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Micro-invasive DCIS that is her2+++

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  • amyob
    amyob Member Posts: 56
    edited March 2010
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    Thanks Laura,  Yours is just a week later, right?  Somehow very comforting that we'll be going through this together...  

    xo amy 

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Hey girls-

    Amy, good luck on your exchange on March 23rd, only a week away Laughing!

    Laura, good luck to you on your exchange on April 2nd, one day after your B-day Wink!

    I am so glad you girls connected in sooooooo many ways Smile.  

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Amy-

    your avatar...I know it has something to do with music but what is it called?

    Laura, you need to get an avatar up that fits your personality too.

  • amyob
    amyob Member Posts: 56
    edited March 2010
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    Thanks for the good luck, Liz:)  It's just a stage picture.  Laura, I heard from someone who had the surgery last year, and she said it would probably only be a couple of days for recovery as well.  We can hope! 

  • braceletgirl1014
    braceletgirl1014 Member Posts: 3
    edited March 2010
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    Hi Liz. Thank yo so much for your reply.Sure, we can talk, what it's the best way for you. Please let me know. HAVE A GREAT DAY!!

  • braceletgirl1014
    braceletgirl1014 Member Posts: 3
    edited March 2010
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    Hi Amy. Hope all is well. Thank so much for replying to my post and feel free for any questions, even though we all have different DX. Take care

  • laura347
    laura347 Member Posts: 58
    edited March 2010
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    okay, sooo I am a little freaked out by the post by braceletgirl, only because she obviously was offered treatment...TWICE! I was offered nothing, and the %s...look bad for recurrence without it, what is a girl to do.? I am trying to move on...maybe I should have pushed for chemo and Herceptin?! Right now I am tired and kind of sick of the whole thing, not to mention every body quirk freaks me out....

    Laura xoYell

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Hi Braceletgirl-

    glad to see you found us Laughing and that you're doing well.  I'm a little surprised that you were offered chemo since all of us weren't.  I think you went to Dana Farber and one of my numerous consults was from Dana Farber too; Dr. Eric Winer and after rewiewing my case he felt confident about my prognosis being that of DCIS.  But...I was also told that everyone's pathology is unique and ofcourse the ultimate decision should be made between the patient and doctor.

    Laura-

    I'm sure you are sooooo tired of being told this...you're feelings are totally normal and with time it will get easier.   Focus on the fact that your cancer was VERY tiny, caught extremely early and you were node negative.....all good things Cool.   

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2010
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    braceletgirl, I'm wondering.... did you have more than one microinvasion?  As I mentioned in an earlier post, although according to staging and treatment guidelines doctors aren't supposed to add up the size of all the invasive tumors when they make a decision on treatment - they are supposed to use the size of the single largest tumor to determine treatment options - I've seen cases where they do add together all the tumors.  I've seen this in the past specifically related to tiny HER2+ invasions.  If someone has three or four 1mm or 1.5mm invasions, although according to treatment guidelines a 1mm or 1.5mm HER2+ invasion wouldn't warrant chemo and Herceptin, the patient is offered these treatments because the total amount of HER2+ invasive cancer is 4mm  or more.

    Does that describe your situation or did you have just a single 1mm microinvasion, like many of the rest of us?

  • amyob
    amyob Member Posts: 56
    edited March 2010
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    This is the opinion I got from Kathy Miller: 

    Several large pathology series have suggested that the patients with focal microinvasion diagnosed with an area of invasive disease of 1 mm or less have a prognosis identical to those patients with pure DCIS.  Specifically, this would entail an extrememly low risk of distant disease, and she does not believe it would at all justify the use of cytotoxic chemotherapy or anti-HER-2 targeted agents.  If I had elected to pursue breast-conserving surgery or only unilateral mastectomy, it would be reasonable to consider antiestrogen agents (since I'm slighly ER+) in hopes of decreasing the risk of contralateral malignancy.  However, with the bilateral mastectomy, there really is no rationale in my case to consider any systemic therapy at all.  She suggested that with such a low risk of distant disease, she suspects that the likelihood of significant toxicity from any attempts at systemic therapy would outweigh any potential benefit.

    Hope this helps a little....

         

  • braceletgirl1014
    braceletgirl1014 Member Posts: 3
    edited March 2010
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    Laura you don't have to worry about me, but thank you for your concern. Yes, I declined Chemo and Herceptin because in April 2008 it was just a trial and like everything in life, there was not a 100% that that treatment would help and the risks of getting other stuff specially with Herceptin out weighed the benefits, so, that's why I decided not do it. I am not sure if I posted but last March I had LCIS  (RB) and I had totally different DX, I had a core biopsy, I was put on Tamoxifen, I didn't want to take it either but finally I started in September and I feel great. I do go to Dana-Farber and MGH. Hope you are doing well.

