Invasive Ductal Micropapillary Carcinoma

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  • Journeygirl
    Journeygirl Member Posts: 13
    edited January 2015

    Leftyloo,

    I understand your feeling of shock.  Feeling very healthy and being told you have cancer doesn't make sense.  I guess we've been given the opportunity to see things in a different perspective. 

    Have you started your chemo treatment?  If so, how is it going?  My oncologist has also recommended Taxotere/cytoxan or an even more aggressive treatment consisting of Taxol first and then Adriamycin/Cytoxan.  It will be interesting to see if it is possible to work full-time through all of this.  I guess one thing this is trying to teach me is to take one day at a time and make the best of it!

    Good luck with your treatments,

    Journeygirl

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  • Journeygirl
    Journeygirl Member Posts: 13
    edited January 2015

    Hello amylsp,

    Good advice to get another opinion.  I'm looking into that as well, and I do have an appointment set up for next week with a different oncologist. I'm beginning to lean heavily towards getting the chemo treatments.  I just don't feel there is sufficient evidence yet on the Onco DX test to support  eliminating chemo in my situation.  I would hate to regret in 5 years if it returned that I should have done the chemo.  Hopefully I won't have any long term side effects, but I guess I'd prefer to gamble that way instead of having regrets. 

    How have you been feeling through the treatments?  You must be finishing up with the chemo.

    Journeygirl

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  • amylsp
    amylsp Member Posts: 188
    edited January 2015

    Hi Journeygirl, I have my 5th chemo this Friday and the last chemo on February 13th. Chemo is definitely difficult but doable. Most of my side effects are gastrointestinal (heartburn, indigestion, etc.), and are worst the first week (my treatments are spaced three weeks apart). Fatigue is the other big SE, but I've been able to continue working on a more part time basis and carry on with most other aspects of my life. The 4th treatment was the worst so far, and I expect #5 and 6 will be a little worse, but I try to take things day by day for the most part.

    Good luck with your decision. It's very difficult with all the unknowns, but finding a way to be at peace with your decision will definitely help in the long run.

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  • Journeygirl
    Journeygirl Member Posts: 13
    edited January 2015

    Amylsp, Good to hear you're managing during treatment. Just had my first chemo treatment today and it went well. So far feel good but have been warned that will most likely change in a few days once the infused anti-nausea medication and steroids wear off. Only 2 more treatments for you! Hang in there!

    journeygirl

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  • leftyloo
    leftyloo Member Posts: 23
    edited February 2015

    hi Journeygirl

    i haven't looked at this forum or even this website for a longish time - are you on the facebook page for winter chemo girls? if not, i can hook you up. :) it's a very active page with all manner of postings, rantings, and show & tellings!

    all in all, things are good and i had my last TC treatment on february 5. i found the effects cumulative for my chemo experience... very glad there were just 4 blasts to bear!

    i hope you're doing well and are on your way to being finished with this annoyance!

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  • Chloe2014
    Chloe2014 Member Posts: 4
    edited February 2015

    hi. I've been recently diagnosed with IDC / 60% micropapillary component. I'm 95>% ER and PR+. Still trying to determine if I'm Her2+ or - yet. I've had three tests done (1 IHC and 2 FISH) that came back equivocal and the latest was neg, but hoping for a different test to give the final determination! My BS and her PA seem to brush over micro papillary as no big deal, but all the research I've been doing makes me uneasy. I am scheduled for a lumpectomy re-excision in two days and have my first consult with MO on Mar 2 so hope to find out more then - about my diagnosis and treatment plan. Glad I found this bl

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  • amylsp
    amylsp Member Posts: 188
    edited February 2015

    Welcome Chloe. I agree about the research on micropapillary cancer being less than encouraging. What I have read though from a few sources is that early stage micropapillary cancer with less than 4 involved nodes carries the same prognosis as similarly involved run of the mill IDC breast cancer. Hopefully you won't be Her2+. But even if you are, they have great treatments for that now.

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  • Chloe2014
    Chloe2014 Member Posts: 4
    edited February 2015

    I'm lucky! No lymph nodes involved! Just getting ready for my re-excision tomorrow and hope for clear margins!

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  • amylsp
    amylsp Member Posts: 188
    edited February 2015

    Good luck with your re-excision. It took me three tries to get clear margins!

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  • Chloe2014
    Chloe2014 Member Posts: 4
    edited February 2015

    thank you! Just got home from surgery. Much easier than the original lumpectomy. I really hope I don't need a third surgery! Hope you are doing well now

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  • Journeygirl
    Journeygirl Member Posts: 13
    edited March 2015

    Hi Chloe2014,

    Thanks for joining our discussion blog. There are definitely times when you need the extra support and we are here for you. It took 2 tries for me and I agree, the second removal was much easier. Great to hear you don't have lymph node involvement!

