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A laypersons guide to DCIS

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  • Rose12
    Rose12 Member Posts: 15
    edited October 2012
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    This was a very good article to read, thank you. I have a question and I hope you all will understand. I am fairly new, My final biopsy report showed I had 45% DCIS and the rest was IDC it did not say anything about microinvason. Did I have miroinvasion being it was mixed? They diagonised me as having IDC. Also, if someone has DCIS why do I see so many people getting a mastectomy? I am not fully understanding the reason. I hope I am not offending anyone by asking this question.

    Thank you,

    Rose

  • blinthedesert
    blinthedesert Member Posts: 37
    edited October 2012
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    Rose, microinvasion is a very very small amount of IDC, or a DCIS tumor that has broken through the outside of the ducts but does not quite have the same cellular make-up of IDC.  Since your tumor was primarily IDC (55%) with some DCIS, you would be classified as IDC.  

    Although DCIS is a malignancy that has not broken outside of the ductal tissue of the breast it can be extensive through-out the ducts, in which case it would be impossible to remove it all and still have good cosmetic effects.  This is one reason women with DCIS have mastectomies. It is also often the case that these same cases with extensive DCIS also are of high grade (grade 3), and if DCIS does evolve to invasive disease it is usually the same grade as the DCIS - so these women are of high risk of high grade IDC.   The "usual" rule of thumb is younger age, or larger amount of DCIS, or higher grade with necrosis, then mastectomy is recommended. 

  • Rose12
    Rose12 Member Posts: 15
    edited October 2012
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    Oh thank you so much BLinthedese! I just really could not understand why a mastectomy would be needed. So much to learn about all the different breast diseases. I think my cancer started out as DCIS and was progressing to IDC when it was caught. I heard this happens. Thank you so much for the info. Embarassed

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited June 2013
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    Blinthedesert,

    We do have a same type of diagnosis. I am going to talk to my RO today and see what he says about all this. Last time he told me none of it could be rads. I beg to differ so here we go. I am still not sure I should have bypassed the Vannuys Index for a second opinion but we will see. Hopefully I can finish rads and get on with my life.

  • blinthedesert
    blinthedesert Member Posts: 37
    edited October 2012
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    What your RO meant was that it would be unlikely - rare, if you will - for your symptoms to be caused by radiation so early.   *Usual* symptoms at this stage of your treatment are fatigue and possible skin problems.  Some of the higher stage ladies who are getting their lymph nodes radiated might have other issues with swollen nodes, women who are getting radiated after a mx could have more scatter to other tissues ... but for *most* of us, the side effects don't start until 3-4 weeks out, and then get worse until about 2 weeks after completion.  We are all different though and your RO should be receptive to what you are feeling.  One thing I did notice about the SE's you are feeling is that they sound like they could be dehydration -- which is a potential problem when you don't feel well.  Have you thought about supplementing with some gatorade or electrolyte drink?  I am a runner, and I use http://www.emergenc.com/index.php/products/specialty/electro-mix regularly.  A little goes a long way (one package lasts me 4 mornings).  You can find them at some groceries, drug stores, or at your local health food store.

    Good luck to you.

    We should probably take any further discussion about your potential problems over to the Radiation thread, as this thread was established as a means to discuss DCIS in general, and not individual diagnoses, treatments.

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited June 2013
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    I will look into that. Sorry to get off the topic here.

    DCIS is very confusing. This helped a lot.

  • Catherine
    Catherine Member Posts: 15
    edited October 2012
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    Very informative, Beesie.

  • 0000
    0000 Member Posts: 2
    edited October 2012
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    I hope that I am not going off on a tangent with my question on this thread. However, I also have been second guessing my lumpectomy. Originally, I was told that I had a small IDC tumor 9mm. However, after the lumpectomy, my tumor was 1.6 cm with 4 cm DCIS. It is a grade 3 but lucky that nodes are negative. I am 59. Any advise if I should reconsider a BMX. I was told I would have to have whole breast radiation, and I am concerned about the SE, especially the heart.

