Comedo/Cribriform DCIS - does that automatically mean HER2+?

Jennliza
Jennliza Member Posts: 184
edited June 2014 in Just Diagnosed

On 4/12, I had a routine Mammo...my 3rd one since I am 42...and was told to get a stereotactic biopsy b/c they found microcalcifications . Three days later I had the biopsy...but knew it was bad just by my radiologist reactions. So I was not surprised when I got the pathology report or cancerous cells. However, I wasn't expecting a diagnosis of the aggressive form, Comedo type. I also have Cribriform...but from what I read that doesn't always turn into IDC if left untreated, but comedo does! I had my MRI lastnight and see a Breast Surgeon tmrw. I called the MRI place and they read me the results quickly. I didn't hear invasive or micro invasions anywhere, but there was a lot of medical jargon so I can't be sure till tmrw.

My question is about Comedo type and HER2+...is there anyone who had Comedo type and wasn't HER2+?

I will listen to my docs...but from what I am reading...it sounds like I should have a mastectomy vs lumpectomy if it is HER2+.  I scared, but trying to read and educate myself as much as possible. This forum has been amazing...thank you!

-J

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    I had comedo type along with some solid and cribiform, and did in fact also have a micro-invasion, but as is common with DCIS and tiny areas of IDC, they did not even test for HER2 as it doesn't change the treatment plan.    Herceptin is only given with chemo, which is never used with pure DCIS as it addresses the possibility of rogue cells which may have escaped the breast, which is by definition impossible as long a the diagnosis is pure DCIS, regardless of the form.     It is not usually given with areas of IDC <5mm, although there have been exceptions, but in general it is considered that in such cases the risks that it may have spread is much less than the risks of severe, life-altering side effects from the chemo.

    HER2+ is actually much more common in DCIS than in IDC, so it's prognostic implications in DCIS are as of yet unknown - you would think if having HER2+ made DCIS more likely to become invasive, the proportions would be more similar, but they aren't.

    As for the mastectomy vs. lumpectomy decision, it is of course up to you, but you should know that survival rates are about the same, and may be even better for lumpectomy plus radiation than mastectomy, regardless of HER2.    Cancer within the breast cannot kill you - it is only when it spreads outside of the breast that it becomes a problem, and once that has happened, mastectomy doesn't change anything.   Beesie has a good post that you might find helpful:

    Not sure why it won't let me put it in, but if you search under her name and Mastectomy vs. Lumpectomy you should be able to find it.

  • Dancermom1999
    Dancermom1999 Member Posts: 122
    edited May 2014

    I had the same type of DCIS as you do with  a 2.6mm IDC and my HER2 was negative.

  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    I had exactly your Dcis,grade 3,comedown necrosis, at the biopsy. I was her2 negative so no I don't think there's a link. If I was her2 positive I think I would have had Herceptin treatment. I just had lumpectomy and radiations. Usually comedown necrosis grade 3 are the most aggressive Dcis. Believe it or not I'm not sure about my final diagnosis after lumpectomy. That's why I am consulting with dr.lagios. An expert professor in Dcis for over 30 years. It's worth the money you pay. I am eager to hear from him he's in Europe now. I worry sometimes bcos I was told grade 3,I wish I was lower grade..however I'm hoping that dr.lagios will give me my final diagnosis and answer all my questions. Best of luck...

  • Infobabe
    Infobabe Member Posts: 1,083
    edited May 2014

    Hope, Dr. Lagious was the deciding factor for me not to have rads.  I was already thinking that but he put the seal on it.  My costs were about all covered with insurance.  He will diagnose what is appropriate for you.

  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    just to add from my own experience..I'm not trying to lead you to do any decisions but it's just my personal opinion since I have anxiety..looking back to what i went thru since my diagnosis in August 2013 and lumpectomy/radiations,etc....I would probably opt for mastectomy. My own experience with radiations was really bad..beside since I had grade 3 but no micro invasion as they told me(but who knows really,that's why I'm consulting dr.lagios) I just wish I was given the option again and I would have removed my breast instead..because to the day I still suffer from breast pain every single day. It got worse after the radiations...I ask sometimes myself am I going to live in pain every day of my life..and what if I had mastectomy instead !! I don't need to take over your thread but I really wanted to open a discussion however I don't know how to do it here on this board:// forgive my ignorance ,I need to know if there's any ladies who went thru lumpectomy and radiations after Dcis.and they suffer from pain??? Swollen breast,extreme sensitivity,not even my kids can come close to my breast when I hug them,it's affecting my life. And making me wonder of mastectomy was less painful than living with an extreme sore breast. ?? Beside I hope that radiation really destroyed any other cancerous cells that des might have seen in my breast.what made me wish I did mastectomy is that if there's other areas where there was any other cancer,removing the breast would guaranteed that all is gone?  Please ladies who had similar experience share with me your experience please. I guess scared42 would be helped as well to be well informed..I'm exactly 42 years old like you scared42....after almost 8 months of this whole nightmare ,I still find myself unable to find peace of mind and answer torturing questions.....I appreciate any opinion that might be helpful please.

