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All TopicsForum: Micro-invasive DCIS that is HER2 positive → Topic: Micro-invasive DCIS that is her2+++

Topic: Micro-invasive DCIS that is her2+++

Forum: Micro-invasive DCIS that is HER2 positive — Meet others with this diagnosis.

Posted on: Feb 15, 2010 09:35PM, edited Apr 28, 2010 04:03PM by Liz08

Liz08 wrote:

By clinical definition a true microinvasion is "IDC(Invasive Ductal Carcinoma) that is 1mm or less in its greatest dimension".

As requested a separate forum index for those of us who had true Micro-Invasive DCIS that was her2+++.  Yes, we are a rare bunch but lately there have been a few more of us that joined BC.org and weren't able to connect with each other since there was no specific forum for us. We really don't belong in the Her2+++ forum since almost all of those who have been diagnosed with micro-invasive DCIS that were her2+++  and node negative have not received chemo/herceptin. 

And since we are no longer stage 0 we don't really belong with the DCIS forum either. 

I along with at least one other member who I regularly correspond with have been told that micro-invasive DCIS that is her2+++ is a separate category from those who have IDC that is her2+++.   At this time there have not been many studies pertaining specifically to our diagnosis. 

Having our own forum will definitely allow us to connect much easier.  If you know of any members that fall in this category please encourage them to post post their stories and reach out to us. I am so happy the moderators did this for us.Thank you to the moderators!!!!

Edited: to add clinical definition of microinvasion. 

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Jan 31, 2012 12:39PM alliesmom15 wrote:

I am just wondering for those of you that are DCIS with Microinvasion and HER22+++ that did not do any chemo, RADS or Tamox, how often do you see your Drs and or Onc?  Do you reiceve any bloodwork?  Who do you see most, GP, Surgeon, PS or ONC??  I dont want to get lost in the shuffle of them all.  I am going to see my ONC one time a year but dont know what I should be doing in the in between stage, if anything.

 Thank you! 

Jen

Dx 5/21/2011, DCIS, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 31, 2012 12:40PM, edited Jan 31, 2012 12:40PM by alliesmom15

This Post was deleted by alliesmom15.

Jen

Dx 5/21/2011, DCIS, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 31, 2012 04:14PM Dejaboo wrote:

I saw my Onco for 2 years. 1st every 3 months, then 4 months & then They were pushed out to 6 months & that is when I decided not to go back

I saw my GP in between for a yearly check up

My Onco didnt do tumor markers or scans...She just asks me how I feel & does a bad breast exam ( I can do one better then her)  Then she tells me if I have any symptoms to make an appt.

after my last check up almost 2  years ago I decided to skip seeing her anymore.   if I have symptoms that arrise I wil make an appt.

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Aug 3, 2012 12:09PM Momof3girld wrote:

I just had a double masectomy a few weeks ago for Dcis with her2 positive micro invasive cancer, the largest being .5mm. Two different opinions showed two different answers. One said to have chemo (TC) for 4 rountannin 12 weeks and herceptin for 1 yr for fear of it spreading later in life. I am only 35 but lost 6 family members to breast cancer and my mom Has metastatic breast cancer. They said the slides showed it "sprouted" in many areas microinvasively. The other thinks that is excessive and said I could do herceptin due to my age and family history. These are both top hospitals from NYC. I am so confused and am considering A third opinion. They both give me a good success rate but I know how aggressive her2 positive is if it came back. I have three little girls 6 and under and want to be around for them. I'm scared of the side effects of chemo, but also scared of the aggressiveness of cancer. Ugh!!!

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Aug 3, 2012 12:52PM chachamom wrote:

Momof3girld: I'm so sorry you are in this situation!!! You will find lots of support and information here. You don't say if you are ER/PR +. If you are, you may want to join the TRIPLE POSITIVE thread. It's very active and very informative. You are in a very difficult time right now, but please know that it WILL get better, especially when you come to tour own decision on treatment.......get a third and even more opinions until you feel confident in your decision.....then, "fight like a girl!". I pray you have a strong support system where you live! Blessings!

