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Micro-invasive DCIS that is her2+++

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  • amyob
    amyob Member Posts: 56
    edited February 2010
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    Dear Liz,

    YES WE DID!

  • AnnaM
    AnnaM Member Posts: 136
    edited February 2010
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    You know, I really don't know if I belong here or not since my definitive diagnosis is Stage II.

    I had an iffy mammogram, followed by a surgical biopsy and an MRI biopsy. The diagnosis was widespread, high-grade DCIS. I then went in for a bilateral mx.

    After the mx the pathologist did numerous studies of my breast tissue because nothing could explain the 2 (out of 2) positive sentinel nodes on one side (R). They found a 1.5 mm microinvasion in one node and a slightly smaller one in the other node. My doctors thus diagnosed me with a 1.5 mm infiltrating ductal carcinoma on the right side, ER-, PR marginal and HER 2+++. The left side was diagnosed as DCIS with ER+ and PR+.

    I got chemo and one year of Herceptin. No hormone manipulation because the infiltration did not have positive hormone receptors.

    So, do I belong here?
  • ally1423
    ally1423 Member Posts: 183
    edited February 2010
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    i'm not sure if i fit into this category, but when i was first diagnosed with dcis, i had lumpectomy which was unsuccessful...the path report read 4 positive margins, high grade, and microinvasion, and a bunch of other stuff., no mention of her2, ....the bs explained to me that the microinvasion meant that the dcis had not quite left the duct, but was on it's way to leaving the duct.

  • laura347
    laura347 Member Posts: 58
    edited February 2010
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    Hi out there, it has been sooo quiet this weekend...just making sure everyone is okay?!

    Laura xo

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Yes, Laura A...OK here...weekends are super busy since my kids play alot of sports that require traveling throughout the northeast along with trying to work in between games and watching our busy 2 year old, who always finds trouble and broke our toilet yesterday.   If he's not watched 100+% he always gets into some kind of trouble. I definitely can't use the computer with him unless I let him do the typing for me.  I will try to respond a little later when I take a break from work. 

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Hi Anna-

    I'm a little confused by your diagnosis.  Please let me know if I understand your post correctly....you had DCIS and only a 1 1/2 mm of an invasive component that broke through you DCIS?  So, if you didn't have any positive nodes, you would have been at stage T1a?   

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Hi Ally-

    so you had microinvasive DCIS what was her2+++.  So ended up being at stage T1mic or T1a?  Do you know the size of your invasive component?   

    After my biopsy, I was diagnosed with high grade DCIS that was ER focally and weakly positive, PR-.  Then after my initial lumpectomy, I had one questionable margin so I had a re-excision to remove additional skin since my cancer was very close to the skin and fortunately no additional cancer found.  I ended with my margins being over 1cm all around along with additional skin removed to sure that that questionable margin was cleared as well.

    In the end, I was diagnosed at stage T1mic ("DCIS with a focus of less than 1mm of invasive carcinoma in its greatest dimension"), ER-,PR-, her2+++, node negative. Had 7 weeks of radiation and 2 years later I am being seen by one physician(rotating between surgeon, medical oncologist, radiation oncologist, primary) every 3 months.

    There are many interpretations on microinvasions that doctors use but cancer that is contained completely within the duct is DCIS which is at stage 0.  If the cancer broke through the duct then you are no longer at stage 0 since it is no longer contained. Hope that helps.

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Laura-

    how are you doing?  Please post whenever you need to.  Especially venting, questions, concerns.  

    Did you get my e-mail?

    xoxo Liz

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Ladies-

    I had a list of microinvasive DCIS members that were her2+++ but I noticed that many have not visited or no longer visit on this forum.  Some may have moved on and/or possibly no longer visit since we really did not have a place where we could truly connect until this forum index was started for us.  