    Thanks,

    Jenifer

  • Maudene
    Maudene Member Posts: 1
    edited October 2012
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    Wish I had found this thread a month ago! or even a week ago! It's kind of ironic tho because you said almost the exact same thing my Rd Onc said today...literally!
    You did a wonderful job with this. Thanks so much!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2012
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    You're welcome! I'm glad the information is helpful.  And I always feel good when I hear that what I've written has been verified by a doctor! So, Maudene, thank you!  Cool

  • 1boob
    1boob Member Posts: 11
    edited November 2012
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    Beesie, when you talk of screening....  I had a mastectomy but the other breast is intact. I have had MRI screening for the existing breast a year later but have not been offered screening for my mastectomy side. I asked the surgeon (strange and difficult man) and he said any recurrence would be at the margins of the area, ie at the circumference of the flat area. I never thought to ask for screening there. Is this even possible? I can't see how they could do it. Luckily surgeon is retiring next year and going to hand me over the the oncologist so I shall ask her when I see her late next year.

    Incidentally I asked about testing for hormone involvement by the pathology lab that examined the cut off breast. I asked the surgeon why not. "We don't do it".  So I forced him to tell me why not at the next appointment. Surgeon explained that with a mastectomy they didn't think it was worthwhile as the side effects of tamoxifen outweighed the benefits in the case of mastectomy at my age (68). Here in the UK we often have less treatment than you do in the USA, even though I am doing this privately. It's all a bit confusing

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    1boob, from what I've seen from most women on this board, usually screening on the mastectomy side is just manual checks.  Sometimes these screenings are done by an oncologist or breast surgeon, or sometimes the patient is handed back to her gyne or primary care physician for the follow-up screenings. What my surgeon told me is that a recurrence can happen anywhere against the chest wall or against the skin. Reading this board, it appears that the scar line and the margins of the breast area are the most common locations. For someone's who had a MX, either without reconstruction or with implant reconstruction (with the implant put behind the muscle), the chest wall is pressed right up against the skin. This means that any cancer that develops either against the chest wall or on the skin should be noticeable very quickly with just a manual check. I know that if I run my hand over my reconstructed breast, I would notice even the tiniest nodule.

    As for Tamoxifen, my oncologist would agree with yours that the risks of Tamox outweigh the benefits for those who've had a MX for DCIS or any pre-invasive or high risk condition.  The reason to take Tamox is if you had a single MX only; in that case, Tamox. might be recommended as way to reduce BC risk for the remaining breast. The thing that needs to be considered in this case is that our BC risk for the remaining breast is a "lifetime" risk whereas the risk reduction benefit from 5 years of Tamox. lasts only 10 - 15 years. So the benefit of Tamox. as a preventative is often quite a bit less than people think.  In any case, the ER/PR status of the original diagnosis really doesn't matter if you are taking Tamox. as a preventative for a future BC because a new primary diagnosis might have a different ER/PR status than the previous diagnosis.  

  • 1boob
    1boob Member Posts: 11
    edited November 2012
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    Thanks, Beesie. You have been so enormously helpful to me. Yes I have had manual checks from the breast surgeon each time I see him. That's reassuring. I thought when screening was mentioned it had to be mammograms or MRI or something. When I see the breast surgeon again in Feb I will try to remember to ask what I am looking for. The infra mammary fold  below my scar has sort of beefed up, ie got a little and pleasing hillock. I better ask him if it could grow there. Although he makes me laugh a lot (without meaning to), I find it difficult to remember stuff when I see him. I may be better off when my regular checks are with the oncologist who is female and normal. Although I enjoy our sparring relationship greatly, it will be a relief I think to have a doctor with some people skills.

    Incidentally our medical authorities are investigating a rogue breast surgeon who gave mastectomies to women who didn't even have DCIS - just cysts. It sort of reminds you not to be too trustful. My breast surgeon didn't like the way I won't take his word for anything: but when I read about the rogue surgeon I was glad that I hadn't.