  • lmnop35
    lmnop35 Member Posts: 27
    edited March 2010
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    I was dx with DCIS in early Feb and had a BMX on 3/16. My pathology shows one invasion of 1 mm that is HER+. The initial biopsy was ER+, but the remaining DCIS and the invasion have both been labeled ER-. I see that most of you did not receive chemo or Herceptin, but my surgeon and plastic surgeon both feel this is a real possibility for me. The complication may be my age, which is 35. I have also been trying to conceive for about 3 years and chemo obviously makes that a much bigger challenge.

    I have not yet seen an oncologist but I have a couple of appts set up for next week. I thought all this was over with the BMX, but with this microinvasion I feel as though the bottom has fallen out yet again. So many heartbreaks over and over. Being confined to the house during my recovery hasn't helped matters either.

    I would like to get your opinions on the why/why nots of chemo in your situations. I also read something in a pamplet from the hospital about there being a test to find out if the invasion was into a blood vessel. I had not heard anything like this before. Anyone know anything about that?

    Thanks!

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Imnop-

    I was 38 at my diagnosis along with 3 children and my youngest only 8 months old that was 2 years ago. At my biopsy I was slightly ER+ but after my lumpectomy I was ER-,PR-, but her2+. 

    I sought out numerous opinions and all my doctors after reviewing my pathology, felt the risks of chemo/herceptin outweighted the benenfits for me.  I am not a doctor but my advice to you is to seek out several (atleast 3 if not more) opinions as far as how you should proceed.  Research your doctors to be sure that they are experienced with her2+ cancers.  What state are you from?  Any other questions, please feel free to post them.

     

  • Patriotgirl
    Patriotgirl Member Posts: 14
    edited March 2010
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    Hello Ladies,

    It is so humbling to be in the cancer club.  I am very new to this whole thing and am still going through intial processing.  So far I have had a lumpectomy for my DCIS.  The pathology report from that showed that I have 3 microscopic foci of invasion so am going back in next week for sentinel node biopsy.  Tomorrow is my first team meeting with more medical professionals.  It is all a bit overwhelming.  I am not afraid, but I feel emotionally stagnant.  Has anyone else experienced this?  I haven't shed a single tear and the whole thing seems as though it is happening to someone else.  I'm sure this is temporary.  The most difficult part has been all of the attention from everyone - constant "how are you" phone calls!  I shouldn't complain about people caring about me but it tends to put pressure on me to have answers!  Thanks for letting me vent.  I'm so glad to have the right group to chat with.

  • lmnop35
    lmnop35 Member Posts: 27
    edited March 2010
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    Liz,

    Thanks for your input. I'm going crazy thinking of having to go through chemo. I just can't stop crying. I had really come to terms with losing my breasts, but this is just too much. Did you do an oncotype test? Did your doctors give you some idea of your recurrence rate?

    I live in Raleigh, NC and I am planning to see several oncologists. I've received referrals from my surgeon and another patient of my fertility doctor actually. I feel confident in the doctors I'm going to, but I will have to ask them specifically about their HER2+ experience.

    Thanks for your help.

  • Jenna1961
    Jenna1961 Member Posts: 25
    edited March 2010
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    Welcome Patriotgirl!

    Did you have clear margins after your lumpectomy? Also, it would be great to have more than one node analysed.
    As for the tears - this will accumulate - till one point. I first cried at our GPs office when my husband and I were invited to be seen, how we cope etc.
  • fionn
    fionn Member Posts: 21
    edited March 2010
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    Hi - i was diagnosed 5years ago and back then there wasnt as much information. Where i live things seem to be differently termed. I had a 1.3cm tumour and as the oncon said a very tiny speck on one lymph node. I had bilat mas and the clearence margin was 3cm from the chest wall. My tumour was estrogen resceptive so I was given 4chemo and tamoxifen. Could you please tell me what this means in your terms.ie stage etc prognosis etc. (it was a grade 3)

  • Jenna1961
    Jenna1961 Member Posts: 25
    edited March 2010
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    Imnop35:

    I can understand your frustration - it is very hard to be in such a gambling situation. If only we could ask our bodies "has it spread or not?".
    Did you have any nodes analysed? In my case, a micromet in the node was a reason for chemo and Herceptin.
    Interesting, I went through a fertility treatment too. That was ten years ago. I remember the estrogen level was so high, I had a high pitch sound in my ears for days.