    So far we've had a decent response but we have to keep in mind that we are a "rare bunch" so I don't expect as many members posting on this forum index as on some of the other fourms.  When I was initially diagnosed 2 years ago, I could not find anyone to connect with and almost all of those member who had microinvasive DCIS, did not know their her2 status.  After endlessly searching for a long time, I did end up connecting but it was very difficult to find someone.  This forum index was just started and we've already connected with several members.

    Members with our diagnosis are becoming more common.  A good example is when I do a search using "microinvasive" or "microinvasion" I am now able to find more members then I used to. 

  • amyob
    amyob Member Posts: 56
    edited February 2010
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    I thought it would be helpful to post this as a reference.

    The official staging rules are given on the NCI website:

     http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page4

    The American Joint Committee on Cancer (AJCC) working with the UICC (International Union against Cancer) are the authorities who make the staging rules.  The rules for breast cancer are copied below. 

    There can be seemingly conflicting staging information in a patient's record because each patient may have a clinical stage, a pathological stage, a stage group.  During the diagnosis and staging process new information may come up that leads to a change in the stage.  A doctor may overlook or downplay a minor factor that in fact affects the stage.  Each new edition of the staging manual makes (usually minor) changes in the classifications.

    Stage Information for Breast Cancer

    TNM Definitions
    AJCC Stage Groupings

    The American Joint Committee on Cancer (AJCC) staging system provides a strategy for grouping patients with respect to prognosis. Therapeutic decisions are formulated in part according to staging categories but primarily according to tumor size, lymph node status, estrogen-receptor and progesterone-receptor levels in the tumor tissue, human epidermal growth factor receptor 2 (HER2/neu) status, menopausal status, and the general health of the patient.

    The AJCC has designated staging by TNM classification.[1] This system was modified in 2002 and classifies some nodal categories as stage III that were previously considered stage II.[2] As a result of the stage migration phenomenon, survival by stage for case series classified by the new system will appear superior to those using the old system.[3]

    TNM Definitions

    Definitions for classifying the primary tumor (T) are the same for clinical and for pathologic classification. If the measurement is made by physical examination, the examiner will use the major headings (T1, T2, or T3). If other measurements, such as mammographic or pathologic measurements, are used, the subsets of T1 can be used. Tumors should be measured to the nearest 0.1 cm increment.

    Primary tumor (T)

    • TX: Primary tumor cannot be assessed
    • T0: No evidence of primary tumor
    • Tis: Intraductal carcinoma, lobular carcinoma in situ, or Paget disease of the nipple with no associated invasion of normal breast tissue
      • Tis (DCIS): Ductal carcinoma in situ
      • Tis (LCIS): Lobular carcinoma in situ
      • Tis (Paget): Paget disease of the nipple with no tumor.  [Note: Paget disease associated with a tumor is classified according to the size of the tumor.]
    • T1: Tumor not larger than 2.0 cm in greatest dimension
      • T1mic: Microinvasion not larger than 0.1 cm in greatest dimension
      • T1a: Tumor larger than 0.1 cm but not larger than 0.5 cm in greatest dimension
      • T1b: Tumor larger than 0.5 cm but not larger than 1.0 cm in greatest dimension
      • T1c: Tumor larger than 1.0 cm but not larger than 2.0 cm in greatest dimension
    • T2: Tumor larger than 2.0 cm but not larger than 5.0 cm in greatest dimension
    • T3: Tumor larger than 5.0 cm in greatest dimension
    • T4: Tumor of any size with direct extension to (a) chest wall or (b) skin, only as described below
      • T4a: Extension to chest wall, not including pectoralis muscle
      • T4b: Edema (including peau d'orange) or ulceration of the skin of the breast, or satellite skin nodules confined to the same breast
      • T4c: Both T4a and T4b
      • T4d: Inflammatory carcinoma

    Regional lymph nodes (N)