  • lilacblue
    lilacblue Member Posts: 1,425
    edited November 2012
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    1boob, I too live here in the UK (Kent). I had a early evening appointment on Tuesday with my oncologist, reviewing recovery so far and future treatment. As I have insurance, I've had mx w/reconstruction and too asked about future mamograms.  I will have them yearly for five years on my healthy right breast and not my left.  I had two tumors with very slight invasion that were removed - the invasive cancer had been removed from a overly robust stereoscopic biopsy by a well known breast specialist radiologist  that left me terribly bruised. 

    Between the two tumor areas was a 23mm area of DCIS.  When my pathology report came back, after surgery, no idc was present.  I have had awful SE's on letrozole 2.5mg these past 3 months and now I've been off it for 10 days and feel so much better.  My onc said since letrozole is not working and reduced my quality of life - that with clear nodes, no invasive present in surgery pathology - DCIS only and having had a mx, in the UK, the protocol is actually not  go with hormone therapy, so she states I can forgo it.  She has set up another appointment with another onc for a 2nd opinion on that fact. She does have two other types she can offer me if I insist on hormone therapy.

    This has me concerned as I've read on these boards, IDC present trumps DCIS.  I think the 2nd opinion would be good and I do want to keep my right breast healthy and as it is.

    That awful, quack doctor was struck off and I read a sad story last night in the Guardian of a woman who had a needless mx from him and how much it has affected her life and mental state. 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    LilacBlue, you are right that IDC trumps DCIS. With a Stage Ib diagnosis, although you do have some DCIS, and like DCIS patients you do have an early stage diagnosis, your situation is different. I set this thread up to provide general information specifically about DCIS because there are differences vs. IDC, so I'd caution that a lot of what's discussed here might not be fully relevant to your diagnosis.  One of the parts in particular that is not relevant is the discussion about anti-hormone therapies such as Tamoxifen or Femara (letrozole), because there are additional benefits for those who have invasive cancer.

    If you haven't already done so, you might want to post your concerns in the IDC or Stage I forums on this board.  You'll find lots of other women who have combination diagnoses, with both DCIS and IDC, and there are sure to be others who've struggled with the decision about hormone therapy in the context of having a small amount of invasive cancer. 

  • lilacblue
    lilacblue Member Posts: 1,425
    edited November 2012
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    Thank you Bessie and at this point in time, I'll go to the 2nd onc opinion and then perhaps reach out on the IDC thread.  I'm finding that at times, protocol is slightly different in the UK than it is in the US.  I had much more DCIS, than IDC and being pro-advocate for my care, I'll take a active role in decision making, no doubt about that.  I'm sorry to perhaps move this off topic and will delete my post to keep discussion continuity intact. 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    LilacBlue, I'm sorry you deleted your post. 

    The point that both you and 1boob have made about the protocol in the UK being different is interesting. Canadian protocol is almost the same as the U.S., but there are some differences here too.  A lot of women with DCIS are not tested for hormone status in Canada, and I'd say that in general, here too they lean towards less treatment. I don't think that's necessarily a bad thing, unless of course someone is refused a treatment that she really needs. Every treatment has side effects and while some would argue that you should "throw everything" at a cancer diagnosis, even DCIS, in fact sometimes it's actually more harmful to the patient to have a treatment than to not have it.  In Canada, while there are treatment guidelines and guidelines for when certain tests should be given, ultimately it's the doctor's decision and a doctor can order a treatment or test for a patient if they feel it's necessary or appropriate, even if it falls outside of the guidelines. 

  • 1boob
    1boob Member Posts: 11
    edited November 2012
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    I have heard it said that the average age of death in the USA and the UK is similar but that in the US people have had more medical procedures than those in the UK. Not sure if this is accurate. But, because our healthcare is free (though I opted for private treatment), we probably have fewer procedures. There are protocols for cancer treatment - I have looked up my breast surgeon's published papers and seen that he had done for me what is protocol - mastectomy with good margins (I had a lot of DCIS comedo): no radiotherapy: no tamoxifen.  I asked if he would take both breasts off and he refused "unless I insisted." At the time I was exhausted and stressed to the point of collapse before the diagnosis because I thought my husband was dying (he didn't). So I took his advice but in a way I might almost have preferred to lose both. But I guess I still could. Here in the UK we have had a shocking rogue breast surgeon who has cut off breasts without any cancer in them at all, and has done cleavage-sparing mastectomies which make women vulnerable to cancer return. The lesson I take from this is that we need to take an active part in treatment and do some double checking. I was just too tired do to proper double checking with google scholar before I had my treatment. I have done it subsequently and see that my surgeon was well qualified, wrote peer reviewed articles and was reliable. I am not that far away from the rogue surgeon's catchment area so I count myself very very lucky.

