Fill Out Your Profile to share more about you. Learn more...

A laypersons guide to DCIS

1235789

Comments

  • april485
    april485 Member Posts: 1,983
    edited January 2013

    Thank you for all of this information. At least I feel I have a better understanding of DCIS (was diagnosed today Frown) but my head is still spinning. Don't have much information yet as only prelim path report. DCIS >1.5cm Grade 2. Nothing else available yet. Ugh. Thanks for doing this though.

  • jsc
    jsc Member Posts: 1
    edited February 2013

    I do not see any information on removing two close by sites from the same breast doing a lumpectomy is this not an option?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited February 2013

    jsc, yes, a lumpectomy might be an option for you. It's not covered here because I was just trying to provide general information about DCIS rather than get into specifics of treatment and details on the treatment choices. Those things are covered well in other areas within this forum, in other forums on this discussion board and on the BC.org site.

    If both your areas with DCIS are in the same quadrant of the breast, and particularly if you are large breasted, then a lumpectomy might be considered an option. But every case is different so this is really something that only your surgeon can advise you on.  You also may want to talk to more than one surgeon so that you get a couple of opinions. 

    This section of BC.org might be helpful: http://www.breastcancer.org/treatment/surgery/lumpectomy/who_for 

    And if you have want to know if others here have had a lumpectomy for two sites of cancer and how that's gone for them, you might want to post a question in the Surgery forum on this board: Surgery - Before, During, and After

  • bren58
    bren58 Member Posts: 688
    edited June 2013

    Beesie, thank you for putting all this great information together in one spot! It certainly has helped me make sense of my own 13 year journey with this disease.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2013

    Bren, thank you!  Cool  I'm glad the information helped.

  • lisagwa
    lisagwa Member Posts: 39
    edited June 2013

    Bren58- I noticed that you originally had DCIS grade 3 with bmx and then a new diagnosis 12 years later. I have DCIS grade 3 with bmx but ER/PR-. I know there is always the 1-2% of recurrence. However, did your doctors give any insight to your new diagnosis especially being that it was so long ago. My concern is that grade 3 is more aggressive and can return.



    Beesie - You offer great info which I also appreciate. You mentioned in another post that you have seen women on these boards with Stage 0 and then recurrence. I have not seen this. Is there a way for me to find this?



    Thanks.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2013

    Lisa, I assume you are referring specifically those who had a recurrence after a MX or BMX for DCIS?  The following thread is not exclusive to those who had DCIS, but a number of DCIS women who've had recurrences have posted here:  Topic: Recurrence after bilat mastectomy?

    And here are a few articles/studies about recurrence rates after a MX for DCIS: 

    Analyzing the risk of recurrence after mastectomy for DCIS: a new use for the USC/Van Nuys Prognostic Index.   This study reported a 2.2% recurrence rate (11 women out of 496) over an average follow-up period of 83 months.

    Local recurrence of ductal carcinoma in situ after skin-sparing mastectomy.  Over a mean follow-up period of 82.3 months, 5.1% of the 223 women experienced a recurrence.

    Impact of margin status on local recurrence after mastectomy for ductal carcinoma in situ.  2 out of 142 women (1.4%) experienced a recurrence over an median follow-up period of 7.6 years.

    Is radiation indicated in patients with ductal carcinoma in situ and close or positive mastectomy margins?  Of the 193 women followed for a median follow-up time of 8 years, the recurrence rate was 1.7% overall and 3.3% for those who had high grade DCIS.

    So the risk of recurrence after a MX for DCIS is low, but there is definitely a risk.  It's important to remain diligent and continue to check your (reconstructed) breasts or your chest (if you opted out of reconstruction).

  • lisagwa
    lisagwa Member Posts: 39
    edited June 2013

    Thank you, Beesie.

  • bren58
    bren58 Member Posts: 688
    edited June 2013

    lisa, I fell into that 1-2% category. My recurrence was in a lymph node under my arm. When they did the ALND surgery recently, they found that there was also some DCIS in the remaining breast tissue under the arm. It looks like it took about 12 years for that DCIS to break through and become IDC.

  • lisagwa
    lisagwa Member Posts: 39
    edited June 2013

    Bren58- I am sorry to hear that you had to go thru this again. If you don't mind, I have a few (stupid) questions: how did you find out something was wrong? was there a lump that you felt under your arm or can it not be felt if its in the lymph node? Was the DCIS which was found under the arm in a separate area from the lymph node?