    • NX: Regional lymph nodes cannot be assessed (e.g., previously removed)
    • N0: No regional lymph node metastasis
    • N1: Metastasis to movable ipsilateral axillary lymph node(s)
    • N2: Metastasis to ipsilateral axillary lymph node(s) fixed or matted, or in clinically apparent* ipsilateral internal mammary nodes in the absence of clinically evident lymph node metastasis
      • N2a: Metastasis in ipsilateral axillary lymph nodes fixed to one another (matted) or to other structures
      • N2b: Metastasis only in clinically apparent* ipsilateral internal mammary nodes and in the absence of clinically evident axillary lymph node metastasis
    • N3: Metastasis in ipsilateral infraclavicular lymph node(s) with or without axillary lymph node involvement, or in clinically apparent* ipsilateral internal mammary lymph node(s) and in the presence of clinically evident axillary lymph node metastasis; or, metastasis in ipsilateral supraclavicular lymph node(s) with or without axillary or internal mammary lymph node involvement
      • N3a: Metastasis in ipsilateral infraclavicular lymph node(s)
      • N3b: Metastasis in ipsilateral internal mammary lymph node(s) and axillary lymph node(s)
      • N3c: Metastasis in ipsilateral supraclavicular lymph node(s)

    * [Note: Clinically apparent is defined as detected by imaging studies (excluding lymphoscintigraphy) or by clinical examination or grossly visible pathologically.]

    Pathologic classification (pN)*

    • pNX: Regional lymph nodes cannot be assessed (e.g., not removed for pathologic study or previously removed)
    • pN0: No regional lymph node metastasis histologically, and no additional examination for isolated tumor cells (ITC)

       [Note: ITCs are defined as single tumor cells or small cell clusters not larger than 0.2 mm, usually detected only by immunohistochemical (IHC) or molecular methods but that may be verified on hematoloxylin & eosin (H&E) stains. ITCs do not usually show evidence of malignant activity, e.g., proliferation or stromal reaction.]

    • pN0(i-): No regional lymph node metastasis histologically, negative IHC
    • pN0(i+): No regional lymph node metastasis histologically, positive IHC, and no IHC cluster larger than 0.2 mm
    • pN0(mol-): No regional lymph node metastasis histologically, and negative molecular findings (RT-PCR)**
    • pN0(mol+): No regionally lymph node metastasis histologically, and positive molecular findings (RT-PCR)**

      * [Note: Classification is based on axillary lymph node dissection with or without sentinel lymph node (SLN) dissection. Classification based solely on SLN dissection without subsequent axillary lymph node dissection is designated (sn) for sentinel node, e.g., pN0(I+) (sn).]

      ** [Note: RT-PCR: reverse transcriptase-polymerase chain reaction.]

    • pN1: Metastasis in one to three axillary lymph nodes, and/or in internal mammary nodes with microscopic disease detected by SLN dissection but not clinically apparent**
      • pN1mi: Micrometastasis (larger than 0.2 mm but not larger than 2.0 mm)
      • pN1a: Metastasis in one to three axillary lymph nodes
      • pN1b: Metastasis in internal mammary nodes with microscopic disease detected by SLN dissection but not clinically apparent**
      • pN1c: Metastasis in one to three axillary lymph nodes and in internal mammary lymph nodes with microscopic disease detected by SLN dissection but not clinically apparent** (If associated with more than three positive axillary lymph nodes, the internal mammary nodes are classified as pN3b to reflect increased tumor burden.)
    • pN2: Metastasis in four to nine axillary lymph nodes, or in clinically apparent ** internal mammary lymph nodes in the absence of axillary lymph node metastasis to ipsilateral axillary lymph node(s) fixed to each other or to other structures
      • pN2a: Metastasis in four to nine axillary lymph nodes (at least one tumor deposit larger than 2.0 mm)
      • pN2b: Metastasis in clinically apparent* internal mammary lymph nodes in the absence of axillary lymph node metastasis
    • pN3: Metastasis in ten or more axillary lymph nodes, or in infraclavicular lymph nodes, or in clinically apparent* ipsilateral internal mammary lymph node(s) in the presence of one or more positive axillary lymph node(s); or, in more than three axillary lymph nodes with clinically negative microscopic metastasis in internal mammary lymph nodes; or, in ipsilateral supraclavicular lymph nodes
      • pN3a: Metastasis in ten or more axillary lymph nodes (at least one tumor deposit larger than 2.0 mm); or, metastasis to the infraclavicular lymph nodes
      • pN3b: Metastasis in clinically apparent* ipsilateral internal mammary lymph nodes in the presence of one or more positive axillary lymph node(s); or, in more than three axillary lymph nodes and in internal mammary lymph nodes with microscopic disease detected by sentinel lymph node dissection but not clinically apparent**
      • pN3c: Metastasis in ipsilateral supraclavicular lymph nodes

