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

Forum: DCIS plus HER2-positive Microinvasion —

Meet others with this diagnosis.

Posted on: Feb 15, 2010 06:35PM - edited Apr 28, 2010 01:03PM 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. 

Dx: 1/16/08, Stage T1mic, DCIS,
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Jun 19, 2011 05:54AM Beesie wrote:

pTmic:   Pathologically (i.e. as seen in the breast tissue under a microscope in the pathology lab) a invasive Tumor that is microinvasive in size (i.e. 1mm or smaller)

pN0:   Pathologically (again, as seen under the microscope), Lymph Node negative, i.e. 0 (zero) lymph node involvement. 

pMX: Pathologically, Mets unknown.  This is normal for DCIS, DCIS-Mi and early Stage I cancers where there is no evidence of mets or expectation of mets so the tests to determine the presence of mets are simply not done. In these cases, pMX is assumed to be the same as pM0, which means pathologically there is no (0) presence of mets.  

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 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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Jun 19, 2011 01:27PM Liz08 wrote:

Beesie,

you always come to the rescue.  You're awesome!!!!  

Dx: 1/16/08, Stage T1mic, DCIS,
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Jun 19, 2011 01:30PM Liz08 wrote:

Alliesmom-

I did a typo on my last post. I was NOT able to have the test done.  I was told my invasive component was too small.  Sorry about the confusion. 

Dx: 1/16/08, Stage T1mic, DCIS,
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Jul 2, 2011 04:38PM alliesmom15 wrote:

I went to the University of Utah and saw Dr. Anna Beck, she doesnt want to do anything.  She wants to see me in one year :)  I am happy and I thinks she really knows her stuff.  I am very relieved and hope I never have to deal with this ever again

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jul 2, 2011 08:00PM mom2one wrote:

I want to thank everyone for sharing their experiences.  It makes me feel better about my own decision. 

Dx 12/30/2010, DCIS, 6cm+, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jul 5, 2011 07:11PM alliesmom15 wrote:

My surgeon called me today.  He had a discussion group that consisted of himself, an Oncologist, a Pathologist and a Radiologist.  He said they all came to the conclusion that I do not need any further treatment as well!  I am just so relieved and more than ever sure about my decision.

All I need to do is get a nipple and fix my crooked foobs, then I am in business!

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Sep 14, 2011 10:57AM Tamara47 wrote:

Hello All - I was diagnosed on Aug 4th and had a double mastectomy on Aug 22.  My final path report came in and the tumor size (invasive component) is 4-5 mm.  I am ER and PR positive and HER2 ++++ and node negative, grade 3.  To my surprise the oncologist recommends chemo and then hormone therapy.  I need more information as to why and I am definitely getting a second, third, fourth..... opinions.  In the meantime I need to read as much as is out there for what I have. Can you please recommend some sites or research or anything that would help me make my decision.

 We have a strong family history, My two Aunts and Sister are survivors though we do not have BRCA 1 or BRCA 2.  

Thank you for the help. 

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Sep 14, 2011 01:58PM 2ns_Jenn wrote:

Tamara -

I just had a friend (that I met here) email me a link to an article on this very topic...
http://www.oncologyreport.com/news/clinical/single-article/uncertainty-rules-adjuvant-chemo-for-early-her2-breast-cancer/ebfda0a351.html

Both of us faced this same issue and had very similar stats (see mine below).  We both did extensive research (I have many articles I could provide) & saw numerous oncs.  There were some that recommended chemo but the majority did not.  Additionally NCCN (National Comprehensive Cancer Network) Guidelines which are what most oncs refer to indicate that adjuvant therapy for anything less than 5mm is not recommended. 

Both of us ended up with lumpectomy, radiation & hormone therapy (Tamoxifen).  I have since ceased the Tami though due to bad side effects & the limited amount of benefit it was providing. 

