Invasive Ductal Micropapillary Carcinoma

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  • lifelover
    lifelover Member Posts: 553
    edited July 2012

    Hi trinal, sorry you're here but do keep us informed of anything new on this type of BC.

    I hope all goes well with your surgery and chemo and you sail through it. 

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  • trinal
    trinal Member Posts: 9
    edited July 2012

    Hey ladies,

    Tomorrow I will be 3 weeks post BMX+TE and LND and 6 weeks past failed lumpectomy and SNB.  I had my port placed 3 days ago. First chemo infusion is Thursday Aug 2. I'll have 4 rounds of AC every 2 weeks then step down to Taxol every week for 12 weeks including starting myyear of Herceptin every 3 weeks.

    I'm just so sore and tired of feeling sore and tired.  I feel like I'm wearing a shirt that's too tight and restricting, but that shirt is my skin. Over that is this durn tight surgical bra.

    At 39 years old, I still have a lot of life to live, and I'm looking forward to the day I can remember back at this blip in my life. Right now I just pray each day gets a little easier.

    Hugs and prayers to all my micropapillary IDC sisters! 

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited July 2012

    Hi Trinal,

    It will be a blip in the mirror before you know it. There is a reason the windshield is so much larger than the rear view mirror. Keep looking forward, and take it a day at a time. The chemo made me tired occasionally. I was 42 and caring for 3 children. So some days, I took it hours at a time : )

    I am a few months from a stage 3 her2 neu micropapillary diagnosis, and I am loving my life.

    Hugs my dear!!

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  • littletower
    littletower Member Posts: 333
    edited August 2012

    Hi All;

    When I first posted in 2009 asking for anyone who had this diagnosis there was zero reponse. I'm so glad there's now a thread to share the dread (ha, ha). My initial research was scary as hell. It's good that there seems to be more debate about the exact nature of our sub-type.

    In light of what my pathology I applied for and completed the Johns Hopkins Breast Cancer Vaccine trial. It was arduous as hell, but I'm glad I did it. I go for scans on Monday the 6th so I suppose we'll see.

    Hugs to all,

    Adele

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  • lifelover
    lifelover Member Posts: 553
    edited August 2012

    Hi Adele - thanks for being here and posting.  Please let us know the results of your scans.

    I just had blood work done and all my results were excellent.  I have been NED since October 2011.  Happy as a lark and exercising 5 days a week - feeling amazing!  I wish the same for everyone! 

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  • littletower
    littletower Member Posts: 333
    edited August 2012

    Scans are clear! Lots of anxiety on this one. I'm very relieved. Hugs and good health to all!

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  • lifelover
    lifelover Member Posts: 553
    edited August 2012
    Congratulations Adele!  Big hugs right back at 'ya Laughing
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  • erf
    erf Member Posts: 1
    edited August 2012

    Hi all!  My mother was just dx with IDC with micropapillary features (biopsy results came back in on Monday).  She now has to wait until the later part of September to meet with the surgeon.  Is this normal?  I keep seeing people who are diagnosed and then a week later are having surgery. 

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  • littletower
    littletower Member Posts: 333
    edited September 2012

    Hard to say what's normal, but she may want to get a second opinion. It's always a good idea anyway and that does sound like a long time. Good luck and hugs to you both.

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  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited September 2012

    Hi -  My name is Mary.  I just found out I have IDMC !  I discovered it myself on my pathology report....oncologist never told me or treated me for it....!!!  Is anyone out there?

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  • lifelover
    lifelover Member Posts: 553
    edited September 2012

    Hi Mary,

    My oncologist did not place much emphasis on having this type of diagnosis.  I read the research about it on the internet.  Perhaps it's better not to scare yourself by reading the research.  In any event, some of it is a bit out of date.

    I trusted my oncologist.  I don't worry about it now.  I keep as positive a "mind set" as I can and take plenty of exercise, get lots of sleep, eat healthily . . . in general, I find as much joy in living as I can.  I'm feeling quite amazing these days.  I'm one year post-chemo and I can't quite believe how good I feel.

    Best wishes on your journey.  Let us know if you have any questions.  We will try to answer them if we can.

    Kim 

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  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited September 2012

    Hi Kim -  Sorry to hear you are on the same path, but happy to have some one to walk with.   I did not mention that I used to be a medical unit secretary, so have had a lot of medical training.  But, I was not the "up" on oncology.  I am the type that would rather know "the truth".  I did read a lot of the research and it does scare me a bit, but would rather know then not know. 

    Problem was I "did" trust my oncologist who did NOT find it and that makes me very upset. He should have know!! Sorry for getting upset, I just found out yesterday.  PROBLEM is he never gave me preventative chemo which I can tell now I REALLY needed.  Big question now is, is it to late for chemo. 