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm

Dx 3/12/2012, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2+Surgery 04/03/2012 Mastectomy (Right)Hormonal Therapy 05/30/2012 TamoxifenSurgery 11/09/2012 Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Surgery 10/07/2013 Reconstruction: Nipple reconstruction (Both)
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Aug 3, 2012 01:03PM Beesie wrote:

Mom, was your largest microinvasion really just 0.5mm?  Not 0.5cm or 5mm?  I didn't think that they could test for HER2 status on something as small as 0.5mm.  If your microinvasion really was that small, you should check to see if it was actually the invasive portion that was checked for HER2 status or the DCIS.  If it was the DCIS that was tested, then it's not surprising that you are HER2+, since about 40% of DCIS is HER2+, whereas only about 15% - 20% of IDC is HER2+.  Hormone status, including HER2 status, can be different in IDC vs. DCIS, even within the same tumor.  I don't think it happens often but it can happen. 

This thread hasn't had much activity lately but there are a couple of other threads on the board where the women with very tiny HER2+ invasive tumors have been hanging out.  You might get some good information from these threads and you'll be able to connect with others who've had a similar diagnosis to you, and who've had to make the same hard decision about chemo. 

 Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

 Topic: < 5 mm HER2+ IDC...why NOT chemo??? 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Aug 3, 2012 07:12PM Momof3girld wrote:

Yes it is .5mm which I know is very small. They give me a 90percent survival rate but I'm still so scared. The Dcis was very long with her2 positive in it that was micro-invasive. I am torn. If I don't do chemo I'll kick myself later possibly, but I'm so scared it will hurt me.

I will check out the other sites that were mentioned.

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Aug 9, 2012 01:31PM Teri060811 wrote:

I'm so confused about all this.  My path report states, "although there is no diagnostic/unequivocal evidence of invasion, several free-floating fragments of ductal carcinoma with low to intermediate grade nuclei are identified which are not associated with underlying stroma.  It cannot be determined for certainty whether these fragments are obtained from an in-situ or invasive carcinoma.  Futhermore, the prognostic marker results demonstrating a Her2-neu postive, ER and PR negative proflie would be rather unusual for a conventional low grade ductal carcinoma in-situ.

Does this mean that the cancer may have spread?  Or since I'm having a BMX does if get rid of it all? 

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Aug 9, 2012 02:03PM Teri060811 wrote:

kawee-

I also have Lupus.  Luckily, mine has been inactive for years.  I'm worried that the stress of all this will cause a flare -up.  I've been much more achey and tired and have been having hot flashes but it could just be the stress.  So, are the doctor's recommending that you stop the hrt and just watch the DCIS?  I am having a BMX next month. 

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Aug 9, 2012 07:38PM Alicethecat wrote:

Hi Mom of 3

I had grade 3 DCIS HER2+ and IDC grade 3 DCIS HER2+.

My oncologist said that in his opinion, HER2+ trumps everything, so I am in the process of having the full works - surgery, chemo, radiation and Herceptin.

Chemo is doable. Please don't let fear put you off from having it. I had 4 X FEC and 4 x Taxotere and although I had a few side-effects I am here to tell the tale.

Good luck to you!

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR+, HER2+Surgery 02/07/2012 Mastectomy (Right)Chemotherapy 03/12/2012 Cytoxan, Ellence, fluorouracilChemotherapy 06/08/2012 TaxotereChemotherapy 07/02/2012 TaxotereTargeted Therapy 07/19/2012 HerceptinChemotherapy 08/17/2012 TaxotereRadiation Therapy 10/03/2012 External
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Aug 11, 2012 09:50AM Pointvalue wrote:

Hi Teri,

I was reading your thread. I had a pbmx on Tuesday the 7th. I came home Thursday evening. I am doing well. I had no problems wiping after a bm. My doctor prescribes milk of magnesium to help with constipation. I also used a hand held shower head to freshen up down there. I took my first shower a day after surgery. I removed the surgical bra and pinned my drains on a bath towel wrapped around my neck. This covered my implants. I carefully washed my hair with Johnson's head to toe wash. The towel around my neck helped to absorb the water from touching my skin. I gently patted my front and put the surgical bra back on. The shower will make you feel great. I am sleeping on an L shaped couch. I have my head propped up in the corner with pillows. The couch is low to the ground and easy for me to get up and move around. I hope this helps.
Xo
Elise

Surgery 08/07/2012 Prophylactic Mastectomy (Both)Surgery 11/08/2013 Prophylactic Ovary Removal (Both)
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Sep 10, 2012 09:20PM, edited Sep 10, 2012 09:33PM by Luis_818