Best of luck in your decision & feel free to PM me if you'd like further information.
Jenn

Jenn - I have fought once. Unfortunately, I am fighting again. This time...I will win! Dx 6/23/2010, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 7/16/2010 Lumpectomy: Left Radiation Therapy 9/28/2010 Breast Dx 4/9/2013, DCIS, <1cm, Stage 0, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/29/2013 Reconstruction (left); Reconstruction (right)
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Sep 14, 2011 04:19PM Tamara47 wrote:

Thanks Jenn - That article was helpful and if there are more I am so open to reading all I can right now.  My second opinion is on Monday and I would like to read as much as I can before then and have a good list of questions to ask.

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Sep 17, 2011 02:46AM suze1229 wrote:

Ok, not sure how relevent what I have going on is to this forum, but I will lay it out from posting it over in DCIS, and you can take it for what it is worth!  :)

Thanks to everyone for their positive comments, support and prayers. I can't tell you how much it means to me.... and I so believe in the power of prayer~! Thought I would just give you all an update taken from the notes the doctor gave me.

Meeting with oncologist today was hard. I had not really been informed yet about seriousness of my condition. Apparently my cancer is stage IV. Chance of cure not very good. But she did hold out slight chance... so will seize that and hold on to that... :-)

Essentially she said I have Matastatic Breast Cancer, stage IV, It appears to have only spread to the skin, and into some lymph nodes, so is limited (it was asked if I had the sentinel lymph node tested when I had my mastectomy. I did and it was negative for cancer). She also pointed out that there is not a test for cancer cells in the blood, so who knows, but hopefully the chemo would knock any out that are there. The cancer showed weakly for progesterone and estrogen receptors three years ago, but now shows negative. It is positive for Her-2-neu.

She prescribed multi-modality therapy, a mixture of chemo therapy, Carboplatin and Taxotere, and biologic therapy, Herceptin. Will repeat every three weeks, 4-6 treatments.

She was not positive regarding the chances of it being curable; but did say that if she did not consider it having a chance of being curable, she would not tell me that it did. I have to say, I didi appreciate her bluntness. Even if not curable, she did say it was likely I could have several years left, with treatment... just not several decades. :) I had an odd moment when were were driving home from the chemo. We passed an old home that looked like it had been pretty downright cool in its day. The windows and doors were all boarded up, and I simultaneously felt that I was that house... and that if I could do it, I wanted to fix it up and make it a great home again. It was an odd experience. I don't suppose I will ever have the chance to restore that old house back to her former glory, but I am holding out hope for restoring myself to my somewhat former glory..... LOL Hey! I will take what I can get!!!

So.... feeling ok now; very weepy at the slightest thing. I suppose that is allowed, under the circumstances. Got about 2-3 weeks left with hair; my daughter and her friends have requested to dye my hair some godawful color before it is shaved off. I have promised to do so.... LOL This is the chance to experiment... I may like purple roots that fade into aquamarine blue at the tips... Who knows? LOL And they are still holding out hopes that I will agree to buy a pink wig. Not sure, but I think I have my limits on that one. Regardless, going super short by the end of next week. You have to find what fun you can in all of this!~ And my good friend, Elena in Houston, is sending me one of her wigs she got when she went through this six years ago. She said to me, "I don't know why I thought I needed three wigs, but it was a buy 2, get one free.... so I have a great blonde wig I never wore, and I would love to send it to you!" LOL She is awesome! I met her when I lived in Houston in the mid eighties; she was my manager at my first job there, and although I didn't work for her very long, we bonded. She came to Utah and stayed with me in the early 90's on a skiing trip. She is such a bright, fun and positive person!

Friends and family here are taking it as well as can be expected. I am so fortunate to have a strong support network here at home. It may sound crazy, but I feel blessed. It seems like worst case scenario is a few more years with treatment. I can handle that. Best case would be a complete cure. I can really handle that! :)

THanks so much to you all.... if there is anyone who would like to talk to me in person, regarding any of this, feel free to call me. If I don't answer, leave a message and I will get back to you. Just can't promise how quickly that will happen!

Cheers!
Susan

801.231.0879

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Sep 17, 2011 05:53PM alliesmom15 wrote:

I am so sorry Susan, I will pray for you :( 

You live close to me, I am in WY.  How far away is Salt Lake City from you?  I went there to see Dr Anna Beck at the University, she was wonderful.

