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

Jan 31, 2012 09:40 AM, edited Jan 31, 2012 09:40 AM by alliesmom15

Aug 3, 2012 09:09 AM 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!!!

Aug 3, 2012 10:03 AM 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??? 

Aug 9, 2012 10:31 AM 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? 

Aug 9, 2012 04:38 PM 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

Sep 10, 2012 06:20 PM, edited Sep 10, 2012 06:33 PM 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.

Sep 12, 2012 07:57 PM 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.  

Nov 15, 2012 07:58 PM 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

Nov 18, 2012 07:01 AM 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

Nov 27, 2012 12:26 PM 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?

Mar 17, 2013 07:20 PM 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!

Mar 19, 2013 07:23 PM Chachamom wrote:

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

Apr 4, 2013 03:19 PM 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.

Apr 4, 2013 03:48 PM 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!

Apr 4, 2013 05:14 PM, edited Apr 4, 2013 05:19 PM 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. 

www.cancer.gov/cancertopics/pd...