anyoneTN with DCIS and microinvasion with no chemo

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2010

    Man! Just when I thought I had a handle on it, I see this thread and now I'm confused. I thought all DCIS was Stage 0 (as long as it's just DCIS, I get it). I thought DCIS didn't get HER2 pathology. So how can a DCIS patient be triple negative? I also thought a micro-invasion wasn't considered bad unless it was over .5mm. The talk of tumours above at 7mm, are they initial tumours? That's small then, right? The cm is bigger than the mm....?

    I was Papillary Carcinoma, 1 cm with micro-invasions of +/- .5mm so I didn't get chemo. My cancer is very rare and I'm told to just say  IDC when anyone asks as no one knows what the heck Pappilary is. I also had ITC, isolated tumour cells and feel very vulnerable. I check the Active Topics to see what's new, so can you see my confusion on this thread? Beesie, haven't you always been Stage 0?

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

    Barbe,

    - All DCIS is Stage 0. Within the TNM staging system, DCIS is Tis / N0 / M0.

    - 'DCIS with a microinvasion' is not DCIS; it is the very earliest diagnosis of IDC.  DCIS with a microinvasion is Stage I.

    - A true microinvasion is 1mm or smaller in size.  A 0.5mm tumor would certainly qualify as a microinvasion.  Within the TNM staging system, a microinvasion is a T1mic tumor.

    - Often women who have slightly larger invasive tumors still call their tumors microinvasions however officially (within the TNM staging system) they are not.  A tumor that is greater than 1mm but no greater than 5mm is a T1a tumor.

    - DCIS can be HER2 tested. So DCIS can be triple negative.  However HER2 testing on DCIS is currently meaningless, since there is conflicting information about whether being HER2+ for DCIS is a bad thing or a good thing.  And in any case, if DCIS tests as being HER2+ (about 40% does, much more than IDC), there are no changes in the treatment plan.  So many women with DCIS don't get HER2 results but certainly it can be tested.

    - For those who have DCIS with a microinvasion, the HER2 testing should be done on the invasive portion of the tumor (i.e. the microinvasion), not on the DCIS.  In that case, the results are meaningful but still, unless the tumor is a bit larger than a microinvasion, usually the treatment won't change.  Once you start getting into 3mm or 4mm tumors (vs. a 1mm microinvasion), sometimes Herceptin and chemo is considered.

    - 1 cm = 10 mm   So this mean that a 1mm tumor is the same size as a 0.1cm tumor.

    - And, to your last question, no, I have always been Stage I with a T1mic tumor.

    My apologies again to the TN folks - I don't mean to turn this forum into a discussion about DCIS!

  • fmakj
    fmakj Member Posts: 1,278
    edited September 2010

    I was diagnosed with 2 microscopic foci of invasive cancer (0.6 cm and 0.4 cm) amongst a larger area of DCIS.  I was told that I have IDC and am TN.  I was refused Chemotherapy as I was told the risks outweighed the benefits in my case.  However, I will always be nervous about not having Chemo!  There are not many of us TN's that have not had chemotherapy that I know of.

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

    Mary Louise, were your invasive tumors 0.6cm and 0.4cm or 0.6mm and 0.4mm?  I ask because if the cm sizing is correct, then you have a T1a and a T1b tumor, which are not microscopic foci of cancer.  Most oncologists probably would recommend chemo for tumors that size, if they are triple negative.  Certainly the NCCN treatment guidelines suggest that chemo be considered for any tumor that is 0.6cm or larger. 

    But, if the tumors are 0.6mm and 0.4mm, then they are microscopic foci and then you'd be hard pressed to find any oncologist who would suggest chemo, even for someone who is triple negative or someone who is HER2+++.

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    Mary Louise,

    I was told I ah DCIS with microinvasion . I couldn't seem to find anyone who did not have chemo, so that is why I started this post. It is finally nice to see you also had no Chemo. May I ask if you had a sentinel node biopsy and if + or -. I even contacted ACC and they thought they found somenone but it turns out she also had chemo. A lot of women say they had the left breast may I ask what side was yours on?

    Ellie

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2010

    Ellie, thank you for the PM, feel free to contact me at any time.

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    why did you have a double mas for?