    Does everyone you know with this type get chemo?  What is the latest that is new about this type of bc.?  Mary

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  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited September 2012

    Kim - I read that if a women has the micropapillary type it is automatic stage 3 is that correct?  Or have you heard that?  Mary

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  • lifelover
    lifelover Member Posts: 553
    edited September 2012

    Hi Mary, 

    I think that is true.  My tumor was only 1.4cm but it was diagnosed as a Grade 3.

    Kim 

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  • lifelover
    lifelover Member Posts: 553
    edited September 2012

    Hi again Mary,

    Responding to your previous post now.

    The type of chemotherapy used differs from Country to Country and possibly, from hospital to hospital.  Here in the UK chemo for BC is usually FEC-T (the FEC being a cocktail of 3 drugs and the T being taxotere).  That is the type I had.  3 weeks of the combination FEC and 3 of taxotere (also called docetaxel).

    The micropapillary pattern was found in my initial core needle biopsy but it took the path work from my mastectomy to diagnose it fully.  Sadly, the cancer cells were probably there the year before but a fine needle biopsy did not detect it.

    I agree that it is better knowing but I don't want to frighten anyone.  I read loads of information on the internet (some is posted earlier in this thread) but my oncologist told me not to worry about it.  I have had almost 2 years to think about it all and at the moment I am trying to enjoy life to the fullest.  Without sounding morbid, I live each day as if it were my last.

    I will be doing more research and posting it here if I find anything new.  Please do post any information that you find Mary. 

    Kim 

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  • lifelover
    lifelover Member Posts: 553
    edited September 2012

    Sorry Mary - forgot to say - it is not too late for chemo as long as your general health is fairly good.  Call your doctor's office and if you can't speak to the doc ask for a nurse to talk to.  

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited September 2012

    Grade 3 and stage 3 are 2 different things. Staging has to do with tumor size and lymph node and skin involvement. Grading has to do with the speed at which the cancer grows. That is my understanding. My onc suggested that once the cancer has spread to the lymph nodes, the outcome and treatment is the same as every other type of BC that has mets to axillary lymphnodes. Every time I read about invasive micropapillary BC, I wish I hadn't! For now, I am done treatement. I finished a full year of herceptin on August 3rd. Had my port out Sept 4th, and now meet with the onc every 3 months for tumor markers and to check my cell counts, unless I have any "new symptoms."  It's a waiting game.

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  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited September 2012

    Hi Lifelover and Southamptonmom -  Thank you both for your posts.  It is a GREAT HELP!!! Thanks for posting all the informative information on the micropapillary bc.  It has been a big help.  I am getting a new oncologist in about a week.  I should have told you a bit more about my situation.

     I thought the preventative chemo needed to be given within the first 12 weeks post surgery.  Due to problems with the laboratory (I could not get the Oncotype DX test) which went on for almost 6 months, my treatment was not addressed.   I had elevated estrogen (Estradiol) and very bad vitamin d (14 to be exact).  We did address these situations to help the ER & PR situation, but that was it.  He told me the love vitamin d and high estradiol indicated a more aggressive breast cancer, but did nothing about it. 

    I am afraid so much time has gone on that the circulating cancer cells have had a chance to grow and clump together.  Anyway, I will ask my new oncologist on Oct. 8th if it is too late for chemo. 

    I have a "dog ear" area where they closed after the mastectomy which we thought was scar tissue but,  I am now afraid might be more cancer.   It appears to be growing a bit.  My primary doctor thinks it is just "laying down" after the surgery, but with the new news about this micropapillary situation, I think it should be biopsied.  Time will tell.

    Thanks for all the support.  I try to enjoy as much of life as I can, but have a lot of upset moments.  I am a widow, 67 years old with no children.  I do have 2 wonderful indoor cats.  I think I am still in shock over this micropapillary situation and how it changes things.....

    Mary

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  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited September 2012

    Hi Lifelover and Southamptonmom -  What percentage on your pathology report was your Micropapillary?   Also, did either of you have low vitamin d levels?   thanks  -  Mary

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited September 2012

    I don't the the answer to either question. I have been taking vit D3 1000 for a few months now.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited September 2012

    Hi Grils - just checking in. I'm 2 years out from the micropapillary dx and 3 years out from the nasty HER2+ve lobular. Due for an MRI next month and not looking forward to it. Mammo and ultrasound ok 6 months ago. Being monitored every 6 months is starting to take it's toll on me.

    Hope you are all doing well.

    Sue

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited October 2012

    Just wanted to give out my email address for anyone who needs to talk. rroccamo1@verizon.net

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  • w6uqfcgomeo
    w6uqfcgomeo Member Posts: 31
    edited October 2012

    Hi Southampton:

     This is Mary ....Please let me know how your doctor monitors you since Micropapillary is so aggressive.  I see my new oncologist tomorrow.  They told me he knows something about it....Sure hope so...Mary

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  • lifelover
    lifelover Member Posts: 553
    edited October 2012

    Hi Mary,

    My biopsy report did not specify the amount of micropapillary.  My vitamin D levels were normal last time they were measured.

