatment plan is appropriate in light of same, a second opinion is an excellent way to obtain additional input and expert medical review of your treatment plan. The process can increase your understanding of the details of your diagnosis, and provide confidence in your treatment plan, which can help reduce second-guessing downstream. I sought a second opinion prior to surgery, but not after, which I regret.

    One can seek review of all imaging, pathology and/or treatment advice at this stage. Pathology slides are physically sent for second review. For more information about the second opinion process, see these sections from the main site here (multiple sections at menu in upper left):

    http://www.breastcancer.org/treatment/second_opinion/why

    Some NCI-designated cancer centers provide second opinion services for out-of-state patients (insurance permitting), as explained on this page:

    http://www.breastcancer.org/treatment/second_opinion/where

    Regarding your second post, I think you are referring to this article?

    Narod paper (2015): http://oncology.jamanetwork.com/article.aspx?articleid=2427491

    This was a very large, retrospective, observational study relying on the SEER database, and there are other possible explanations whereby invasive disease was not recorded or appreciated:

    (1) Deficiencies in record-keeping in the SEER database, such that a recurrence of invasive disease not recorded or reflected in SEER records.

    (2) Mis-diagnosis of "pure" DCIS, such that a small invasive component was not detected due to limitations of pathology or error;

    (3) "Occult" breast cancer (rare), wherein an invasive tumor cannot be found (e.g., the immune system may eradicate an invasive tumor, but not before some cells escaped to distant sites).

    The prognosis of those with pure DCIS remains excellent.

    BarredOwl

    [Edited for typos and grammar]

  • Annette47
    Annette47 Member Posts: 108
    edited June 2016
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    I read the article and interpreted it differently. There was no where in there (edited to add that I was referring to the summary on this site - I did not go to the original article like Barred Owl did) that said you could die “without any intervening invasive cancer”. It said that having DCIS slightly raised your risk of dying of breast cancer 20 years later. That is because once you have had DCIS your chances of subsequently getting breast cancer again are higher than someone who has never been diagnosed. This would include new primary cancers, as well as a recurrence of the DCIS (which 50% of the time recurs as an invasive cancer).

    Even so, the risk was still very small ... only about 3% (edited to add that is total deaths of DCIS patients, not those who never had an invasive occurrence which is extremely tiny). While there have been a few cases of people posting on these boards who were initially diagnosed with DCIS and ultimately found they had mets to other parts of the body (Stage IV), it is VERY rare and the presumption is that they did in fact have some invasive cancer which was missed at their initial diagnosis. You see that here, because those are the types of people (<3% of DCIS patients remember) who need to talk about what has happened to them. The vast majority of the 97% of people who do not have these issues post for a while and then leave as they get back to “normal", so these boards give a biased view of long-term issues.

    Is there a chance you could die of breast cancer now that you've been diagnosed with DCIS? Yes, but there is also a chance (probably a greater chance) that you could die of a heart attack, stroke or get hit by the proverbial bus.

  • lisagwa
    lisagwa Member Posts: 39
    edited July 2016
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    Thank you Grainne and Annette for clarifying so as not to alarm myself and possibly others.

  • grainne
    grainne Member Posts: 119
    edited July 2016
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    hi lisagwa. I'd like to take the credit but it was BarredOwl and Annette who talked us both down! I really struggle with stats but somehow i can'tleave them alone and alarm myself at least twice a day. I had a 1.3 tumour removed that was mostly dcis with some small areas within it which were a type of idc called tubular, the prognosis for which is excellent, i.e. a 1%chance of recurrence. I managed to process that. Then i became aware of the other risks of a new primary in the same or contralateral breast. Now, there is another risk from dcis. Sometimes i feel as if it is absolutely inevitable that it will come back and consume me. Some days i am sick of typing in the words breast cancer and think if only i could stop fretting about stats i would be able to move on. However, there are great people on this site like beesie and BarredOwl and Annette47 and Pontiacpeggy who seemto understand so much and care enough to take the trouble to give the rest of us support. Thanks to you all, you are great. X

  • Brightsocks
    Brightsocks Member Posts: 126
    edited July 2016
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    Here is another study that I just found on the web on tubular.

    http://meetinglibrary.asco.org/content/154858-163

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2016
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    Just wanted to thank the original poster for a great overview of DCIS. I'm not sure there was any new information to me but it was great to re-read from a summary perspective and all in one place. Very useful post.

  • HHandbasket
    HHandbasket Member Posts: 3
    edited July 2016
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    Thanks Beesie. I just got diagnosed with DCIS today so this was super helpful

  • gammaw55
    gammaw55 Member Posts: 2
    edited July 2016
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    I found this post very informative. Thank you for the post. I'm 61 and just recently 6-24-16 dx with DCIS.

  • patpeter110
    patpeter110 Member Posts: 1
    edited September 2016
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    I had double mastectomy in 2002, the last few years I've had pressure feelings in my chest, they have gotten worse, like a vise squeezing my back & chest, I feel like I can't breathe. Could this be from scarring? And what kind of Dr would I see about relieving this worsening discomfort?