  • fionn
    fionn Member Posts: 21
    edited March 2010
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    Hi- I had 5nodes removed and 1 was infected. I know i am estrogen resc but what does PR-HER2+ mean exactly

  • Jenna1961
    Jenna1961 Member Posts: 25
    edited March 2010
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    fionn,

    PR- means progesteron negative i.e. does not react to progesteron, not very often relevant for the decision making
    HER2+ means that there is an overexpression of HER2 protein, which is a marker for a more agressive cancer

  • fionn
    fionn Member Posts: 21
    edited March 2010
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    Thanks Jenna- I must check for sure with the onc on my next visit, then i will have a much better knowledge of my situation. A few of my friends have flown to America for treatment as your country has a much better health service and is more advanced on the treatment aspects. Sorry if i seem to not know a lot about bc but when i first found out i sorta buried my head in the sand and it is only now that i would like to have a better informed idea of what exactly i am dealing with. Once again thanks for your help.
  • Jenna1961
    Jenna1961 Member Posts: 25
    edited March 2010
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    Hi fionn,

    It seems to me that you really had an appropriate therapy. You would get the same here (in Canada). The new thing now is that sometimes they analyse the nodes separately.
    Take care,

    Jenna

  • laura347
    laura347 Member Posts: 58
    edited March 2010
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    Hi Imnop, I am sorry you have had to join us...YUK! But you will find good support here so welcome.

    I will be VERY curious to see what your onc will say, of course a lot of us were not given herceptin or chemo so we are curious. I also had bilateral mast, dcis, microinvasion her 2 pos. It is all scary, but pray and hold on, one day at a time it gets easierSmile Do let us know

    Laura xoxo

  • amyob
    amyob Member Posts: 56
    edited March 2010
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    Just had my exchange on Tuesday and I feel great!  No tubes, no pain.... very easy this time.  Thanks for all the support.  Dear Imnop,  My heart breaks for you.  Most of us went into surgery with the hope that it would be contained, only to find out there was a "little problem".  We have all gone through very similar feelings and have made it through unbearable misery.  You will, too.  About the oncotype test...  I was really pushing for it, but ultimately conceded that it is not a test that applies to Her2neu.  I have not heard of age being a deciding factor if the tumor is 1 mm or less.  I would most definitely seek out at least 3 opinions, especially considering how important this decision is.  I had 1 onc suggest Tamox, 1 say chemo/herceptin, and 2 (bc gurus) say "no further treatment".  Studies have suggested that the recurrence rate for T1mic is identical to pure DCIS.  My bilateral was Oct. 3rd and I made my final decision, "no further treatment", on Dec. 30th.  You have time to think things through.  I was told chemo should be started within 3 months.  If you don't end up doing it, then it doesn't matter anyway.  We are all wishing you well at this very difficult time.         

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Imnop-

    I did not have any additional testing done other than the hormone status, her2 status, and node status.  I was told by all my oncologists that no further testing is necessary after they reviewed my pathology.  One of my oncologist did order a bone scan and CT scan of my chest, abdomen, and pelvis but this is not a common practice for early stage breast cancer.  My cancer was as one or more of my oncologists worded "the agressive of the agressive" since it was grade 3, hormonally negative and her 2+++ but it was also caught very early.  One oncologist (from a different hospital) who used the words "agonizing over treatment" did order my specimen to re-examined to be sure there were no missed mico-invasions etc.  In the end, all the consulting oncologists agreed that the risks of chemo/herceptin outweighed the benefits for me. This was music to my ears and I pray to God that they were right. Having all these consultations is reassuring.

    I always advise at least 3 opinions, with the majority ruling and ofcourse follow your heart as to what you need to do to move on and get past this initial stage.   The good news with the agressive cancers, is that the greatest risk of recurrence is with in the 1st 2 years and after that your risk drops. I have been told this and have also read this. 

    Presently, I am being seen at least every 3 months by one of the doctors from my team which consists of 2 medical oncologists, radiation oncologist, surgeon, primary.  Usually you have only one medical oncolgist but I choose to be follwed by 2 rotating the visits between them.      