My wife had her breast cancer: She had received mastectomy(right) on 4 May, 2012 in the local hospital. The mecical examination result is DCIS, ER(-), PR(-), Her2/neu(-),0/19 lymph node. The doctor didn't think she should receive chemo. However, the authorized big hospital re-examined and gave the different results: Microinvasive localized breast cancer (high grade), ER(-), PR(-), Her2/neu (3+). The doctor suggested that she should receive chemo (EC) and herceptin. About 90 days after the surgery, on August 5, 2012, she began to receive chemo.Now she is still receiving chemo.It's time we should decide whether she should receive herceptin or not. We are searching the Internet for any information about it. We are very happy to find your forum. Would you please help us to decide whether it is necessary to receive the treatment with herceptin. By the way, is the treatment with chemo 90 days after the surgery effective? Thank you for your answer.

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Sep 12, 2012 10:38PM, edited Sep 12, 2012 10:39PM by Luis_818

Liz08:

    I submitted my request a few days ago. I am eager to receive a reply. However, a few days have passed, nobody has sent a reply. Liz08, can you help me?

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Sep 12, 2012 10:57PM Beesie wrote:

Luis, I just saw your post.  Sorry that no one has responded so far.  This forum is not very active and I'm not sure when Liz was last on the board.

There is another forum on this board where you will find a lot of women who are in your wife's situation.  It's the HER2/neu Positive Breast Cancer forum.  And here is one of the discussion threads in that forum that specifically discusses very small HER2+ tumors and the treatment plan:  

Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

I'm sure you will get a lot of good advice if you post your questions in that forum! It's much more active there than it is here.  

 

 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Sep 13, 2012 07:37AM Luis_818 wrote:

Thank you, Beesie. I'll refer to the forum you mentioned.

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Nov 15, 2012 10:58PM heather_canada wrote:

Hi there,

This is wonderful to read about other women in the same circumstance.  I am 36 and just completed a bilateral mastectomy.  The tumour was microinvasive (10 locations less than 1 mm).  It was recommended that I just have radiation, which I have just started.  I am Her 2 + (95% staining so grade 3).

It was not recommended that I have chemo.  I asked about just taking Herceptin and I was told this is not allowed in Canada.  Does anyone have any information/studies about taking Herceptin without chemo??

Thanks!!

Heather

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Nov 15, 2012 11:05PM heather_canada wrote:

I had the same circumstance...what did you end up deciding?  How are you doing with your decision?

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Nov 18, 2012 10:01AM amyob wrote:

Hi Heather,

It has been a while since I've been on the board.  It has been 3 years since my diagnosis.  I was 40 and also had a bilateral mastectomy.  I had 4.5 cm of DCIS and 1 microinvasion of IDC, less than 1 mm.  I did not have further treatment and I think that chemo and herceptin are not usually suggested for people with microinvasions less than 1 mm, even if they are Her2+, grade 3.  I am sorry that I don't have the latest information on whether Herceptin is available without chemo, but I'm sure you can find that on the board somewhere.  Maybe you could try searching "herceptin without chemo".  I hope this helps a little.  ~Amy

Dx: 9/19/09, Stage T1mic, DCIS, < 1mm microinvasion, ER+/PR+, Her2+, 0/2 nodes

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Nov 18, 2012 01:38PM alliesmom15 wrote:

 I am the same as Amy, with a pretty close DX.  I opted for no treatments as well.

My first onc suggested one year of just Herceptin alone or 6 months with Chemo.  

I had 3 different opinions and went with the majority.

Jen

Dx 5/21/2011, DCIS, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Nov 27, 2012 03:26PM zappons wrote:

HI, I think I belong in this group, as I have DCIS mi, HER2 +++

But, just discovered I also have an invasive cancer that is ER+. Where does that put me?

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Nov 27, 2012 04:40PM Beesie wrote:

Zappons, do you have two different areas of cancer?  Or cancer in each breast?  Or is the invasive cancer a second diagnosis, sometime after the first?  Is the invasive cancer also HER2+++? 

Our diagnosis, staging, treatment and prognosis is always based on the most serious of our conditions.  So since you have invasive cancer, that trumps DCIS and DCIS-Mi (I'm assuming that the invasive cancer that you've mentioned is more than just the microinvasion that was found as part of the DCIS). Other than removing the DCIS, the assumption is usually made that the DCIS will be adequately treated by any treatments you have for the invasive cancer.  In your case, however, if in fact you have two completely separate diagnoses, and one is HER2+++ and the other isn't, that could change things.  But as has been noted in this thread, usually Herceptin is not recommended for those whose HER2+++ cancer is only a microinvasion. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 17, 2013 10:20PM CameraKim wrote:

Hi ladies, I wanted to introduce myself here as I think this is where I belong...finally....after 5 LONG months.