    * [Note: Clinically apparent is defined as detected by imaging studies (excluding lymphoscintigraphy) or by clinical examination.]

    ** [Note: Not clinically apparent is defined as not detected by imaging studies (excluding lymphoscintigraphy) or by clinical examination.]

    Distant metastasis (M)

    • MX: Presence of distant metastasis cannot be assessed
    • M0: No distant metastasis
    • M1: Distant metastasis

    AJCC Stage Groupings

    Stage 0

    • Tis, N0, M0

    Stage I

    • T1*, N0, M0

    Stage IIA

    • T0, N1, M0
    • T1*, N1, M0
    • T2, N0, M0

    Stage IIB

    • T2, N1, M0
    • T3, N0, M0

    Stage IIIA

    • T0, N2, M0
    • T1*, N2, M0
    • T2, N2, M0
    • T3, N1, M0
    • T3, N2, M0

    Stage IIIB

    • T4, N0, M0
    • T4, N1, M0
    • T4, N2, M0

    Stage IIIC**

    • Any T, N3, M0

    Stage IV

    • Any T, Any N, M1

    * [Note: T1 includes T1mic.]

    ** [Note: Stage IIIC breast cancer includes patients with any T stage who have pN3 disease. Patients with pN3a and pN3b disease are considered operable and are managed as described in the section on Stage I, II, IIIA, and operable IIIC breast cancer. Patients with pN3c disease are considered inoperable and are managed as described in the section on Inoperable stage IIIB or IIIC or inflammatory breast cancer.]

    References

    1. Breast. In: American Joint Committee on Cancer.: AJCC Cancer Staging Manual. 6th ed. New York, NY: Springer, 2002, pp 171-180. 

    2. Singletary SE, Allred C, Ashley P, et al.: Revision of the American Joint Committee on Cancer staging system for breast cancer. J Clin Oncol 20 (17): 3628-36, 2002.  [PUBMED Abstract]

    3. Woodward WA, Strom EA, Tucker SL, et al.: Changes in the 2003 American Joint Committee on Cancer staging for breast cancer dramatically affect stage-specific survival. J Clin Oncol 21 (17): 3244-8, 2003.  [PUBMED Abstract]
  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Awesome Amy Laughing
  • laura347
    laura347 Member Posts: 58
    edited February 2010
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    Hi Amy, okay I really enjoyed my giggle thinking of you doing Jane Fonda...It's a really good idea...I think I am going to copy you...I did her stuff years ago and hey why not a Jane Fonda rebirth!! Thanks for your e-mail..only certain people get it, wish I weren't in this elite club, but oh well. Also Liz, I did get your e-mail..Thanks! I get the whole running kids around all weekend, we have one in baseball and one in soccer.It's crazy but we love it. Hey I wanted to ask you guys..anyone , what were you ki67 #s and how relevent do you feel they are with our diagnosis?? Just curious

    Laura xoxo

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Hey Laura-

    with the sports, the traveling takes so much time but it is fun and you actually end up having an extended "sports family". 

    As far as the Ki-67....I did not have the Ki-67 test done, I think(?) that was the test I was told that I did not have enough of an invasive component to have done and I think(?) for that test, for me... that with such a tiny microinvasion it really wasn't relevent.  Did any of you have it done?   

    xoxo, Liz

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Amy-

    with my bad hip....I've actually thought of trying "Sweaten to the Oldies" with Richard Simmons Innocent

    Jane FondaCool is groovy next to Richard Simmons Innocent

  • laura347
    laura347 Member Posts: 58
    edited February 2010
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    Hi Liz, yeah they said mine was 10..I don't know, maybe it doesn't really mean much here. And I agree, I think fonda is HIP compared to simmonsSmile hee hee...anything to get that blood flowing!