    Obviously, we try to do everything to minimize recurrence but there still is that scary residual factor. I wish you the best and thank you in advance for being candid.



    Lisa

  • bren58
    bren58 Member Posts: 688
    edited June 2013

    lisa, I sent you a PM.

  • sandpiper1
    sandpiper1 Member Posts: 508
    edited June 2013

    Oh darn Bren, I was waiting for your response ;)

    As I had the same question of you.

    I am not really worried about a recurrance or new primary, but was curious since you had a Double MX.

    I am only a UMX. BS will probably have me get MRIs periodicaly as a Mammo of the recon side isn't warranted.

    Even though I was a grade 2, I did have comedo necrosis, w/o evidence of invasion, I did have over 7cm of DCIS in the upper and lower outer quadrants.

  • tlew
    tlew Member Posts: 48
    edited June 2013

    Bren- would love to hear the answer to lisa's question as well...

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2013

    May I request that this discussion be continued in another thread that's specific to the topic?  I'd like this thread to remain a general information thread about DCIS.

  • grandkids10
    grandkids10 Member Posts: 1
    edited June 2013

    Beesie:  Thank you so much for all the information provided.  Today, 6/10/2013, I received a diagnosis of noninvasive DCIS stage 0.  I had that same diagnosis in May of 2010, after which I had a lumpectomy and radiation on the same right breast.  I am still in shock and trying to learn what my options are.  I have yet to speak with a surgeon and will also get a second opinion.   It appears the past surgery was successful as that part of the breast is cancer free.  Today's diagnosis is in an entirely different location, although the same breast.  Are you aware of them ever doing a second lumpectomy on a breast?  I know you are not a  doctor and I will seek out two opinions, but am curious as to how often this happens.

  • fayence88
    fayence88 Member Posts: 3
    edited June 2013

    Beesie thanks so much! Newly diagnosed and trying to work out treatment. Clear margins but comedonecrosis in right breast and about to have surgery on left breast for atypical dysplasia apparently "about to turn to DCIS", before suggestion for surgery in left breast 16 sessions of radiation were recommened at Memorial Sloan Kettering with Dr. McCormick. I am overwhelmed with confusion at all the range of suggestions from my orginal surgeon who said "all the DCIS is removed, come back for mammogram in 6 months" to an oncologist who said "do radiation with tamoxifen since you are hormone receptor. I'm 60 and trying to decide treatment, additionally my gyno orginally said "do a mastectomy you have large fibrocystic breasts with diffuse microcalcifications but  2 weeks later he said there is too much agressive treatment like mastectomy and radiation, think very hard before you do either.

    Is there a support group in New YOrk city? I like this viritual group very much but when my partner went through prostate cancer we learned most from the UTOO group that met.

    Thank you everyone for your posts and Beesie for summing up all you've learned.

  • fayence88
    fayence88 Member Posts: 3
    edited June 2013

    beesie i think i posted in the wrong thread being new to the group, please let me know if this is so and i will re post.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2013

    fayence, welcome!  I'm glad you posted.  I do try to keep this discussion on the general topic of DCIS rather than let it shift too far into a detailed discussion of individual diagnoses.... I had a previous thread on this same topic and it got to the point where it was difficult to find any of the more general information because there was so much discussion going on about individual situations.

    To keep this discussion general Wink, it sounds as though you are facing the same confusion that a lot of women with DCIS face.  There are two very distinct camps out there within the medical community, when it comes to treating DCIS. There are those who feel that DCIS is over-treated, with too many women opting for mastectomies and bilateral mastectomies for a disease that in it's current form (as pure DCIS) is never going to cause any harm. This camp includes those who suggest that some DCIS may not even need to be removed, or certainly, that treatments like rads and hormone therapy may not always required, even after a lumpectomy.  Then there is the other camp which points out that DCIS, if not adequately treated, has the potential to develop into invasive cancer, and if that happens, it most certainly can cause harm. So those in this camp tend to suggest that patients do everything and anything they can to ensure that there is no recurrence and that the DCIS is fully and completely treated the first time.