  • Remali
    Remali Member Posts: 9
    edited April 2017
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    Thank you for this wonderful information, Beesie!  This has been so helpful, I was diagnosed with DCIS last month.

    ~Renee

  • Slavab
    Slavab Member Posts: 7
    edited May 2017
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    There is a very interesting study just starting in the Netherlands, in the Anthony van Leeuwenhoek Hospital / Netherlands Cancer Institute. The hospital is cancer only and is directly linked (literally same building) with the KNI, most specialists work both places.

    The topic is why some women with DCIS go through to full IDC within a few years, while others can have the DCIS for decades without anything. They are trying to identify markers or events that can predict that, so that they can spare the latter category unnecessary operations and warn the first that they better do something in time and not wait till it gets to IDC.

    This is the group around Dr. Jelle Wesseling, they received a big grant in the Grand Challenge program for this work this year. Very nicely explained at

    http://www.cancerresearchuk.org/funding-for-resear...

    As background info, I called with Dr. Wesseling to get my Czech wife into the program, but she was too far advanced (DCIS G2) but at least we got a second opinion at the AvL. AS the Czech onco-team, they advised mastectomy. After the mastectomy, they found that she actually had two micro-invasions (up to 1 mm). I posted on that in the Microinvasions ER-PR- Her +++ thread.

  • MTwoman
    MTwoman Member Posts: 228
    edited May 2017
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    I applaud the efforts of the research to increase the understanding of what characteristics increase the risk of DCIS becoming invasive disease. This will most assuredly add to our growing knowledge base on dcis. My question is this: they are following women who receive what is considered to be "standard of care" for DCIS and then only looking at those women who have a recurrence as cells that would become invasive without treatment and those women who don't as cells that wouldn't (so should be considered the 'no risk' dcis and shouldn't be treated). But both groups will be getting treatment initially. So the theory that there are cells can be left alone without treatment isn't being tested. Have I missed something? Because I would surmise that some women's dcis could have been caught early enough, and treated appropriately, so didn't recur. I'm not sure I could make the leap that it wouldn't have without treatment.

  • LizMarie1
    LizMarie1 Member Posts: 1
    edited January 2018
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    thank you so much for this information, I have been looking for info I could understand and this makes it very clear. I see my diagnosis in this thread and understand what it all means. I also gained a lot of understanding about myself and others that are going through much more than me.

  • GolferTO
    GolferTO Member Posts: 2
    edited February 2018
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    Thanks for this fabulous post! I am finished my current treatment but wanted to thank the Moderators and various members who posted on the various threads I have followed since being diagnosed. Special thanks to Beesie, ChiSandy, Barred Owl ( whose research and writing skills are awesome) and MTWoman (NED for 15 years and still posting to help newbies like me). Cheers!

  • GraceFrancis
    GraceFrancis Member Posts: 11
    edited May 2018
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    Hi Bessie

    This really helped me. My story just posted as GraceFrancis. I have went through hell with Amimedex day 14, body fell apart. Then waited and went on Letrozole. Day 20 couldn't move,joints a mess. i am 61 yrs old in NJ. I teach high school and need my job. Wednesday May 9th, 2018 I go back to oncologist. My was lumpectomy, radiation, and nothing in lymph nodes. It was stage 1. I have to calm myself down before the appt. Been eating 'Clean". Getting a 2nd opinion June 19th from another oncologist. Check for my original posts under 'Grace Francis". I am not living like a cripple. In addition, I had to see heart doctor who thought I was 'Nuts" about swelling. Yet as a precaution, I will get a stress and echo test next week

  • Heracles
    Heracles Member Posts: 1
    edited June 2018
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    Summary is so well done and appreciated. THANK YOU.

  • wanjiru73
    wanjiru73 Member Posts: 4
    edited December 2018
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    The best Information thread on DCIS so far as a newly diagnose.. I was going all over the place. Now, am yet to have my 2nd opinion

    because I felt the initial breast surgeon was not providing adequate information or considering my viewpoint.

    Now, with DCIS do you have any idea why the discharge would 100% stop by itself and have there been instances the condition can

    self-resolve? I find it a bummer that it is so easy to pass over had it not been for the nipple leak.

    Pls advice as able and thank you!

  • wanjiru73
    wanjiru73 Member Posts: 4
    edited December 2018
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    BarredOwl,

    you bullet-ted it so well no need to add onto it. thank you!

  • gladius7319
    gladius7319 Member Posts: 1
    edited February 2019
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    I found this information and I am very hopeful! just found out yesterday .

  • moderators
    moderators Posts: 8,287
    edited February 2019
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    gladius7319, welcome to BC.org! We are glad that you reached out here and we hope that you will find support and information to help you along the way.

    If you have any questions for us please do get in touch.

    Warm wishes,

    The Mods