    My oncologist does not know much about micropapillary and therefore he couldn't give me any survival statistics.  I try not to think about it.

    Mary, please do let us all know what your oncologist says about micropapillary.  That will be very interesting!

    Hello all you ladies out there - hope you are all doing well.

    Kim 

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  • MaddyMac
    MaddyMac Member Posts: 75
    edited October 2012

    Hello Ladies - I've been here before, but lots of people I don't know.



    Lifelover, look at your hair, darling! You look wonderful, and I'm so glad you are post-chemo and enjoying.



    I was diagnosed in May of this year; I found the tumor doing a self-exam, and have now had surgery, which (fingers crossed) has gone very well, though 4 of 14 biopsied nodes were positive. Yikes, but might be OK anyway.

    This was followed by AC which came with some pretty steep side effects including neutropenia and hospitalization from resulting pneumonia. I just started a 12 week, weekly Taxol, which so far is easier in some respects. Then 6 weeks of radiation followed by 5 years of Tamoxifan and then quarterly scans for the rest of my life.



    WHEEEE, the fun of it all!



    Mary, I am 49 years old and widowed, with an aging border collie; shoot me a note if you want to talk, as we seem to have some things in common.



    Tonight I'm feeling a bit angry, and a bit of grief. I don't have any info you guys haven't got. I stopped researching online. However, my Onc and surgeon both remarked that Micropapillary is biologically aggressive, so aggressive treatment is mandated.



    Anyway, blessings, and I wish you all peace.



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  • lifelover
    lifelover Member Posts: 553
    edited October 2012

    Hi MaddyMac and thanks for the compliment on my hair.  I'm so sorry that you have been through so much and also had neutropenia and pneumonia - you're on a really rough ride - ain't  fair!!!

    Anger is a natural response to the loss of control we feel having a disease that might kill us.  Don't deny it and express it in as healthy a way you can.  I told my GP that I was angry and he asked me if I was going to kill anyone.  I took it in the funny way it was meant but what a question to ask!!!  Anyway, I was referred for counselling and it really helped me through the many crazy emotions we go through.

    Aggressive, yes but keep fighting ladies!  Don't give up.  

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  • lisadel1
    lisadel1 Member Posts: 5
    edited October 2012

    geewhiz,

    Were you diagnosed over 3 years ago with micropapillary? That is such good news to hear, it gives us all hope. I have read alot of people with mixed reviews here stating they have read that this cancer is just one of the more aggressive...Triple negative is also aggressive. Do you believe they are similar in their aggressiveness....its confusing to understand with so many different grades, sizes, stages etc....have you heard of any long term survivors with this type of cancer?

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  • lifelover
    lifelover Member Posts: 553
    edited October 2012

    Hi Lisadel1,

    I was diagnosed in February 2011 - soon to be almost 2 years ago :)

    The presence of micropapillary cells means the cancer is more aggressive but it doesn't mean that it is untreatable.  Even though I had extensive lymphovascular invasion all of my scans to date have been clear of any spread or recurrence.

    I don't know about the survival statistics and I'm not sure there are any as of yet because micropapillary has only recently been identified.  Hopefully some new research is taking place out there.

    To be fair, I try not to think about it.  I live each day to the full.  I know what the current research on the internet says - and it is a little scary.  My oncologist says not to focus on it and remember that all my scans have showed no evidence of disease :)

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  • lisadel1
    lisadel1 Member Posts: 5
    edited October 2012

    Hi lifelover,

    I was just diagnosed on October 24th and I am sick over this...the statistics are horrible, stating that most of us will die within 3 years of original diagnosis.  I wish I never read that.  I am having a hard time just trying to get through the day thinking I am going to die...just turned 50 in August and am not ready to die.  I see everyone has there dx listed on the bottoms of their posts but I don't know how to do that.  I have a 1.4 cm tumor, Stage 1, grade 3, no nodes with LVI. I had a lumpectomy based on my original path report because I didnt expect this dx, I did ask the surgeon if I should now get a mastectomy and she didnt think it would be necessary....I wish we could find more people who have survived this cancer it would give us all more hope.  All that I have read is bad...sorry to be a downer, just in shock at this point....

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  • littletower
    littletower Member Posts: 333
    edited October 2012

    Hi Lisa, I am three years out and as you can see from my tag line, my pathology was dire. I did opt to participate in a vaccine trial at Johns Hopkins because of the aggressive nature of my tumor. Take a deep breath, do the treatments you need to do and live! It's the best any of us can do.

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