 I am thinking of you

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Sep 18, 2011 08:21AM - edited Sep 18, 2011 08:31AM by Liz08

Suze,

I'm sorry about your recurrence.  I wish the "C" word never existed. Never give up hope about not having decades to live. I have met several stage 4 long term survivors who continue to do well.   Cancer research & advances in medince continue at a rapid speed.  Just last week I had to fly out of Charleston, SC to CT & happen to sit next to a doctor who's goal in life is to discover a cure for cancer, he's a researcher at MUSC (Med Univ of SC) & he stressed doing cancer reseach is his life!

I would also like to suggest another forum that is for those who are her2+++; www.her2support.org.  There are many long term stage 4 survivors on that forum. Many who have gone through unique treatments etc. I met someone from my town on there who initially had DCIS & 2 yrs later had a recurrence to her liver & lungs; went thru trials & responded well to treatment and has been NED on scans for 6-7years! She has made alot of lifestyle & diet modifications. Another member of that forum that comes to mind has been NED since 1999 & continues to do well. She continues on Herception & does alot of holistic medicine. Both these ladies that I just mentioned were given a weak prognosis with a short lifespan.  Also, they both avoid sugar, since there is some controversery that sugar can fuel cancer.  Just a thought....    

You are entitled to grieve but then it's time to fight.....Hope and a positive attitude are vital to long term survivorship!

Continue to pray for God to guide you in your journey.

Liz 

Dx: 1/16/08, Stage T1mic, DCIS,
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Sep 18, 2011 08:28AM - edited Sep 18, 2011 08:30AM by Liz08

Tamara,

I think the majority of doctors will recommend chemo/herceptin with having a 4-5mm invasive component that is her2+++ but everyone's pathology report is unique in some way along with family history to consider. It is best to consult with several physicians and follow the majority rule & most importantly follow your heart as to making a decision that you can live with without looking back.

Wishing you the best!  

Dx: 1/16/08, Stage T1mic, DCIS,
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Sep 19, 2011 01:32PM - edited Sep 19, 2011 01:36PM by Tricia38

Tamara47,

I was diagnosed with HER2+ following my mx and reconstruction. I had a lumpectomy and clear margins but had the mx due to the size of my DCIS area of 8cm. Thankfully I had the mx as they found the HER2+ micro invasion of 2-3mm. I live in Ireland and met 2 oncologists. The first left it up to but his "gut feeling" was not to do chemo but left the decision to me. The second oncologist recommended chemo (TCH) due to my high grade, young age and pathology report not definitive as to whether it penetrated the blood vessels.

Personally, I decided to get chemo and had my second treatment today. I read lot about changing diet, etc and am making these lifestyle changes but I needed to do everything I could to reduce my risk of recurrence. I have 2 small children and a husband and did not want to face a situation in the future where I regretted not doing everything I could now to remove cancer from my body. I know there may be nothing there and this chemo is unnecessary but it was the only decision I could take.

Questions to ask if not too late are:
- grade of her2+
- if it penetrated the blood vessels (lymphatic vessels)
- % risk of recurrence
- what recurrence would mean
- could you do hormone only

Hope this helps. This is just my personal view. Good luck with your decision.

Tricia

Dx 3/29/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Sep 20, 2011 09:55AM kickitmom wrote:

I had a BMX in late May.  Pathology report showed nothing in right breast.  Left breast had LCIS, intermediate nuclear grade without necrosis.  Largest focus is 6 mm.  Left breast also had DCIS, high nuclear grade, solid and cribriform wtih moderate necrosis, 8.55 mm in greatest dimension with a microinvasion measuring .45 mm - identified as modified Bloom Richardson Grading  II (tubular-3, nuclear-3, and mitotic-1).  Oncolologist never performed Her 2/new test.  Wondering if he should have? 