    Personally, I see both sides of it.  I get frustrated - maybe 'sad' is the better word - when I see what I consider to be overtreatment, particularly if someone is suffering as a result of those treatments.  But I also get very worried when I see what I consider to be undertreatment, fearing that this might lead to a recurrence and possibly, a much more serious diagnosis down the road. I've been here long enough that I've seen many women in each of these situations. Of course I say this recognizing that overtreatment and undertreatment are subjective terms - my definitions are not necessarily anyone else's.

    For me, part of the problem is that on both sides of the argument, we have doctors who go to the extreme. Based on current imaging and diagnostic tools (which are far from precise), I don't see how any doctor can responsibly tell his or her patient to not even remove an area of DCIS, or in some cases, to not even have a biopsy for something that might be DCIS.  There is simply no way to know if what appears to be a small amount of low grade DCIS on the imaging films really is just that, or if it actually is a larger or more aggressive DCIS or it even already include some invasive cancer.  Similarly, I don't see how any doctor can responsibly recommend to his or her patient who's had a BXM for DCIS (assuming good margins and that the patient isn't BRCA+) that hormone therapy should be taken.  And I wonder about doctors who adamently insist that a patient with 2mm of low grade DCIS and 1cm margins must have rads or else she is being irresponsible and putting herself at great risk. 

    I wish that with all the articles about DCIS, there was more written about how a patient should determine what, for her, would be the appropriate treatment.  Not overtreatment and not undertreatment, but given the specifics of her particular diagnosis, what would be the most appropriate treatment? Why is it so difficult to get doctors to approach it this way?

    fayence, for me, the answer to figuring out what's appropriate would entail a review of the diagnosis and pathology.  How large was the area of DCIS?  Was there just one area or was there more than one?  What was the grade?  What were the margins?  Was an MRI done to ensure, as much as possible, that there are no other suspicious areas in the breast?  Is the hormone status both ER+ and PR+ and if so, how strongly positive? Those are some of the things that I would want to know.

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited June 2013

    Bessie - Very well put. I agree DCIS can be over treated.

    In June 2012 I received the DCIS diagnosis. Stage 0 grade 2. I was braca negative. I was going to just have the lumpectomy. Because I have an autoimmune disease I was afraid of the radiation. When they did the surgery the Dr did not get clear margins. He had to go back in and after that I caved in to rads from fear it was bigger than we thought. That is what they told me. Looking back now and doing some research I have discovered that one or two lumpectomies has more to do with the surgeon and hospital you use. My hospital is small and my surgeon not a dedicated BC surgeon. Had I used the teaching hospital an hour from here the BC surgeon could have sent the specimen to the lab with an answer while i was still under. That would have saved me a surgery and a second opinion may have helped me choose to not do radiation. I did survive the rads but it was very tuff on my body and caused my other disease to come out of remission. There is a lot to consider. Good luck to you.

  • Barbi811
    Barbi811 Member Posts: 11
    edited June 2013

    Hi Bunkie

    Are you ER positive if so what is the percentage..I had lumpectomy for DCIS Stage 0 intermediate.

    ER positive 95 % ... It is a yr later I had no Radiation in the past..My three drs are on my back to be treated with tamoxifen..I am going to pick up script today and start it this week..On my way not to think about it as much as I have..I do believe we have a tendency due to our fears to give too much thought..I am hoping my Hyperthyroidism does not come back..It has been in Remission for 4yrs..now and Im doing so well...Like I say I am Blessed to stop this pill if I do get sick on it and I will...My percentages are too high not to try it..



    Warm Regards

    Barbi 811

  • Barbi811
    Barbi811 Member Posts: 11
    edited June 2013

    Hi Bunkie

    Are you ER positive if so what is the percentage..I had lumpectomy for DCIS Stage 0 intermediate.

    ER positive 95 % ... It is a yr later I had no Radiation in the past..My three drs are on my back to be treated with tamoxifen..I am going to pick up script today and start it this week..On my way not to think about it as much as I have..I do believe we have a tendency due to our fears to give too much thought..I am hoping my Hyperthyroidism does not come back..It has been in Remission for 4yrs..now and Im doing so well...Like I say I am Blessed to stop this pill if I do get sick on it and I will...My percentages are too high not to try it..



