Treatment Received - PLEASE ADVISE

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mom2one
mom2one Member Posts: 138
edited June 2014 in DCIS plus HER2-positive Microinvasion

Could any of you out there with micro-invasive DCIS that is HER2+ PLEASE help me?  I had 2 failed lumpectomies on the left breast with 2 small areas of micro-invasion seen.  Together they do not equal one mm.  I ended up having a BMX and am undergoing TEs now for reconstruction.  I was told that all margins were clean and that 0/2 lymph nodes were involved.  I live in VA but was sent to Duke University Hospital for further eval.  I am being told that I need no further treatment, however, if I insist on chemo then they would do it, but they don't think it is necessary.  What treatment have the rest of you had?  I am meeting with my oncologist in 2 weeks and would like to see what other people have done.  I don't want further treatment but with grade 3 DCIS that was over 6cm with the invasive areas and HER2+ I also feel nervous about not doing anything else.  Any information would be appreciated.   

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  • mom2one
    mom2one Member Posts: 138
    edited April 2011

    Thank you to all who have private messaged me.  It has been great to get more info.

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  • laurakay
    laurakay Member Posts: 109
    edited May 2011

    I, like, you, had a BMX, and no other treatment.  I did, however, insist on taking Evista, and have had Lupron to put me into menopause.  I was ER/PR + with a 1.5mm invasive component that couldn't be tested.  

    Good luck to you!  Can you let me know what you end up doing?

    Laura 

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  • mom2one
    mom2one Member Posts: 138
    edited May 2011

    Laura:  I will definitely let you know.  My friend's husband is a doctor and he researched some info for me and he is telling me he suggests chemo if I am otherwise in good health.  However, will be seeing one more oncologist that my personal oncologist has picked for me.  We will see if he has any idea what to do. 

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  • rwuensch
    rwuensch Member Posts: 6
    edited May 2011

    I had 8.5 cm of DCIS with one microinvasion.  I had a right side mastectomy and reconstruction.  No chemo.  No radiation.  No drugs, since my DCIS was estrogen negative.  I am confident that the docs know what they're doing.  Was treated at the University of Pennsylvania Hospital -- a well-respected cancer treatment hospital.  I'm not going to worry about it any more.  It's gone and I'm moving on.  They said all I have to do is get an annual mammo on my natural breast.  Sounds good to me.

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  • mom2one
    mom2one Member Posts: 138
    edited May 2011

    I had one path report that said ER- and one that said ER+ so I am trying to get confirmation on that now.  Whatever my final decision is I won't look back either.  I will move on just like you.  I don't want to spend all my time worrying about "what if".

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  • alliesmom15
    alliesmom15 Member Posts: 106
    edited July 2011

    mom2one how are you doing?  What did you do for treatment if anything?

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  • mom2one
    mom2one Member Posts: 138
    edited July 2011

    Alliesmom15:  I am doing well, thanks for asking.  I have been seen at Duke and I spoke to someone at John's Hopkins.  My oncologist consulted with 4 others in his practice that focus on breast cancer.  They all agreed that chemo/herceptin would not be a good idea for me.  They feel the areas of microinvasion are so small that it would hurt me more than benefit me.  They said microinvasive DCIS should behave like DCIS only.  So I am going ahead with my TE fills and should have my exchange surgery in September.  Take Care, Lynette

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  • alliesmom15
    alliesmom15 Member Posts: 106
    edited July 2011

    mom2one, thank you!  I went to the University of Utah and she agreed I needed no other treatments.  I got a call yesterday from my surgeon that did the masectomy and him, an oncologist, a pathologist and a radiologist had a discussion group going over my case and they agreed with the university Dr. 

    The very first oncologist that I talked to told me he thinks I should do the Herceptin treatments for a year, I am so thankful I trusted my gut on this, and this site for seeking a second opinion.

     I had reconstructive surgery right after my masectomy and have some tweaking I would like to do with them.  I found a PS that does the fat grafting and am going to see her in Aug.  I hope she can help me make them look better than they do now.  I have ripples and one sits higher than the other.

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  • julianna51
    julianna51 Member Posts: 438
    edited July 2011

    mom2one and alliesmom - I'm glad to hear that your oncologists said no chemo/herceptin.   That is what I was told by my oncologist too but every now and then I worry a little bit about that HER2+ and the microinvasions.   I unfortunately have to do radiation but that is so much better than chemo.

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  • mom2one
    mom2one Member Posts: 138
    edited July 2011

    Julianna51 and Alliesmom15:  Just to let you know my oncologist asked me to talk to another of his patients about microinvasive HER2+.  She is going to UVA on July 26th and will let me know what info they give her.  She feels like I do that she will probably not do anything further, but she is going for this opinion.  My oncologist told me that there have been several patients recently have a bad reaction to herceptin.  One lady who insisted on herceptin and chemo had such extensive heart damage from herceptin that she has to be on oxygen for the rest of her life.  If you have no choice but take the risk for chemo and herceptin then I would definitely try it, but if all the experts are saying not to do it, then I just have to trust them.  I will let you know what UVA says to the other lady after her appt. 

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  • alliesmom15
    alliesmom15 Member Posts: 106
    edited July 2011

    Julianna, why do you have to do Radiation? 

    Mom2one, I am not going to do the Herceptin or Chemo, I believe if I keep up my diet and take all of my supplements I will be ok and not get Cancer anywhere again.  I would love to know what the UVA says.

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  • mom2one
    mom2one Member Posts: 138
    edited July 2011

    Alliesmom:  What supplements are you taking if you don't mind me asking? 

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  • alliesmom15
    alliesmom15 Member Posts: 106
    edited July 2011

    I am taking

    Vit D-3 2000 IU's 2 times a day

    Fish oil 1000 mg 3 times a day

    Grape seed  with OPC's 100 mg one a day

    Co-Q10 200 coenzyme Q10 one a day

    Glutathione 250 mg one a day

    Tumeric/curcumin 95 500 mg one a day

    Flaxseed oil 1200 mg one a day

    Indole 3 Carbino with Resveritrol one a day

    one Acai chew also

     and a Multivitamin.

    I am trying to drink filtered water so I get no lead in it too.

     My Dr at the University said I am doing good so I will keep on them.  One of the ladies on this site is taking the same thing and more but this is all I can afford right now. 
    I bought a juicer and have been doing that as well as eating better.  No pork products or crustaceans, less beef.  I have my days where I eat crap, then feel guilty.

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  • julianna51
    julianna51 Member Posts: 438
    edited July 2011

    mom2one - Yes, I'd like to hear what UVA says.

    alliesmom - I have to do radiation because I have a less than 1mm margin along with a fairly large area of DCIS.   Believe me, I tried to get out of it but after seeing 3 different ROs I had to accept it.  You take a lot of the same supplements I take.   I think they make such a difference.

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  • alliesmom15
    alliesmom15 Member Posts: 106
    edited July 2011

    That sucks, I am so glad I didnt have to do any rads or chemo.  I am sorry you have to go through it.

    I try to eat better and am more conscientious of eating veggies and fruits

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