Dx 4/15/2011, DCIS, <1cm, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
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Nov 3, 2011 05:23PM - edited Nov 3, 2011 05:24PM by BlairK

My wife's original biopsy was DCIS with suspected microinvasion.  After a BMX (both breasts had DCIS) on October 14th, the final pathology was IDC in the right breast and 3 foci of IDC, 1 mm, 1 mm and 3.5 mm.  HER2 positive 5.0 per the FISH test.  ER + and PR -.  First oncologist who we like and who is close to our home recommends Taxotere + Cytoxan + Herceptin x 4 and then Herceptin for a year.  All treatments are every three weeks.  Also Arimidex once a day for 5 years.  My wife will have various tests - MUGA scan, bone density scan, full body scan, blood work.  Monday my wife will get a second opinion and then take it back to the first oncologist.  The first oncologist discussed NCCN treatment guidelines.  My wife's IDC tumor size is on the borderline and the oncologist prefers in those situations to treat as opposed to wait and watch.  Without treatment, HER2+ reoccurence rates are 25 to 30 percent.  With treatment it drops to 2 to 3 percent.  The side effects especially with Herceptin are the scary part.  I think it is important to remember that microinvasion can turn into full invasion.  That is what happened to my wife - microinvasion on biopsy where they typically do not test for HER2 and full invasion after BMX and tested HER2 +.  Treatments will start 11/29 which is 6 weeks after surgery.

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Nov 16, 2011 02:58PM MissRC wrote:

I was diagnosed with breast cancer on April 27, 2011. Final pathology report read ER 1%+, PR-, HER2+ (over expresed), during my sentinel node biopsy was negative. The tumor was 5mm total size with less than 1mm was invasive.

I had a lumpectomy on May 16, 2011 and re-excision lumpectomy, with clear margins, on May 24, 2011. I started chemo on June 20, 2011 and completed my sixth chemo treatment on October 3, 2011. I started my 1st of 30 radiation treatments on November 1, 2011. After radiation I will continue to have Herceptin treatments until June. 

I can't wait to have my hair back. Does anyone have any suggestions to speed up hair growth? I am currently using Nioxin (stage 2). 

I am 28 and I can't wait to finish my treatment. 

Dx 4/27/2011, DCIS, 5cm, Stage IIB, 0/2 nodes, ER+/PR-, HER2+
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Jan 21, 2012 10:34AM alliesmom15 wrote:

Any of you that were DX with DCIS with focal microinvasion that are HER2+++ that opted not to do Chemo or Herceptin, do you ever have second thoughts or get scared?  Also after deciding not too, any METS?

Just curious, sometimes I let my mind wander too much and when people ask me why I didnt get Herceptin or Chemo I let it bother me.  

Miss RC have you tried Rogaine? 

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 22, 2012 06:04AM 2ns_Jenn wrote:

Jen - 

No chemo or Herceptin for me.  Just lumpectomy & rads.  I am still scared (they say that goes away eventually).  I don't have second thoughts about not doing chemo but I do have second thoughts about rads.  I believe I have scarring or some damage to my respiratory system from them.  I also wish that someone had counseled me more about options other than lumpectomy.  I have very dense, fibrous breasts which are now more painful than ever and the MRI/mammo process every 6 months is maddening!

Jenn - I have fought once. Unfortunately, I am fighting again. This time...I will win! Dx 6/23/2010, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 7/16/2010 Lumpectomy: Left Radiation Therapy 9/28/2010 Breast Dx 4/9/2013, DCIS, <1cm, Stage 0, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/29/2013 Reconstruction (left); Reconstruction (right)
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Jan 22, 2012 10:33AM alliesmom15 wrote:

Jenn, I had very dense breasts as well.  I didnt want to have a lumpectomy and do rads or chemo, I also had planned on reconstruction if I had opted for the lumpectomy.   I just decided to make them even and didnt want the cancer to mirror itself on the other side so I had a Bi lateral Mastectomy with immediate reconstruction.  My invasion was so minute that they couldnt measure but still worry somewhat about a cell escaping.  

I take lots of cell protectors and antioxidants and pray daily, I just have to always remind myself that it was the best decision for me. 

I was talking to a local woman here and she has been battling BC for the last 7 years, she is my age.  She was HER+ and had a year of Herceptin treatments but ended up getting brain mets even while doing that.  I think she thought my BMX was a little extreme but she ended up getting it the second time it came back so she ended up having one as well.

