Mucinous Carcinoma of the breast

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  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    Obsolete, I felt your warm hugs this evening. (((())))) What a whirlwind 24 hour period! The bilateral mastectomy went incredibly well. I have complete range of motion of my arms and I'm not in any pain whatsoever and what's even more remarkable I'm not on any pain medication. This speaks volumes for my breast surgeon. He is a highly skilled surgeon. I have enormous respect for him and you know what, he is so incredibly sweet and humble. I really lucked out. ;0)

    Blessings and gentle hugs to all my B.C sisters.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    Obsolete, I felt your warm hugs this evening. (((())))) What a whirlwind 24 hour period! The bilateral mastectomy went incredibly well. I have complete range of motion of my arms and I'm not in any pain whatsoever and what's even more remarkable I'm not on any pain medication. This speaks volumes for my breast surgeon. He is a highly skilled surgeon. I have enormous respect for him and you know what, he is so incredibly sweet and humble. I really lucked out. ;0)

    Blessings and gentle hugs to all my B.C sisters.

  • Ktweasel
    Ktweasel Member Posts: 17
    edited September 2017

    wahoojen-

    I asked my nurse navigator if there were and MC specialists and she spoke to a doc in one of the St Louis hospitals. That doc told her she didn't think she there was one that specialized in that.

    But from what I have learned, she may not need a specialist in MC. There are many things that cut across all breast cancer types that are important for treatment--node status, hormone receptor status, tumor grade; etc. It's frustrating to be part of this tiny club but for the most part, we tend to be a group with favorable prognosis.

    I came on here when I was first diagnosed and became obsessed and overwhelmed. I returned after my surgery when I learned a lot more and had answers. How long ago did she find out?

  • Roxyd
    Roxyd Member Posts: 6
    edited September 2017

    Hi to all,

    I have not posted in a while. I had a MC of the left breast in 2014. Took Tamoxifen for 2 years then had to have 2 polyps removed. Blood work showed that I was in menopause, so oncologist changed to a new estrogen inhibitor. I have had 2 more periods since I went off the Tamoxifen, but no polyps. However after this last period they did blood work, and I am no longer in menopause! Has any one had this happen to them? I was told this is odd, but they have seen it. So I am off the newest drug until they tell me what is next. confused..

    Take care,

    Know you are not alone!

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    Roxyd, so sorry about your problems. Perhaps these threads can help you ..... good luck.

    https://community.breastcancer.org/forum/78/topics...

    https://community.breastcancer.org/forum/78/topics...

  • Dark13
    Dark13 Member Posts: 50
    edited September 2017

    Hello everyone, Thank you for all the info and encouraging words. I am 50yrs old and live in the Caribbean. I got the results from my biopsy below. I am not sure what "mucinous adenocarcinoma" is I am hoping someone here has had this and can relate. Have not had the IHC done as yet.

    My doctor recommended a lumpectomy (removal of the mass and some nodes).

    Thank you in advance looking forward to your responses.

    ULTRASOUND GUIDED TRUCUT BIOPSY OF 1.7 X1.8CM LEFT BREAST 11O'CLOCK POSITION LOCATED 5CM FROM NIPPLE 2CM DEEP TO SKIN

    I did a needle biopsy and got the result: The biopsy has been embedded toto and examined at multiple deeper levels showing cores of a moderately differentiated mucinous adenocarcinoma demonstrating cyto-arcbitectural features consisten with a Nottingham Histologic Score of 7 (Tubule formation=3, Nuclear Pleomorphism=2 Mitotic Index=2)

    The lesion is disposed predominantly as nests and cords of malignant epithelial cells with areas of mucinous differentation evident. There is no evidence lymph- vascular permeation and no micro-calcification are seen.

    Conclusion: Truecut biopsy at 11oclock left breast. - Mucinous adenocarcinoma, moderately differentiated.

    Immunohistochemistry (IHC) for homone receptor status and Her2/Neu over-expression is recomended. Pls advise.

  • obsolete
    obsolete Member Posts: 338
    edited September 2018

    Warm welcome to the Caribbean lady, ( Caribe has long been near & dear to my heart. Thankfully Irma's path missed T&T.) This weekend many of us up here are under emergency hurricane warning, unfortunately.

    Your needle biopsy report indicates Mucinous Carcinoma (same as "adeno...")

    On your other BCO thread from the other day, a diagnostic radiological M.D. already briefed you via PM (private message). Please also read thru this thread on the importance of 2nd opinions. Best wishes to you.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    Hey guys,

    I just got back from my followup and something very interesting...on the prophylactic breast they found atypical lobular hyperplasia, which apparently is a precursor to cancer. Phew!!!! Man or man, if I had kept that left breast, there would have been intense diagnostic imaging/biopsies. I dodged a bullet on that one. Happy

    Otherwise, nothing found on the cancerous side and all the tissue was clean. So hopefully I'm free of cancer and it was caught early and I live happily ever after--- is this possible?