  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    thank you info babe,I live in canada so I will have to pay for the consultation. Anyways my husband will ask our insurance here if we will get reimbursed..no problem..I can see you had grade 1 Dcis. If I was grade 1 I would be the happiest.....

  • Infobabe
    Infobabe Member Posts: 1,083
    edited May 2014

    Yes, Hope, DCIS grade 1,  .9mm.  But they were driving me toward 6 weeks of rads.  I would have gone for it, but I had a long time to study up while healing from the lumpectomy.

    You haven't filled out your diagnosis but if you are certain there is no invasive factor, it is still DCIS.  All I can say is if I had a recurrence, i would go for either another lumpectomy (to get a clear diagnosis) and then maybe a MX.  I am much older than you and I know this decision is harder for a younger woman.  I do urge you to go for the 2nd opinion.  Your situation is more complicated than me and you are on the cusp.   Whatever you decide, I know you have a long life ahead of you.  Don't let DCIS freak you out.

  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    hi info babe,thank you for your support,yes I'm freaking out a lot lately...since I have grade 3 comedo necrosis....and 2 young kids of 6 and 9...hard to keep myself focused on getting better ,this is a horrible diagnosis...my pathology report after lumpectomy showed I'm grade 1/2. How it's possible. I don't get it. That's why I want to get second opinion from dr.lagios even after 8 months even after I was done my radiations. I'm eager to know what was inside my breast...I think having constant pain doesn't make me feel better..pain always as an indicator that something wrong going on...does it take this long to heal!!!!!! I've been suffering for the last 8 months...had a good uplift for 2 months and I was feeling better then I regress again. I'm tired of living in fears and doubts...I sure hope I live long enough to see my kids all grown ups...my only wish....

  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    and sorry you re right my diagnosis was set to private..didn't pay attention...after lumpectomy they found 4+ cm Dcis. That's why they sent me for radiations...not sure what grade as I said that's why I'm waiting to hear from dr.lagios. But my oncologist was always positive about my case by the way..never said anything bad..he was a nice oncologist....he never said I had micro invasions they never found any micro invasions in the area of Dcis. But if I was "lucky" to catch it this early shouldn't i do something about it ? My fear that I will get invasive bc next time.that's why probably I should remove my breast before this happen? If it's a wake up call. Shouldn't I take all measures to protect myself from a potential risk? 

  • Infobabe
    Infobabe Member Posts: 1,083
    edited May 2014

    Hope, I guess that is your choice, Rads or MX.   This is such a personal decision.  It all depends how you feel about losing a breast.   I don't know how much good Dr. Lagious can do you.  He is best when the treatment is uncertain.  The DCIS is widespread, but still DCIS. so don't panic.

    There are many threads on this web site concerning rads and MX.  You need to learn what the experience of others is.  You may do well if you launch your own thread.  Go to the upper left of this page to All Topics.  Click on that and scroll down until you find a title that applies to you.  Click on it and there will be a button at the top for Start a New Topic. 

    This is a tough time, but your nerves will settle down once you have a plan in place.  You are going to be fine and live a long time.  I wish I could be there to give you a hug.

  • Hope14
    Hope14 Member Posts: 40
    edited May 2014

    info babe- you are such a sweet lady. You made me go "awwwh" when I read your message and supportive words,thank you so much :'(..I will send you a pm soon...thanks for teaching me how to open my own thread,I'm sorry  I  didn't mean to take over scared42 thread,but I know that when we have the same diagnosis we love to learn about other people experiences and treatment plans. I wish you the best scared42. I know that her2 negative is better than positive..this is what my oncologist told me ..it means it's less aggressive..please keep us posted. 

  • coffeelatte
    coffeelatte Member Posts: 209
    edited May 2014

    Scared42, have you gathered more information and made a decision?  I hope all is well. I had DCIS, grade 3 comedo necrosis with ER- PR-. I opted for a double mastectomy since I am 56-years old and was at peace with the decision. It was an easy decision for me because my breast surgeon urged me to get a double mastectomy because I was grade 3 estrogen/progesterone negative.  At 42, I am not certain I would have felt the same or made the same decision.  With 3-D mammography now, detection of abnormal cells is just so much better.

    Hope14, I am so sorry to hear you are still in pain mentally and physically with your decision. I am wondering if you are suffering from lymphedema in the breast.  Please go to the lymphedema thread and check it out.  There are women there who have created a very successful website covering all aspects of lymphedema.  My physical therapist (specialist in lymphedema) uses their website. I am wondering if proper treatment could turn things around for you.  Radiated breast tissue is very sensitive and lymphedema is a side effect. But also, lymphedema is a side effect of a mastectomy so it can happen no matter which route you choose. Relax with your decision. You have dealt with the cancer very proactively and you will be monitored very closely for years to come. A mastectomy is always an option for you, so take your time and heal. I think you need to address this breast pain right away. You will feel so much better and the anxiety will lessen it's grip.  When I had lymphedema in the trunk area I was miserable with pain and regretting the mastectomy decision so much. Now that I have had physical therapy and do 5-10 minutes of manual work on that area daily, I have my life back again. Hope, you should not be in this amount of pain. You NEED those children of yours to hug you often.

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