    Laura xo

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Laura,

    I've always been active and my primary exercise has been running/brisk walking, hand weights, toning, a little belly dancing etc.  After reading numerous articles about how great yoga is, I decided to try it and guess what.....now my hip has been hurting for a few months.  I've had an MRI which shows a little wear and tear but nothing that should be causing this much pain and the frustrating part is that nobody seems to know how to help me Yell.  So.... I just live with it Undecided

  • sherry7
    sherry7 Member Posts: 5
    edited February 2010
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    Hello and Thank you to the operators that put a forum in for us RARE BIRDS.  I also four years ago was dx'd with DCIS, barely ER, neg. PR and possitive HER2+++.  Now that we have this forum, What does this mean for my future, my risks, expectations etc.  I did not do chemo, I tried tomaxefin and got off in four months, too many horrible side affects.  I would love to know what this diagnosis really means...I had a right side simple mastectomy with reconstruction.  Developed lymphedema six months after mast.  Go figure...Sherry

  • Liz08
    Liz08 Member Posts: 100
    edited February 2010
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    Welcome Sherry!

    So glad you found us "Rare Birds", I actually use that term often...lol

    Skimming a few of your most recent posts you've been through some tough times but looking at your join date, you'll soon be celebrating 5 years which is wonderful!    You stated that you had DCIS which was her2+++, did you also have a microinvasion?  

    I love your dog pic,  Great Dane? Beautiful colors.  

    xoxo,

    Liz

  • laura347
    laura347 Member Posts: 58
    edited February 2010
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    Hi Sherry, You are so welcome here, it is a place of comfort...I am just starting my journey and been helped along by women on this forum...I too baby my arm...I am afraid to sleep on it a night for fear it will go to sleep and cut off circulation...I had 4 nodes on left side and for kicks one on right taken out, I worry of lymphedema...Again we are glad to have you....did you have microinvasion?

    Laura xo

  • amyob
    amyob Member Posts: 56
    edited February 2010
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    I just love the light-hearted feel of this thread!

    Richard Simmons??  Thinking about him makes me laugh, and then again, I also remember how loving and inspirational he was, too :)  Liz!  Belly Dancing??!!  I think it may be time for a LizM Video... I bet it would blow Jane Fonda out of the water!  

    Hi Laura - I didn't have the Ki-67 test, either.  Isn't that the one that shows how "on the move" things are?  I hope your score is a good one:)  I know I've seen some other posts about the test, but I can't remember and I'm too darn lazy to look it up.  FYI - Before doing the Jane Fonda, be sure to apply LOTS of blue eyeshadow, tease your hair 'til it's nice and poofy, and don't forget the hairspray!! 

    Hi Anna, Ally, and Sherry - I'm not clear whether you all have DCIS with a microinvasion of 1 mm or less that is Her2+++, but you certainly are welcome here.  Each of us has learned so much since our diagnosis and it helps to bounce things off of each other.  We may or may not be able to help, since we are not all in the same boat, but it never hurts to try. 

  • amyob
    amyob Member Posts: 56
    edited February 2010
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    PS  -  My arm started falling asleep at night a few weeks after my bilateral mastectomy.  Now I'm doing arm circles every day and it doesn't happen anymore.  May be worth a try...

