DCIS>6cm should I be more worried?

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robin2
robin2 Member Posts: 7
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi everyone I am 50 and had a mastectomy with reconstruction after screening mammograms showed 'extensive' DCIS confirmed by core biopsy(Intermediate Grade) in July 2010.The mastectomy path report read 'Solid,cribiform,papillary pattern cell growth- Intermediate and High Grade DCIS extending from the nipple to 2mm from back of sample in several places maximum diameter 10cms. No invasive component seen'

Initially I was so relieved that I had no invasive disease but now I have asked to speak to the pathologist as I have read that DCIS areas>4cms have a much higher chance of invasion and am worried that he could have missed invasive disease.It is also diffiucult to find much info about the number of people having such a large area of DCIS. I am finding it hard to feel 'lucky' that I dont need any further treatment when the area was so big.Any comments appreciated.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited September 2010

    Hi Robin, can't say I had your problem, but if I did and I was worried I would talk to my doctor about it.  I also notice that you have er/pr+ so you could in all reality do the tamoxifen thing for peace of mind if that's the way you want to go.  Mind you, the Tamoxifen brings it's own problems in Side Effects and some women find these hard to take and others have virtualy none.  But, as I said earlier, this is a discussion you need to have with your doc.   Best of luck.

    Peace, strength, love n hugs.  chrissyb

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010

    Robin,

    I had over 7cm of multi-focal, multi-centric high grade DCIS with comedonecrosis, and I did have a microinvasion.  Here's the thing about that:  The presence of the microinvasion didn't change my treatment at all and hardly changed my prognosis. Invasive cancer is scary, yes.  And even just a microinvasion changes one's diagnosis from DCIS to Stage I.  But the truth is that having a microinvasion (or a really tiny T1a tumor) is not a whole lot different than having DCIS. 

    For those of us who have DCIS with a microinvasion, there are two differences vs. a diagnosis of pure DCIS.  First, we need to have our nodes checked (which many DCIS patients have done anyway).  Second, because of the presence of the microinvasive cancer, like all patients who have invasive cancer, there is a long-term risk of mets.  But for those who have a tumor as small as a microinvasion and who have negative nodes, this risk is small - 1% or less.  What doesn't change with the presence of a microinvasion is the treatment plan (it's the same as it would be with pure DCIS - no chemo, no Herceptin) and the risk of local recurrence (which is 1% - 2% after a mastectomy for DCIS). 

    So what does that mean for you? 

    - If you had any invasive cancer that was missed in the pathology, obviously it would have been very small (since it was missed).  A 1mm microinvasion at most.  If it was there, it was removed from your breast at the same time as the rest of your DCIS.  It's gone and it can't do you any more harm.

    - But what if it had already started to spread?  How do you test for that?  You get your nodes checked.  You had your nodes checked - 4 nodes, all negative.  So this means that if you had a missed microinvasion, it didn't move into your nodes. 

    - Okay, but the reason that anyone (even those who are node negative) with any amount of invasive cancer has a risk of mets is because sometimes it's possible that cancer cells are missed in the nodes, or they've moved through the nodes undetected.  Could that have happened?  Well, the risk of nodal involvement from a microinvasion is only 10% to begin with.  Add to that the fact that you had 4 negative nodes.  So I'd say the likelihood that 1) a microinvasion was missed and 2) the microinvasion had already moved into your nodes and 3) the presence of cancer cells in your nodes was missed in all 4 nodes that were checked and 4) the cancer cells from the microinvasion not only moved into your nodes but moved through your nodes into your body.... well the odds of all four of those things happening are tiny.  If there's a 10% chance of each of those things happening (which seems possible), the chance that all four would happen together is 1 in 10,000. Nothing in the world is impossible but honestly, this is not something that you should be worrying about. 

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  • robin2
    robin2 Member Posts: 7
    edited September 2010

    Beesie- Thank you so much for your reply your logic was both sound and reassuring and I feel will help me on the way to worrying less! Did you go through a process of worrying about the size of the DCIS even though it had all been removed?I had a mammogram in 2007 for lumps on the other side which was reported as normal but when they have looked again at it they have found some microcalcification(but a small amount)so clearly the DCIS developed over the 3years.I don't feel particularly angry about this as I have small breasts so probably would have opted for a mastectomy anyway but the size of the DCIS area has freaked me out a bit.

    Also what is your understanding about the Grade?I had both Intermediate and High and was told by one surgeon that they don't think your Grade changes-so if you have a recurrence it comes back the same grade.The oncologist said that the Grade is more relevant for BCS and the decision whether to have Tamoxifen/RT but that also any invasive disease tends to be the same Grade as the DCIS, so I guess a High Grade would be with Grade 3 invasive disease?