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2010

    I'd had 3 other lumpectomy biopsies since I was 21 and though they were all benign, I'd never had a mammogram that I wasn't called back for. That's 30 years worth! Then I had a breast reduction when I was 48 or so and had perfect perky breasts. That's a lot of breast surgeries. So when I had the diagnosis of cancer in front of me I said take them off. I didn't have recon for various reasons, but if I'd had one off, I would have done some sort of reconstruction.

    Keep asking Ellie!

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    Wow, now I understand it must of been a rough time for you all of those years. May God be with you. Well I am now finished with my radiation and time to get on with life. However I have changed my diet an awful lot for fear it may return, I pray not but better to be safe than sorry Yes? It is really nice to have someone to chat with. Where is Barrie,ON?

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2010

    Barrie is north of Toronto, Ontario. There is a big lake, Lake Simcoe that joins a whole bunch of other lakes with canals that you can travel quite far on. It is almost in "cottage country". We are moving to Alliston which is about 1/2 hour south to be closer to my kids who are having babies! It will be slightly closer to work, too.

    It's good to eat healthy, but don't deny yourself the things you enjoy in moderation. Any doctor will tell you that. Think of the ladies on the Titanic that didn't have desert!!!

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

    Ellie, something just occurred to me.  You mention that you haven't found many women who are TN who haven't had chemo.  Have you checked out the DCIS forum?  Although technically those of us with DCIS & a microinvasion are Stage I, most of us still tend to hang out in the DCIS forum.  I'll bet you'll find others there who have a microinvasion, are TN and haven't had chemo.  So if you are looking for others with the same diagnosis as you, that's probably where you are most likely to find them.

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    Yes I did Bessie and most of those women are Stage 0 and their er pr and her2 are + . I am a  Stage 1a and my rercptors are all -. I just would like to know my numbers for recurrence and also chances my other breast has at this point, along with has far out they are in being cancer free still.

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    Bessie, I would also like to add that there is no place where I can put the 1.2mm microinvasion on my diagnosis page so mine should read: DCIS > 1cm w/IDC microinvasion , Stage 1a ,Grade 3, 0/1 nodes ER-/PR-, HER2-.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013
    Ellie- have you checked out  www.tnbcfoundation.org ?
  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    Yes I will check it out, and register sometime today . Thank-you.

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    I checked it out and nothing so far, I think BC.org this site is much easier to use and better. But I won't give up just yet. I will keep searching until I find someone. Thanks hhfheidi.

    Elllie

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Ellie I agree with you about the two sites. I haven't been to the other one is months, but there is a lot of good stuff there specific to TNBC.

  • EllieH7
    EllieH7 Member Posts: 45
    edited September 2010

    I totally agree there, however one lady said people with my diagnosis and treatment are probably buried, the way she put it. So, I guess my search is ended and maybe someday someone will post and then I can answer them. Un til that time I give up looking on my own, as I said before reach and recovery with the ACC thought they found a match but somehow the information I gave got twisted cause when she called last Sunday night she also had Chemo. So like I said for now I give up. Thank-you for being my sister in BC and I still would like to continue chat with you., if thats ok with you.  Maybe in private message we can ask some things about ourselves such as marital staus and kids anf stuff like that.

    God Bless You,

    EllieLaughing

  • LRM216
    LRM216 Member Posts: 2,115
    edited September 2010

    Ellie:

    I am shocked beyond belief!  Please go back and re-read my post to you on the TNBC board as you have misread it completely.  I read your post there and you inserted into someone else's post.  You were asking for replies as soon as possible and I merely suggested that you move your post to a totally new thread for yourself - as I felt no one would find it BURIED in the thread you posted on.  PLEASE go back and re-read what I wrote as I would never in my life post anything as crass as how you interpreted it.  I am so sorry that you in fact got that from my post, as I cannot imagine how you did, but I was actually attempting to aid you in finding others that might have had a similar circumstance as you were asking.

    Linda 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Ellie- I went into the tnbc site and found the thread you posted in. You did misunderstand Linda. Do you know how to start a new thread in that site, as Linda suggested? Use the "Start a new topic" button.

    There are a lot of knowledgeable people in that site and if you post your question in a manner that they can see it (New Topic) you may get the answers you seek.

    It's worth one more try. Take care.

  • fmakj
    fmakj Member Posts: 1,278
    edited September 2010

    Beesie, I have pulled my path report out to make sure I was right in the size of the mass I had.  This is the final comment "The bulk of the lesion consists of DCIS, with a maximum dimension of 2 cm.  Two microscopic foci of invasive carcinoma are identified (0.6 cm and 0.4 cm)."