  • laura347
    laura347 Member Posts: 58
    edited February 2010
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    Amy, did you get my PM or did I mess it up??Frown Let me knoe and I will resend

    L xo

  • laura347
    laura347 Member Posts: 58
    edited February 2010
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    Liz, I think that stinks about your hip..it makes me wonder what you could do?! I always thought that yoga was suppoed to be so awesome. i have been doing the brisk walking every day..gonna bump it up a notch soon from one to two miles...trying to get back in the groove. I think my husband would enjoy the belly dancingLaughing! But seriously I do think it is the best thing you can do for yourself after diagnosis...move around!! FYI..I have been thinking(dangerous) I think Her2 is an ugly word...what do you thinkWink

    Laura xo

  • amyob
    amyob Member Posts: 56
    edited February 2010
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    Liz,  have you tried physical therapy?  I am finishing my 4th week because of the shoulder and neck pain I've been having.  For me, it's part arthritis and part work-related (and probably part surgery-related).  They have me on a machine that stretches out my spine.  Can't remember what it's called exactly, but I call it the decompressor.  It's actually helping! 

       

  • ally1423
    ally1423 Member Posts: 183
    edited February 2010
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    thanks liz and amy....after my unsuccessful lumpectomy, and lcis in the other boob, i ended up with b/l mx, and b/l  sn biopsies. final path report revealed dcis in the right and lcis in the left. no invasive ca, no further treatment is required, however if my lumpectomy was successful i would have had rads and meds. i still would have preferred just the lumpectomy, however resection would have left me very deformed (small breasted) , and it still might not have been successful....liz that's great your resection was successful. mx is alot to go through.....i would have been happy to do what you are doing...being checked every 3mos. you're right about the different interpretations of stage 0. when my bs said mx, i nearly fell off the chair, i didn't understand why i would need that when i've known people with stage 1 and 2 that have had lumpectomies, but i know now every individual case is so different....i'm glad you're doing well after 2 yrs....thanks, i guess i do belong on this thread. i've been very active on the "one step alloderm" thread because that was the type of reconstruction that i've had.....the support on that forum has been amazing....

  • AnnaM
    AnnaM Member Posts: 136
    edited February 2010
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    No, Liz, I had two positive nodes out of two. The nodes were where they found the micrometasisis. They studied the breast slides three times and couldn't find anything there. They told me I was Stage IIa (T1mic, N1, M0).

  • Somuch
    Somuch Member Posts: 21
    edited February 2010
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    All the info found here has been most helpful. I guess I am a T1mic. DCIS ER-/PR-w/microcalsifications and just a few invasive cells that were 100% HER2+. Had my third infusion of Herceptin on Monday and sure felt tired today and just a bit achey.  I wonder if they did it slower - an hour instead of 30 min if there would be even less side effects. Walking while listening to the oldies 60's & 70's works for me. My DH and I purchased bikes for valentines day and are trying to do a lot of riding, up to 8 miles!! a friend is trying to get me to try a Zoomba class, its all shaking and grinding, then she told me about the advanced class...pole dancing!Surprised What do you think?

  • Dejaboo
    Dejaboo Member Posts: 761
    edited February 2010
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    I find it very interesting that most of the Mircoinvasive with DCIS that are Her2+ Are ER/PR-

    or ER+ with Low % PR-  ( I am ER 18%, PR-)  (my DCIS was ER/PR-)

    Pam

  • amyob
    amyob Member Posts: 56
    edited February 2010
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    Hi Pam :) 

    My DCIS was 10%ER and 5%PR.  My IDC was 20/20%.  I thought I remembered reading somewhere that if your % is in the single digits, they usually don't consider it positive and automatically categorize it as negative.  I wonder if the PR is usually lower by comparison in other diagnosis.  PS -  Can you teach us how to edit diagnosis in our profile?

    Amy   

  • Dejaboo
    Dejaboo Member Posts: 761
    edited February 2010
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    Hi Amy,

       I think most Drs do Consider it negative if it is below 10%.  I pretty much think of mine as negative.   Since I read alot about Her2+ Not responding well to Tamoxifen 9sorry- I dont have any links off hand)

    I Keep my 'Diagnosis' Private...And wrote up my own Diagnosis under my Profile...I listed my DX on my 'Signature' line ...Since none of the things to choose from really worked for me under DX (does that make sense?)

    Pam

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