    It is so good to talk to someone-thank you again and thank you to Chrissy too for her comments and support! 

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited August 2013

    robin - I can sympathize with what your are feeling.  I too had grade 2/3 DCIS which extended from nipple to chest wall.  I did have rads after my mast because of poor margins.  I do worry that some type of invasive component was missed and that it will come back.  I am counting on the worry fading over time.

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010

    Robin, no I never worried about the size of my area of DCIS after it was removed.  My surgeon explained it well:  DCIS is pre-invasive so once it is all successfully removed, it doesn't make any diffference how much there was, or what grade it was (specific to the threat of invasiveness or distant recurrence).  That only counts while the DCIS is still in your breast because the greater the amount of DCIS and the more aggressive the DCIS, the greater the possibility that some invasive cancer might be found and the more likely it is that the DCIS will convert to become invasive more quickly.  But once the DCIS is removed from your breast, whatever grade it was and how large it was becomes completely irrelevant. 

    This is not true, by the way, for those who have invasive cancer.  With invasive cancer there is a possibility that prior to the removal of the cancerous breast tissue, some of the cancer cells may have moved into the body undetected either through the nodes or through the bloodstream.  The more cancer cells you have in your breast (i.e. the larger the area of cancer) and the more aggressive those cells are (grade 3, triple negative, HER2+), the greater the likelihood that this could have happened.  So women who had larger, more aggressive tumors face a greater threat even after the cancer is removed. This is why chemo is given to women who are node negative, if they have larger tumors or more aggressive tumors. Usually chemo is considered for invasive tumors that are 1cm or larger in size, or for more aggressive tumors that are greater than 5mm in size. Below that size, the risk of undetected distant invasion is small enough that normally chemo is not warranted.  This is why the risk of distant mets from a microinvasion (which is only 1mm in size), for those who are node negative, is very small.  This is also why chemo isn't given for a tumor as small as a microinvasion.

    While I didn't worry about the size and aggressiveness of my DCIS after it was removed (I did worry until it was removed), because I had an identified microinvasion, I did worry about that.  Probably for about 9 months after my surgery, whenever I had a headache or sore back or sore ribs (from the reconstruction, most likely) or anything like that, the first thought that would pop into my mind was "mets!!".  Then I would tell myself that I was being silly and I would get on with life.  I remember that after about 9 months I had a headache one day and later on in the day, I realized that I hadn't thought "mets!!".  That's when I knew that I was past the period of fear.  Since then, it just never enters my mind.  I think that after a diagnosis of breast cancer, it's natural that we are going to worry.  So we dig around our diagnosis and find something to worry about.  I found it really helped to remind myself that my worry was a normal reaction to the diagnosis and was not based in fact (i.e. there really wasn't a reason to worry).

    By the way, this discussion about the risk of microinvasions and the implications of that is separate from a discussion about the risks of local recurrence.  With high grades of DCIS and more particularly, large or multiple areas of DCIS, the risk of local recurrence is greater, unless very large margins have been achieved.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited August 2013

    Beesie, I don't think enough is said about dcis jumping about the breast. Wide margins are great, but not always a guarantee that all the dcis is surgically removed. My second lumpectomy, one year after the first, I had a quarter of my right breast removed (size C), the surgeon removed two tumors and all the tissue removed was dotted with high grade dcis (the mri or mammo didn't find the high grade dcis spotted through out the large tissue removed.)

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  • iHEARTu
    iHEARTu Member Posts: 213
    edited September 2010

    Thanks Bessie!

    I was 10+, my BMX was in January and I still had some doubts. I've asked all my Drs what they thought about the size of my DCIS and reassured me all is out!  However Bessie, you've said it better than any of the Drs! THANKS!

    -c

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2010

    iHEARTu, thank you!  I'm glad my answer was helpful and made sense.

    barry, I agree.  Enough attention is not put on the fact that DCIS can be multifocal or multicentric.  That's why for those who have grade 3 DCIS, most doctors will recommend radiation even if the margins are good.  Each situation needs to be evaluated individually however.  If someone has what appears to be a small single focus of grade 3 DCIS and has very large margins (minimum 10mm, ideally more) after surgery, then maybe radiation can be considered optional. But that would be a tough decision, since even with those margins, there is no guarantee that there won't be a recurrence.

    In the case of Robin's original question, since she had a mastectomy, I didn't take this to be an issue. I was talking more generally about the types of risks and the nature of the risk that someone faces after the DCIS has been removed.  With DCIS there is only a local recurrence risk whereas those who have invasive cancer face both a local and distant recurrence risk, and the extent of the distant recurrence risk is impacted by the grade and amount of cancer, even after the cancer is removed. 

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