Microinvasive DCIS with Her2 +, ER- and PR-

Laura-

I'm confused by your question?  It's dinner time here but if you can elaborate on your question and I will try to check back later tonight or some time tomorrow.

Laura-

right now we have a relative visiting from Colorado Springs and have been researching the area too.  We are fed up with taxes constatnly going up but wages dropping and not much work (we are self employed) . Where did you live?   

Laura- what I learned after having a cancer diagnosis, is that you are not longer given any type of guarantee, no matter what treatment you have. You can still recur and it will never be a 100% guarantee.  This is what I found most difficult to accept, when I was 1st diagnosed 2 years ago.  But this is the reality and fortunately as far as cancer is concerned, we do have an excellent prognosis, althought not a 100%.  A way of looking at it is do you have a guarantee that you won't get hit by a car or truck the next time you go out? How do you know you won't get mugged?   Life never has any guarantees and that's just the way life works .Acceptance is important!

I'm not an oncologist and to the best of my knowledge non of us who have posted in this thread are.  My advice is to seek out at least 3 opinions or more and go with the majority and  most importantly follow your heart. Even if all the oncologists' recommend no further treatment, you may decide that you want treatment, you are entitled to that choice.  And no doctor will deny you that, for fear of a law suit.  From what I have read/seen is that those that have truly microinvasive DCIS (1mm or less of a microinvasion) and have clean nodes, including no vascular invasion have not been recommended chemo/Herceptin.  Cancer is a crap shoot and nothing is ever guaranteed, you have to make a decision that you can live with and not look back. It does get easier with time, I promise.  When I was diagnosed at the age of 38(no family history and I'm the youngest of 6 girls) with my youngest being only 8 months old, I thought that I would not be around look enough to see him walk(based on what I read on the web!).

They've only started testing for her2 in the last few years, so in reality we don't really know how many true microinvsive DCIS long term survivors there are.    Other than the study which said that we have an excellent prognosis - I e-mailed you, I am unaware of any other recent studies (because we are such a rare bunch) that specifically addresses those of us who had a 1mm or less of a microinvasion and had clean nodes (pNO).  Microinvasive DCIS does have an excellent prognosis and most of the time DCIS is her2+++.

Aditionally, my advice is to keep your own medical record file, biopsy, surgery pathology, mammograms, MRI's, all blood work etc.  Always get a copy for yourself from now on.  Please reach out and throw your questions at us.  I recall when I was diagnosed I could not find anyone with exactly the same diagnosis and I felt like a misfit but lately more have come forward.  My surgeon and oncologists have told me that our diagnosis is not common and we are in class by itself.

Sending (((hugs))) your way,

Liz 

I think Laura is confused because, by definition, Stage 1 (in our case T1mic) has NO lymph node involvement and May had a micrometastasis (N1a) - although her report shows (N0).  I can't understand it myself.  Perhaps, Liz, since your friend was also considered Stage 1(T1a) and had a micro met, this is not considered serious enough to merit Stage 2.  In any case, Laura, I think our flags went up when we read May's story.  We do need to use our emotions as tools, I believe.... to jump into action, to consider carefully, etc...    As May suggested, we need to stay on top of the game and stay informed.  That was her intention.  This was a good reminder for us.  For now, I'm comfortable with the fact that I got opinions from very reputable doctors in this field.  I think we have every reason to believe that we are going to beat this and the odds are very, very good!      

EDIT - May,  I am sorry for the confusion about (N0).  You clearly wrote N0 (i+) and after reading redsox's post later in this thread, I realized this is not considered metastasis or N1a.      

Hi guys, Amy and Liz....wanted to let you know...one of the oncologists that was looking at my case, went in front of the tumor board...every single doctor agreed...no further treatment!! I thought you would want to know. Also, Liz we moved because of similar reasons...we also are self employed and 911 did not help my frame of mind...I was in and out of N.Y. from Jersey everyday. If you have any question regarding move...maybe there is a way we could connect

Laura

Daisy-

 I was told that the greatest risk of recurrence for aggressive cancers such as those that are Her2+, grade 3 etc are the 1st 2 years since they are very fast growing after that the risks start dropping.  With less agressive cancers it's the oppostie, since they are slower growing.  

Daisy, as I've said before, I am no longer writing for your benefit but more for others who may be reading this.  There is no such thing as DCIS Stage I and I wouldn't want anyone else to think that there is. Honestly, I wish I didn't have to continue to make this point either.

You're right - I'm not a doctor.  But my diagnosis was DCIS with a microinvasion and I had it explained to me by two surgeons and an oncologist, and they all explained it the same way.  I've also been reading up on DCIS and breast cancer in general ever since I was diagnosed and I have never once read that there is such a thing as DCIS Stage I - and believe me, after some of our previous exchanges, I have searched long and hard to try to find any reference to DCIS Stage I.  Everything I've read about DCIS is consistent.  Pure DCIS is always stage 0.  DCIS with a microinvasion is a separate diagnosis and it's Stage I because of the presense of that tiny amount of invasive cancer.  I have not asked you to take my word for it; in the past I have provided you with at least a half dozen quotes and links from very reliable sources (NCCN, NIH, ACS, etc) that confirm what I (and many others here) have explained to you, but you continue to believe that I (and the many others here) am wrong.  Just as you are free to believe whatever you will, I am free to continue to correct any misstatements for the benefits of others with this same diagnosis. 

As for recurrence, as I understand it, for early stage BC, the greatest factors in local (in the breast) recurrence are margin size and grade, and then hormone status. Stage (and again, hormone status) plays a significant role in recurrence risk when it comes to distant (outside of the breast) recurrence.

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]

As you can see microinvasion is T1 classification and Stage Group 1.

Hi-

for those who had microinvasive DCIS that was her2+++, as of this afternoon we have our forum index (thanks to the moderators!).  Please feel free to post there. We can finally connect! The forum index is called Micro-invasive DCIS that is Her2+++.  Thanks!  Liz