I found my lump in September and the rollercoaster ride began. After ultrasounds, MRIs, PET scans, we thought my tumor was about 3.5 cm. The preliminary biopsy came back as DCIS with a micro-invasion and we also found one axilla lymph node positive.

The PET scan also showed a 2cm lesion of some kind on a rib and the doctors didn't know what to think. They didn't think it was a met, but they couldn't totally rule it out until after chemo. We decided to go ahead with neoadjuvant chemo since I was Her2+++ and I had an infected lymph node.

I finished the AC/T regimen and proceeded to have an MRI which showed no life in tumor or nodes, and the lesion on my rib was grossly unchanged. That led my doctors to believe the spot on my rib was benign. I had a lumpectomy and sentinel node biopsy. The pathology report came back as a pCR. I was FINALLY staged as T1mic N1.

For four months I was worried sick that I was stage IV out of the gate....What a relief finally having the pathology report in front of me. I'm glad I had the neoadjuvant chemo, but waiting for the report is difficult beyond words!!

Awaiting rads now and a year of herceptin....but there is finally light at the end of the tunnel!

ER-/PR- Her2+++ 1/5 nodes; pCR after neoadjuvant chemo

Dx 9/29/2012, IDC, 3cm, Stage IIb, Grade 3, 1/5 nodes, ER-/PR-, HER2+Chemotherapy 10/31/2012 Adriamycin, Cytoxan, TaxolTargeted Therapy 12/31/2012 HerceptinSurgery 03/06/2013 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)
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Mar 18, 2013 09:02AM frankp wrote:

If you're about to start Herceptin, I suggest you get a baseline serum HER2. You can ask your doctor, but first you might read this link: www.labtestsonline.org/understanding/analytes/her2neu/tab/test Show it to your doc--it comes from the AACC, and most oncologists are not aware of AACC. Also, you might browse through the Web site www.hertestonline.com Good luck!

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Mar 19, 2013 10:23PM chachamom wrote:

CameraKim....what a relief!!!  Its good to hear good news!  Good luck on your treatment.

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm

Dx 3/12/2012, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2+Surgery 04/03/2012 Mastectomy (Right)Hormonal Therapy 05/30/2012 TamoxifenSurgery 11/09/2012 Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Surgery 10/07/2013 Reconstruction: Nipple reconstruction (Both)
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Apr 4, 2013 05:25PM Dejaboo wrote:

CameraKim  Good news, but I am a little confused.

I see you had neoadjuvant chemo.   Did you have this for the Microinvasion?

Or was your IDC originally larger?

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Apr 4, 2013 06:19PM CameraKim wrote:

Hi Dejaboo,

It's really confusing to us too. I think they chose neoaduvant for two reasons....I am Her2+++ and I had node involvement.

The biopsy from my tumor before chemo showed a micro invasion, but I think the doctors thought it must be more than that because it was in my lymph node. We'll never know for sure because I had chemo first. But after my lumpectomy, the pathology came back as DCIS with an invasion to the lymph node...my breast surgeon thinks it was a micro invasion after all. I want to go back and talk to clarify. It is all so confusing.

ER-/PR- Her2+++ 1/5 nodes; pCR after neoadjuvant chemo

Dx 9/29/2012, IDC, 3cm, Stage IIb, Grade 3, 1/5 nodes, ER-/PR-, HER2+Chemotherapy 10/31/2012 Adriamycin, Cytoxan, TaxolTargeted Therapy 12/31/2012 HerceptinSurgery 03/06/2013 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)
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Apr 4, 2013 06:30PM dancetrancer wrote:

So they did an SNB at the time of biopsy?  Not sure I understand, b/c that is not the usual course of action.  Usually it's biopsy of the breast with no SNB.  If IDC in breast is found via biopsy, and it is felt to be large, chemo first to shrink it.  Then usually lumpectomy with SNB.  I think.  I'm confused about your case, too!

I saved my hair with cold caps! TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS). IDC missed on L by first 3 paths; see bio.