    I have found this message board a life saver because it is for DCIS patients, not those with invasive cancer. Those with invasive cancer have a much rockier road and I think I would not feel able to show my feelings of anxiety etc when faced with women who have so much more to bear.

    AND of course we have Beesie.

  • dessert1st
    dessert1st Member Posts: 12
    edited November 2012
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    Thanks for all this information. This is a great thread to show to others, especially who hear stage 0 and don't quite understand that it is still cancer! If it wasn't it would have no stage at All!!

  • Janeyatl
    Janeyatl Member Posts: 2
    edited November 2012
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    I was diagnosed with DCIS stage 0. I opted to do bilateral mascetomy with tissue expanders. Just did it on 10-31 and recuperating with 4 drains. My chest tightens up now and then and I'm more mobile since SUnday but it takes a lot just to get through the day. Seeing my dr. On Thursday for the results. A little anxious but she called and say everything went well.

    Can someone tell me how long the expanders stay in before the actual breast implants! Thx

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    Janatl, everyone's situation is different.  It all depends on how large your reconstructed breast will be, how much you get put in during each fill, how often you get fills, etc..  Only your plastic surgeon can answer your question specifically as it relates to your situation.

    There are a lot of discussion threads about expanders in the Reconstruction Forum on this board.  You will get a lot of useful information there. 

    Forum: Breast Reconstruction

  • moderators
    moderators Posts: 8,287
    edited November 2012
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    Janatl, welcome to BCO.

    The article on the main Breastcancer.org site about Breast Implants can also give you information about how long it generally takes to finish the expansion process, and be ready for your implants.

  • Janeyatl
    Janeyatl Member Posts: 2
    edited November 2012
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    Thx Beesie and Moderators. I'm new to this and the message boards and forgot where I posted my question. Will ask tomorrow. Can't wait to have these drains out.

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited November 2012
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    I have a question about DCIS although my treatment is over. I had DCIS stage 0 with a grade 2. My margins were not clear with my first surgery but were good with the second. My area of tissue taken was 2cm. I was told there was no reason to do nodes as it was DCIS only. I am ER/PR negative and they did not do HER2. I was tested and I do not carry the gene. I am 60.

    I did not want rads but felt scared the cancer would grow or return without it. I was never offered the VNPI or any other comparisons. After much reading here it looks like if some cancer cells escaped during surgery or otherwise they would not grow into invasive cancer. So why then do they recommend rads?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    A DCIS cell doesn't become an invasive cancer cell just by moving it outside of the milk duct.  So if DCIS cancer cells are moved (let's say by a surgical instrument) during surgery, they will not develop into invasive cancer.

    But DCIS cells that remain behind in the breast in the milk ducts can continue to develop.  Because DCIS is confined to the milk ducts, as the cancer cells multiply (as cancer cells are prone to do), they don't usually form into a solid lump or mass, as happens with invasive cancer. Instead they tend to spread out within the ductal system of the breast.  This is why it's not unusual to find large areas of wide-spread DCIS, such as I had.  As DCIS spreads out within the milk ducts, sometimes it 'jumps'.  In other words, there can be a small open space in the duct between two areas of DCIS. This is why it's so important to have good margins with DCIS.  If the margins are small, it's possible that some DCIS might still be left in the breast, in the milk duct that's just beyond the surgical margin.