    Tammy

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  • Journeygirl
    Journeygirl Member Posts: 13
    edited March 2015

    Hello Leftyloo,

    I am on facebook but not the winter chemo girls site. I would appreciate being involved with that. At the moment, I am finding my positively waning. Currently completed the third T/C chemo treatment and I'm beginning to struggle physically. Very achy, fatigued with intestinal issues. Working has been hard and I'm planning on cutting back work to four to five hours a day. Fortunately, only one T/C treatment to go. Then on to radiation. Is your radiation going to involve your lymph nodes? My radiation oncologist recommends I have both underarm and neck included.

    Journeygirl

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  • DownunderinT
    DownunderinT Member Posts: 6
    edited March 2015

    Hi thanks for starting this Lifelover and good to see you going well.

    This is my first post and I am glad to see some Aussie girls on here. Thanks to you all I feel more confident in my direction with first chemo today. I loved the ice pack boxing gloves. I have a strong support team around me as we all remember mum passing ten years ago. So reading your posts answers queries I haven't got her to chat about. So thanks for all the positive posts.have always been asked back after breast screens and this time (just on early retirement and cleared house, rented it ready for big world tripthe day tests results came in). Children to rescue.love em.so my results were that bs saw one cancer at micro calcification cluster and ultrasound found different one nearby. On excision one was general dais but other was microcapillary and over 30 %divisio. Advised. Gene tests costly in Australia so met onco of team. We agreed on chemo due to the microcapillary findings overtime and her consult Oncos agreed for their similar patients. I hope this helps Journey girl. Also here is best yoga laughter videos if you want a let go distressor. http://www.robertrivest.com/laughteryoga/whatislj/...

    Thanks and may your spirits strengthen you for your journey.

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  • leftyloo
    leftyloo Member Posts: 23
    edited April 2015

    hi journeygirl, i've sent you a private message about the fb group.

    i had a mastectomy in september with clear margins, nodes clear, and no radiation was recommended.

    chemo was recommended because of the oncotype dx test coming back in the middle for reoccurence, and because it was an aggressive cancer. my 3rd and 4th chemo treatments were the worst - hope you're doing well... there's no shame in taking off time from work (at least a few days after chemo), so do it if you can!

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  • swissrn2002
    swissrn2002 Member Posts: 27
    edited May 2015

    Hi, I'm new to this forum, I fact my first. I was diagnosed with micropapillary carcinoma in March. I had a mammogram in June only showing dense breast tissue. I felt hardness in my right breast and just assumed it was from me decreasing my HTR pills to every three days. The tumor felt approximately 5cm, the MRI showed about 11cm, but with my modified radical mastectomy it measured 8.2 cm. I had 5/27 lymph node involvement. Im triple positive. I'm currently doing my 3rd of 4 AC treatment , then I was lucky to get onto a clinical trial starting July 1st. I'll be on Kadclyla (chemo and Hercepton combined) and Perjeta. Kadcyla is a targeted chemo, so my hair show start to slowly grow back. I'm happy to see several others with the same micropapillary, you begin to feel alone. I too, will not take to heart all the poor prognosis readings on the Internet. We have come so far with chemo, and many more people are beating this.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2015

    Hi Swiss-

    We want to welcome you to our community here at BCO. We're sorry for the circumstances that bring you here, but we're glad you've joined us, and hope you find support when you need it most!

    It can be very isolating to have a rarer diagnosis, but as you can see, you are definitely not alone. It's good you've found a treatment plan that you're happy with, and that is wonderful news about the clinical trial! Treatment of breast cancer, and even rare forms of breast cancer, has come a long way, and like you said, many more people are beating this!

    We're keeping you in our thoughts, and look forward to seeing you on the boards!

    The Mods

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  • leftyloo
    leftyloo Member Posts: 23
    edited May 2015

    hey swissrn, i'm glad you posted!

    is your trial specifically targeting micropapillary cancer?

    the typical 'therapies' seem to consider the degrees of a tumours' advancement, genetic markers, and hormone receptiveness/exposure, but i suppose there are no selective targeted treatments for different types of cancer yet... a big gap in understanding still, i wonder?


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  • swissrn2002
    swissrn2002 Member Posts: 27
    edited May 2015

    lefty, I really don't know. I'm assuming since micropapillry isso aggressive and rare, they don't get as many opportunities to trial it. This trial is in phase III

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  • NATSGSG
    NATSGSG Member Posts: 231
    edited June 2015


    lifelover

    Hope you are well and recovering...I'm visiting your thread to share with you a link that contains 467 scientific articles of Invasive Ductal Micropapillary Carcinoma that I hope will be of use and helpful to you.

    http://www.ncbi.nlm.nih.gov/pmc/?term=Invasive+Ductal+Micropapillary+Carcinoma

    In the interim, please consider going to this site, the Society for Immunotherapy for Cancer (SITU) and see if they have anything on this disease using immunotherapy (current hot topic in cancer treatment) to treat it. Consider asking them to put you in their mailing list for any latest development.

    http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

    PPS. This VIDEO link tells you what the current hot topic in cancer treatment, Immunotherapy is. Fascinating to watch.

    http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

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  • lifelover
    lifelover Member Posts: 553
    edited June 2015

    Nat, thank you so much for posting this.