    Crying is perfectaly normal, I went through it and I'm sure most have.  You go through different stages when you are diagnosed with a life threatening illness usually it starts off with fear, crying, anger  but in the end there needs to be acceptance.  You have to accept what has happened to you and that you can't change it.  Life never holds any guarantees whether you've had cancer or not. After all, most of us don't spend our days and nights worry about getting into a car accident or getting hit by a car but it could happen. You also need to find an anchor that can help you, for me it was my family (husband & 3 young children) and my faith.  Guess what, I'm  over 2 years out from diagnosis and the 3rd week of May it will be 2 years from when I finished treatment.  

    Also, you have a lot going on, trying to have a baby but yet now you have an obstacle.  Don't lose hope, there are soooooo many women who go on to have children after breastcancer. I think we may have a thread pertaining to this topic on this site.  I had an 8 month old when I was diagnosed which means that I had breatcancer when I got pregnant and I was definitely pregnant while I had breast cancer (but I didn't know it).  My surgeon told my that it usually takes atleast 5 years for the breastcancer to show up on mammograms or other imaging.  If you chose to conceive, being hormonally negative is a blessing since your cancer is not feed by estrogen or progeterone.  

    I'm sorry for any typos and I hope I made sense.  Feel free to PM me or just reach out to any of us.  This thread is very new so there aren't many posts here yet and our diagnosis(microinvasive DCIS that is her2+++) is very rare. Meaning it's not common to catch her2+ cancers at such a very early stage. 

    Wishing you well.

    Liz

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Amy-

    I'm SOOO HAPPY that your exchange went well, thank you for sharing your wonderful news with us Smile.  

  • lmnop35
    lmnop35 Member Posts: 27
    edited March 2010
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    Thanks for the additional information. I'm feeling a little bit better today. I was agonizing over the fear of doing chemo vs. not doing it. Feeling the fear of each, when I have no idea what I'm supposed to do. I realized that I went through this paralyzing fear when I was deciding b/t lumpectomy & BMX and I worked through it and came out with a decision I can live with.

    I got the slightest bit of good news today: I met with my surgeon for my post-op visit and we went over my pathology and she said that there was no vascular invasion. I don't know if this means anything in the real world, but in my mind it's logical that if there was no cancer found in my blood vessels or lymph nodes then it should be contained.

    I have 2 oncologists set up now, but I think I will set up another (and maybe more). I have settled in my mind that I will do chemo if recommended at all so I will need lots of reassurance that it's not necessary.

    Amy, I'm glad to hear about your exchange. I'm so jealous! I haven't even started inflating these rocks yet and I'm already SICK of them. Can't sleep, can't breathe, sure can exercise - YUCK! How real do they feel? Does your chest feel 20 pounds lighter? Can't wait!!

    I'd love to hear anyone else's experience on how your doctors decided against chemo.

    Thanks!

  • amyob
    amyob Member Posts: 56
    edited March 2010
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    Liz, you really have a gift for putting people at ease. Smile Thanks for sharing the joy over my new boobs!  Don't worry, Imnop, the TE thing will get easier soon.  You will even be able to exercise, but I remember how you feel as though it were yesterday... all too well.  My TE's were in for 5 and a half months, so I was totally ready to lose them!  The silicone implants feel (from the outside) and look very real.  Sleeping is now almost comfortable - hard to imagine.  My chest feels at least 20 lbs lighter and my neck and shoulders have stopped aching.  I hope this gives you something to look forward to :)         

  • Liz08
    Liz08 Member Posts: 100
    edited March 2010
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    Imnop-

    yes, having no vascular invasion is actually great news Smile!  Keep us up to date on how your visits with your oncologists go.   

    Also, you may want to skim the link that on the thread about small her2+++ tumors.  One of the oncologists in the article, Dr. Eric Winer from Dana Farber is one of the consulting onocologists that reviewed my pathology. 

    Amy-

    You always know how to make me feel good Kiss.

    Have a great weekend girls Cool

  • shelleydodt
    shelleydodt Member Posts: 6
    edited March 2010
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    Would everyone please watch the You Tube of Dr. Brian Czerniecki on his vaccine for DCIS Her2/Neu +. I had it and enrolled in a vaccine clinical trial in Philadephia. When they did my surgery, all the DCIS and Her2/neu was GONE!!! My body was made to be immune to it coming back elsewhere. Everyone PLEASE check it out. Microinvasion is OK to get in the trial. All epople in the trial get the vaccine and it takes 6 injections. It was a piece of cake and I had NO side effects. Please check out Penniesinaction.org and you can read my whole story. I am Shelley Dodt and now that my cancer is under control I really want to help newly diagnosed and those yet to be diagnosed. There is HELP AVAILABLE that your doctor may not know about yet. 

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