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Apr 4, 2013 06:48PM julz4 wrote:

CameraKim I am thinking they did the Chemo because of the node. Although micro invasive they didn't want to take a chance once it's in the nodes. No matter how micro invasive! I'm glad you found your place here but it's a very small group as few of us meet this criteria. For me it's just the Drs belief that I'm triple neg & they didn't test my Her2 as it was too small to test & also the risk on my heart didnt warrant even testing. But they were worried about my nodes as one showed funky on the mammo & MRI. They told me that would change the whole treatment plan if they found a few cells in them. I'm glad your seeing the light at the end of the tunnel!

DX 5/15/2012 with DCIS. Partial Mastectomy & CNB 5/22/2012, DX 5/30/2012 DCISMI, 2.8cm, Tumor stage T1, Grade 2-3/3, 0/2 nodes, ER-/PR-, No HER2 testing due to not enough invasive tissue.

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Apr 4, 2013 07:04PM, edited Apr 4, 2013 07:19PM by CameraKim

Dancetrancer,

I had a tumor biopsy that showed micro-invasive cancer. Because of that, they scheduled a MRI for me which showed activity in an axillary node, it also showed a 2cm spot on a rib which they were afraid could be a met. So, a PET scan was in order. The PET scan again showed activity in a node so they did a biopsy. Although the biopsy of the breast tumor showed a micro-invasion, the node invasion was greater than 2mm. 

The grade of the tumor and the  her2 status, along with the node invasion made neoadjuvant chemo necessary. At that time they didn't know what the lesion was on the rib. Their plan was to watch it and see how it responded to chemo. Thank goodness, after dose dense chemo it was grossly unchanged. 

I saw my breast surgeon a week after lumpectomy to check on the healing. She had just recieved my pathology that morning, and although she said she wanted to read another time...she thought it was highly unusual and a case that should be written up in a medical article. I am still not sure why she said this. I need to go back and sit down with her again. 

Here is my final pathology:

Tumor type: DCIS

Invasive Carcinoma: Not applicable

Histologic type: Solid to cribform

Grade of DCIS 2-3

Prolifercation Rate (mlb-e1) High

Necrosis in DCIS: YES

Lymphovascular invasion: Not identified

Lymph Node status 1/5

Stage pT1mi, pN1

Does that make sense to you? Not sure if it makes sense to me...still lots of questions. My tumor was fast growing and aggressive. She said if it hadn't made it to a lymph node I'd be stage 1/2. Instead I'm IIa. Thinking about that, it might mean this forum is the wrong place for me. Can't figure out quite where I belong ;)

DCIS 3.5 cm with micro invasion; T1mic N1; ER-/PR- Her2+++ 1/5 nodes; pCR after neoadjuvant chemo

ER-/PR- Her2+++ 1/5 nodes; pCR after neoadjuvant chemo

Dx 9/29/2012, IDC, 3cm, Stage IIb, Grade 3, 1/5 nodes, ER-/PR-, HER2+Chemotherapy 10/31/2012 Adriamycin, Cytoxan, TaxolTargeted Therapy 12/31/2012 HerceptinSurgery 03/06/2013 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)
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Apr 4, 2013 08:14PM, edited Apr 4, 2013 08:19PM by dancetrancer

So interesting.  My guess would be when they did they MRI and saw the hot axillary node and the rib spot they couldn't be sure it wasn't a MET.  Often they don't do breast surgery in Stage IV (I think, I could be wrong though as I'm not as well versed in Stage IV).  So, my guess is that they did the chemo thinking if the rib spot went away then you were stage IV. ???  Since it didn't, it wasn't a MET (thank goodness), so they did surgery and didn't find any more cancer b/c of complete pathological response.  If they had done a lumpectomy or mastectomy before chemo, they may have found more invasive cancer (the cause of the positive node)...but since you had chemo first, you will never know I guess.  Good thing is, it's gone, you did aggressive treatment and kicked it hard! Congrats!!! 

Staging is very complicated and hard to understand sometimes, especially in a case like yours.  Take a look at the link below.  If you study the tables, you'll see stage IIa is given once you get a positive lymph node that is both axillary and internal mammary chain.  So maybe that explains why she said you are stage IIa?

I think.  That staging stuff is complicated! Maybe print out the tables and get your onc to explain it to you better. 

http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page3

I saved my hair with cold caps! TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS). IDC missed on L by first 3 paths; see bio.

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