    And that's why rads is given. If the surgery did not remove all of the DCIS, if some DCIS is left in the milk duct beyond the margin, this DCIS can continue to develop and become a recurrence.  The recurrence might be found with the cancer cells still being DCIS, or it might not be found until the cancer cells have already evolved to become invasive.  Approx. 50% of DCIS recurrences are not found until the cancer has become invasive.  The role of rads is to kill off any DCIS that might remain in the breast beyond the margins.  On average rads reduces the risk of recurrence by about 50%.

    In most cases after a lumpectomy for DCIS, rads will be recommended. This is because there are many factors that make it risky to assume that there is no DCIS left in the milk duct beyond the margins.  If the area of DCIS is large and spread out... if the DCIS is multifocal (i.e. there is more than one area of DCIS, or there are gaps in the duct between areas of DCIS)... if the DCIS is high grade or comedo-type... if the margins are small... each of those factors present a risk that there could be more DCIS beyond the margins. So these are the factors that suggest that rads is necessary to kill off any DCIS that might be left behind. 

    On the other hand, there are situations where the risk that some DCIS might be left in the milk ducts beyond the margins is judged to be so small that rads might not be necessary. For example, if someone has just a small (let's say 5mm) area of DCIS and they have just single focus of DCIS (i.e. there is no evidence that the DCIS has 'jumped' around in the duct) and the DCIS is low grade (further evidence that the DCIS cells are not multiplying quickly and spreading out), and the margins are large (let's say 10mm), then the likelihood that there will be more DCIS still in the milk ducts beyond that 10mm margin is very small. In a case like this, the recurrence risk would probably be 5% or less.  With such a low recurrence risk, the value of rads is questionable, since the benefit from rads (a 50% reduction of a 5% risk, i.e. a 2.5% benefit) will barely outweigh the risks of taking rads. 

    Hope that makes sense. 

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited November 2012
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    Thanks Bessie. Yes that does make sense to me. Much more sense than me just reading it over and over.

  • blinthedesert
    blinthedesert Member Posts: 37
    edited November 2012
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    Hi Bunkie, congratulations on finishing treatment.  One thing to keep in mind is that radiation is recommended to reduce the risk of recurrence in DCIS, you were essentially "cured" after surgery. Recurrence means either DCIS or invasive (not just invasive) of those that do recur (for us, ER-/PR-, grade 2, risk after radiation is ~10-12% over 5 years, maybe slightly lower for you given your post-menopausal status) 50% are invasive (meaning 5-6% risk of invasive, this is tiny).  

    Best of luck to you in your continued recovery.

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited November 2012
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    Thanks Blinthedese. Did they test you for HER2? They told me they don't do that with ER-/PR- here. Just curious.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    Bunkie, some places test HER2 status on DCIS, others don't.  At this point in time, there is no difference in the treatment for HER2+ DCIS vs. HER2- DCIS so the testing doesn't result in anything being done differently.  In fact the studies on HER2 status in DCIS don't provide much clarity about what it means to have HER2+ DCIS.  With invasive cancer, it's known that HER2+ IDC is more aggressive than HER2- IDC.  The same conclusions have not been made for DCIS, at least not yet.

    There is one clinical trial going on for HER2+ DCIS so some women who are tested may choose to participate in the trial.  But that's about all that the result will do for you at this time.

    Personally, I understand why some DCIS women want to know their HER2+ status - it might be useful information in the future, as we gain new learning - but I think at this point it just causes unnecessary concern if you test HER2+.  And the fact is that 40% of DCIS is HER2+.... whereas only about 20% of IDC is HER2+.  Nobody knows yet why it is that more DCIS is HER2+.

    I wasn't tested and I'm glad.  It's one less thing to worry about. 

  • sandpiper1
    sandpiper1 Member Posts: 508
    edited June 2013
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    Agreed Bessie. Just chiming in......I was not tested for Her status either. Based on much of what you have posted in the past I understood this concept better. I am with an NCI designated cancer center. Just thought I would throw that into the info pool. Everything my SO has recommended has been within all of the guidelines as best as can be determined for true dcis. (My sister is an onc nurse........ lol........she recommended the surgeon but still did her research as I did).......ty for doing so much of that legwork tho Bessie & Blinthe. :)