    Ellie, it is my right side. I did have a SNB and it was negative

    I am still VERY uncomfortable that I did not receive chemotherapy.  I have pushed for an MRI (getting that done in October) and I did get tested for BRCA 1 & 2 (both negative).  I have been advised to meet with the high risk ovarian clinic (in November) to look into getting and Ooph as I have a 2nd cousin who died of ovarian cancer at 39 and I am the 3rd one in my family with BC. 

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

    Mary Louise, next time you see your oncologist, you might want to ask about the statement "Two microscopic foci of invasive carcinoma are identified (0.6 cm and 0.4 cm)"  I have never heard of 0.6cm and 0.4cm tumors being described as "microscopic foci".  What a doctor would call a microscopic foci is usually 0.1cm (1mm) in size or less.  Personally I'd put more faith in the words "microscopic foci" than in the dimensions  - typing cm instead of mm is a pretty easy mistake.  If your invasive tumors were really 0.6mm and 0.4mm in size, then your treatment plan  - with no chemo - would make perfect sense.  And the whole sentence in your pathology report would make more sense too.  To say that "bulk of the lesion consists of DCIS" doesn't make any sense if the total size of the lesion is 2cm at it's largest dimension and there are two areas of invasion that total 1cm in size.  If that were the case, the bulk of the lesion would not be DCIS - the lesion would be split evenly between DCIS and IDC. 

    Something doesn't compute.  Getting your oncologist to explain might really ease your mind if it turns out that the invasive tumors were 1/10 the size that you've been led to believe.

  • fmakj
    fmakj Member Posts: 1,278
    edited September 2010

    Thanks Beesie, I will ask him next time I see him (in 6 months unless there is an issue with the MRI).  I just try to live each day without dwelling too much on it as there really is nothing that I can do at this point but move forward and stay on top of the screenings and any changes that I may notice!

  • Meggy
    Meggy Member Posts: 530
    edited October 2010

    If there is a gray area....I say go with the chemo.  It is so very doable.  It goes by so fast.  I felt so cleansed by it.  It isn't that bad.  Very doable.  For triple negatives....it works so well...it is our saving grace. 

  • EllieH7
    EllieH7 Member Posts: 45
    edited October 2010

    Meggy

    I decided no Chemo due to the size of the tumor and most of it was DCIS very small portion was IDC, I will sit back , change my diet, exercise more, try to worry less for the stress part and most of PRAY that the cancer does not return. We shall see in 6 month Mammo, in the meantime going to lot of appt.s with PCP, Surgeon, and Oncologist as well. Thank-you for your concerns.

    Ellie

  • HappyGirl45
    HappyGirl45 Member Posts: 85
    edited August 2013

    Not sure if I am on the correct topic to ask this question.  I am trying to understand my path report.  I do see where it states I am ER-/PR- but don't see where the HER2 results are...  Shouldn't that be on the path report?  Is it under some other initials?  There was a news article in the paper about the Triple Negative Breast Cancer, so it has me searching for my results.  Thanks for any help or guidance for this.

    Oops...now i see on this tread i wan't tested for HER2 due to it being DCIS.   

  • EllieH7
    EllieH7 Member Posts: 45
    edited October 2010

    Happy Girl

    Was there any sign of microinvasion or not? What did your oncologist suggest as far as treatment goes? I am just so curious, because I was told no Chemo for me.

    Ellie

  • HappyGirl45
    HappyGirl45 Member Posts: 85
    edited October 2010

    Ellie,

    This is all new to me... on the path report I only see DCIS, Grade 3, High grade with comedo necrosis.  Don't see anything saying "microinvasion".  I am scheduled for a NSMX (think I got that correct) and immediate reconstruction Oct. 13th.  Was not sent to an oncologist, was told chemo or rads are not required.  

  • EllieH7
    EllieH7 Member Posts: 45
    edited October 2010

    HappyGirl

    My best of luck to you. I just went with a Lumpectomy followed by 26 whole breast and 9 boosts of rads.

    Having some healing issues now seeing Rad Onc tomorrow morning to make sure no infection.

    God Bless

  • HappyGirl45
    HappyGirl45 Member Posts: 85
    edited October 2010

    Thank you Ellie.  Hope you get good news tomorrow. Keeping my fingers crossed for you

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