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Micro-invasive DCIS that is her2+++

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  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited June 2011
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    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.  

  • Liz08
    Liz08 Member Posts: 100
    edited June 2011
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    Beesie,

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

  • Liz08
    Liz08 Member Posts: 100
    edited June 2011
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    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. 

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited July 2011
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    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

  • mom2one
    mom2one Member Posts: 51
    edited July 2011
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    I want to thank everyone for sharing their experiences.  It makes me feel better about my own decision. 

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited July 2011
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    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!

  • Tamara47
    Tamara47 Member Posts: 2
    edited September 2011
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    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. 

  • 2ns_Jenn
    2ns_Jenn Member Posts: 95
    edited September 2011
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    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

  • Tamara47
    Tamara47 Member Posts: 2
    edited September 2011
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    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.

  • suze1229
    suze1229 Member Posts: 1
    edited September 2011
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    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

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited September 2011
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    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

  • Liz08
    Liz08 Member Posts: 100
    edited September 2011
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    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 

  • Liz08
    Liz08 Member Posts: 100
    edited September 2011
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    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!  

  • Tricia38
    Tricia38 Member Posts: 1
    edited September 2011
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    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



  • kickitmom
    kickitmom Member Posts: 29
    edited September 2011
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    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? 

  • BlairK
    BlairK Member Posts: 11
    edited November 2011
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    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.

  • MissRC
    MissRC Member Posts: 1
    edited November 2011
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    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. 

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited January 2012
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    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? 

  • 2ns_Jenn
    2ns_Jenn Member Posts: 95
    edited January 2012
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    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!

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited January 2012
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    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. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited January 2012
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    There is a discussion on hair growth on the alternative thread. Might help?

  • amyob
    amyob Member Posts: 56
    edited January 2012
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    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!

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited January 2012
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    Thank you so much Amy, feeling better

  • Liz08
    Liz08 Member Posts: 100
    edited January 2012
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    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. 

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited January 2012
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    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. 

  • Liz08
    Liz08 Member Posts: 100
    edited January 2012
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    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. 

  • dab
    dab Member Posts: 2
    edited January 2012
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    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  

  • dab
    dab Member Posts: 2
    edited January 2012
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    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  

  • alliesmom15
    alliesmom15 Member Posts: 66
    edited January 2012
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    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. 

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2012
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    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! 

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