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  • Journeygirl
    Journeygirl Member Posts: 13
    edited June 2015

    Hello Everyone! Just thought I'd give a quick update. I'm done with T/C and now halfway through radiation. The chemo side effects are still an issue as for some reason seems chemo attacked my leg muscles. They still ache but getting better every week. Thankfully radiation hasn't been too difficult yet. My hair is coming back very thin, soft and gray. Glad I look good in hats! I have another surgery scheduled in July to remove my ovary. My tumor is very estrogen positive so was recommended to either take medication or remove the ovary. I'm not in menopause yet but guess at my age I really don't need it anymore so thought it best to just be done with it instead of taking more medication.

    I think the toughest thing is to allow myself to slow down. With work and a daughter graduating its just been go, go, go and very wearing physically and mentally. Anyone else feel they are mentally losing it? I can't seem to focus and my memory isn't what it was either.

    Swissm2002, you'll have to let us know how your trial goes and update us in the future the outcome. Wishing you the best with hope and love. I participated in the Susan B Koman walk for the cure in Minneapolis and was amazed at the number of people affected by this disease. We are definitely not alone and really feel there will be dramatic advancements soon.

    Best to everyone,

    Journeygirl

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  • swissrn2002
    swissrn2002 Member Posts: 27
    edited June 2015

    I'll definetly will let you know how the clinical trial goes. I'm on my last AC Wednesday, then wait three weeks to start the trial. I sure hope I tolerate it the AC wasn't as bad as I thought it would be, just one day of extreme nausea and some fatigue. Wish everyone luck. Glad to know we aren't aLone with this vicious disease


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  • Journeygirl
    Journeygirl Member Posts: 13
    edited August 2015

    Hello Ladies,

    I am finally done with all the treatments and surgeries! I had my ovary removed a couple of weeks ago, with a quick recovery and back to work in 10 days. My energy and cognitive function have improved immensely over the past couple of weeks. I may even need a hair cut. I'm actually really enjoying the short hair. So easy! I must say, it has been quite the journey since my diagnoses last November and I'm determined to be better for it. So much love to give and life to live. Warm thoughts and hugs to you. We can beat this!

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  • lifelover
    lifelover Member Posts: 553
    edited August 2015

    Congratulations Journeygirl!!!! Keep up the positivity and live life to it's full!!!

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited September 2015

    Hi everyone. It seems really quiet herw, but I just thought I'd introduce myself. I'm Christina, I'm 39 amd 10 weeks pregnant. I was diagnosed with IDC a month ago, but after my mastectomy last week, the pathology report came back saying papillary carcinoma. I had 17 of 35 lymph nodes positive. Does that mean my prognosis is pretty bad ?

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  • amylsp
    amylsp Member Posts: 188
    edited September 2015

    Welcome Homeschool. You will find wonderful support and information on these boards. It's almost impossible, especially with a new diagnosis, not to fear the worst. I would encourage you to check out the Stage3 Forum on these boards. You will see that there are many ladies with high node counts doing well 3, 5, 10 years out. So as you can see, 'prognosis' is not something that can be easily predicted based simply on stage or node count. You're at the very beginning of your treatment process. Once your plan is fully in place and you're moving ahead, things should seem less scary.

    I also just want to point out that you should try posting in the 'Papillary Carcinoma' thread further down in this forum. Micropapillary Carcinoma (this thread) is actually a different form of cancer than papillary carcinoma. Most of these threads tend to be a little quiet. But if you post someone will eventually respond! Best wishes to you during your treament journey.

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited September 2015

    I guess I was wrong a bout the papillary carcinoma. TMY pathology report does say invasive micropapillary carcinoma.

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  • Marksgirl
    Marksgirl Member Posts: 65
    edited September 2015


    Welcome Homeschool4

    I am sorry you are here too.   It does seem like there are not many of us.    I keep rereading Amylsp's advice to you about the Stage3 forums, especially  "You will see that there are many ladies with high node counts doing well 3, 5, 10 years out.  So as you can see, 'prognosis' is not something that can be easily predicted based simply on stage or node count".   (That is great advice).   You are never a statistic. 

    When do you meet with your MO?    You will feel better when you are on the attack.    Keep us posted.   I hope you find a lot of support on the current treatment threads for the plan you have as well as threads for going through pregnancy and treatment.   But we are here too and you are in my thoughts and prayers.

    Jenny

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  • lifelover
    lifelover Member Posts: 553
    edited October 2015

    Welcome Homeschool.

    Some good news - I'm almost 5 years since diagnosis and I'm still here and feeling really well. Taking letrozole and living a fulfilling life


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  • geewhiz
    geewhiz Member Posts: 1,439
    edited October 2015

    YAY Lifelover!! Congratulations!

    Another Stage 3 survivor!

    I am just recently 6 years from a stage 3 diagnosis and training for my first half marathon!!

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