    Warm Regards

    Barbi 811

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2013

    Barb811, rather than start up a new discussion about Tamoxifen here, there is already some good discussion about DCIS and taking Tamoxifen in the following threads here on the DCIS forum, including discussion from some women who have also opted out of rads:

    Topic: DCIS 0 controversies making me nutty

    Topic: DCIS treatment confusion- please read thanks

    Topic: Tamoxifen after lumpectomy and rads: yes or no?

  • fayence88
    fayence88 Member Posts: 3
    edited June 2013

    Beesie, thank you for your research and your support! I hope to know more about my actual diagnosis tomorrow after I see the surgeon at Memorial Sloan Kettering. This is what i have from the last pathology report

    DCIS, intermediate, cribiform with necrosis, longest span of tumor 10mm

    I am 60 and have many calcifications and fibroystic breasts. I am keeping this short as I want to make sure i post on the right thread and not confuse your general overview with specifics as you have requested, again thank you! Do you know if there is any DCIS support group that meets in New YOrk City, or perhaps i shoudl post this to the group at large? Or am i doing that now?

    sorry just getting the hang of the group postings, Fayence

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited June 2013

    Barbi - I am ER-/PR-. That was why the decision was so hard.

  • Barbi811
    Barbi811 Member Posts: 11
    edited June 2013

    Hey Bunkie nice to meet you.

    I am going to start tomorrow a.m. after breakfast with 20mg Tamoxifen..Made my mind up to go for it..

    At least this is a fighting chance...

    I will keep my gals posted. I read some ladies split and take 10mg in a.m. and 10mg. in evening..I guess whatever is better for each individual.

    Barbi811  :)

  • lilacblue
    lilacblue Member Posts: 1,425
    edited June 2013

    Bunkie10 and Barbi811 you both have been asked nicely to post elsewhere regarding tamoxifen and to please leave this thread for DCIS facts and misinformation.  This is what it takes to keep a informative thread on track -- to repeatedly kindly ask and offer other thead alternatives -- rather than hijack this excellent resource for personal chit-chat to be waded through for a woman in early diagnosis trying to find the solid information for DCIS understanding and answers.  Show some respect to other woman and shift over to a thread that has been offered on your issues or message each other.  It's childish and obvious to continue reading you both ignoring Bessie's reasonable requests.

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited June 2013

    Wow LilacBlue - Sorry you were so terribly offended. My apologies to Bessie too. It was not intentional. Just got caught up in the posts. Will remove my recent postings.

  • Barbi811
    Barbi811 Member Posts: 11
    edited June 2013

    LilacBlue

    Shame on you...! No need to be nasty..!!!

    Stay well my friend and cool down  .    WinkI forgive you ..

    Barbi811

  • Barbi811
    Barbi811 Member Posts: 11
    edited June 2013

    LilacBlue

    By the way honey,my msgs  have to do with DCIS...:)

    Thank you

    Barbi811

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2013

    LilacBlue, thank you!  Smile

    As I mentioned in quite a few recent of my recent posts in this thread, I really am trying to keep this discussion on the general topic of DCIS rather than let it shift too far into a detailed discussion of individual diagnoses and treatments. I've put a lot of work into this thread, and I would like it to remain relevant to anyone diagnosed with DCIS, rather than veer off onto topics that are meaningful to only a few people.  We have the whole DCIS forum in which to discuss any and all issues related to DCIS. There already are threads on pretty much every specific topic (use the Search function to find discussions that you can join on topics that are important to you) and of course anyone can start their own thread to put forward their own concerns or questions or talk about their own diagnoses and treatments. There are many place for those specific and individualized discussions. I try to keep them off this thread because I don't want someone new to come to this thread, read only the last few posts and conclude that it's a very specific discussion that isn't relevant to them, thereby missing out on all the more general discussion that we've had throughout the thread.

    Sometimes when someone asks a question that is specific to her own situation, it raises important broader issues; I thought fayence's comment about the very different treatment recommendations she got from different doctors highlighted a problem that many women with DCIS face. So it's not that I want to keep other people from joining the discussion - in fact, I hope that more people do join the discussion - but I would like the discussion to stay on the bigger broader issues and questions that everyone diagnosed with DCIS might face.

    fayence, I don't know of any DCIS support groups in New York but I do know that there are a lot of women from New York on this board.  Maybe you can start a thread in the "Just Diagnosed" forum - or any one of the broader-based forums - to find some of the other NY women and see what they recommend.