Thank you for responding. 

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 22, 2012 11:04PM Hindsfeet wrote:

There is a discussion on hair growth on the alternative thread. Might help?

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jan 23, 2012 08:12AM amyob wrote:

So far, so good for me.  I am over 2 years out now.  I don't worry as much as I used to.  I think it took at least a year before the fear eased up.  Hang in there!

Dx: 9/19/09, Stage T1mic, DCIS,
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Jan 23, 2012 02:49PM alliesmom15 wrote:

Thank you so much Amy, feeling better

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 23, 2012 07:54PM - edited Jan 23, 2012 08:13PM by Liz08

I'm a little over 4 years out from diagnosis & will be 4 years out from finishing rads in May. Had a lumpectomy, re-excision to clear a questionable margin & rads. I've been taking antioxidents under the advice of my naturalpathic physician.  

There are so many long term survivors that have moved on & never visit this forum once they finish treatment. Remember that most who post on this forum are either newly diagnosed, had a recurrence, have anxieties/struggling emotionally & there are those member who are angels in diguise who just continue to offer support those who need it.  Beesie is a perfect example of an angel in disguise. 

Hang in there, it gets easier with time.  Take one day at a time & always live each day to the fullest. 

Dx: 1/16/08, Stage T1mic, DCIS,
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Jan 23, 2012 08:29PM alliesmom15 wrote:

Thank you Lizzy, I come on here and read a lot, mostly about reconstruction and the 40 survivor thread.  I am on lots of antioxidants that I think I got from your list :)  I am more comfortable taking them and also am on an aspirin therapy per my oncologist.

Had a revision Dec 6th with fat transfers and nipple reconstruction, she did a beautiful job. 

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 24, 2012 08:08AM - edited Jan 24, 2012 08:09AM by Liz08

alliesmom- 

Glad your reconstruction went well : ) 

Someone above asked about help with hair regrowth.  Biotin supplements should help, I lost tons of hair while doing radiation & started taking Biotin  about 6 weeks after completing rads & have ever since.  I would google what other supplements aid in hair growth or see a naturalpath for advice. 

Dx: 1/16/08, Stage T1mic, DCIS,
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Jan 25, 2012 10:41AM dab wrote:

Hi, I fall into that area. The drs are wanting me to be apart of a study taking trastuzumab (also called Herceptin®) to my breast radiation therapy. Has another else taken this drug?

Any feed back on if I should do this?

thanks

Deb  

Dx 12/4/2011, DCIS, Stage 0, 0/0 nodes, ER-/PR-
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Jan 25, 2012 10:42AM dab wrote:

Hi, I fall into that area. The drs are wanting me to be apart of a study taking trastuzumab (also called Herceptin®) to my breast radiation therapy. Has another else taken this drug?

Any feed back on if I should do this?

thanks

Deb  

Dx 12/4/2011, DCIS, Stage 0, 0/0 nodes, ER-/PR-
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Jan 25, 2012 03:25PM alliesmom15 wrote:

dab, if you read this thread through you will find out so many different peoples experiences.  They wanted me to do Herceptin but I have read lots of studies saying Herceptin is not effective if used on its own.  Some ocologists will disagree and that is something you and your doctors will have to decide.  I know lots of ladies that have done it.

I myself chose to do no chemo, radiation or Herceptin.  I opted for a full BMX, it is something that I personally wanted to do.  I also was recommeded to do Herceptin by my first oncologist but got two more opinions and they both disagreed. 

Jen Dx 5/21/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/21 nodes, ER-/PR-, HER2+
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Jan 31, 2012 07:05AM dancetrancer wrote:

Hello all!  I've been gathering stories from those who are t1A to help me make my own decision (along with lots of articles, etc, etc).  I read through this thread a while back, but I've missed a few of you who are t1A's!  If you are a T1A, I invite you to come post on my thread:

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

Thank you Lizzy and  Dejaboo for calling my attention closer to this thread!  Wish you all the best! 

Cold caps work! coldcapphotos.shutterfly.com/p... 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); see bio.

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