  • Dark13
    Dark13 Member Posts: 50
    edited September 2017

    CT results

    Findings

    chest- dense breast parenchyma is seen. There are 2 closely located lobulated masses in the upper inner aspect of the left breast measuring 1.2 x 2.5cm in diameter. These are separate from the undelying pectoral muscle and do not involve the overlyingskin. Several sub centimeter morphologically - normal right and left auxillary lymph nodes are seen. The right breast is unreamarkable. The nipple areolar complexes are normal. The hilar and mediastinal structures are normal on this non-contrast stydy

    No mediastinal masses or adenopathy

    The lungs and pleural spaces are normal with no lung nodules or pleural effusions.

    Impression:

    1. there are 2 suspicious inner left breast masses which do not involve the overlying skin wall or underlying pectoralis major muscle. These measure 1.2cm and 2.5cm in max.diameter. there are bilateral auxillary lymph nodes in a level 1 and level 11 distribution but these appear morphologically normal on CT.

    2. there is no metastases in the scan plane

    3. The liver lesions appear benign

    4. Incidental notebis made of bulky uterus and focal myometrial mass for which pelvic ultrasound is advised.

    What does #4 mean and could this mass be as a result of me tying my tubes?


  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    Dark13,

    Was this a whole body CT scan? What are the plans for the 2 tumors on the left breast? As for the bulky uterus, that is something that should be followed up. I intend to make an appointment to have a trans-vaginal ultrasound done and at some point a colonoscopy. Being diagnosed with breast cancer has been a rude wake-up call to take a more proactive approach with my health. I was at the hospital for a clinic visit yesterday and there were other women in the waiting room and one of these ladies was wiping away tears every so often. I felt like going over and just comforting her.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    I was looking through the NCCN Breast Cancer Treatment Guidelines 2006 for mucinous or colloid breast cancers because I couldn't find the diagrams in the most recent editions, and hormone therapy is "recommended" for these favorable cancers under 3 centimeters. When I eventually meet with the oncologist, I know that he or she may recommend that I take hormone pills for the next 5-10 years. My concern is that if I experience side effects, which many women report, my chances of breast cancer recurrence go through the roof --- I read on Breastcancer.org that women who stop taking hormones part way through treatment experience 50 -60 % recurrence of breast cancer? This is very scary to me and I'm not really sure why this is so? There are studies of women who underwent lumpectomies with no hormone treatment and they fared well over 20 years and hormone therapy didn't seem to increase survival rates in these women.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    The survival rate for mucinous carcinoma is very good to begin with ~ 90% survival rate over 10 years, so the recurrence risk is 10% and hormone therapy could potentially reduce this recurrence risk by 50% (best case scenario) to 5% meaning 95% survival over 10 years. Given that most women with mucinous carcinoma won't have a recurrence, is it really worth the risk of taking a drug that can potentially cause other life threatening conditions? As you can see, I'm trying to think this through and is something I'll bring up with the oncologist.

  • Arianalr93_
    Arianalr93_ Member Posts: 4
    edited September 2017

    Hi everyone. I am new to this website (my doctor recommended it). I am newly diagnosed with mucinous carcinoma . I am 23 years old . The patholy reports show that it is a mixed carcinoma that is ER+, PR-, and HER2+. Also the KI-67 test came back 30%. I am going through genetic testing and just had an MRI to see if the cancer spread to the other breast. Does anyone have any insight or experience with this type of cancer? My doctor isalready putting together a treatment plan. I will have a double mastectomy, chemo, Anti HER2 therapy, radiation and hormone therapy.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited September 2017

    ariana...i am so sorry to hear that you are joining us. Mucinous cancer is rare and the type that you have, HER2 positive is even more rare. That said...our dear sister, feelingthemagic,also has your type. You can look back on this thread and find her or send her a private message. Her treatment protocol was the same as yours and she did well and continues to do well.


    Keep us posted. We are here for you.Heart

  • bareclaws
    bareclaws Member Posts: 246
    edited September 2017

    Ariana, so sorry you're here, especially at your young age. I'm much older than you, but had a mixed bag of cancer across both breasts, including my invasive triple positive tumor in a bed of mucinous carcinoma. The tumor on the other side was Er and PR negative, and they were never able to learn the Her 2 status of it. Given all the possibilities, they're going to treat the most aggressive, baddest player in the mix, and hope to take care of the lesser evils at the same time. Your recommended treatment is what I'm going through now. It's a long haul and I'm so tired of being in active treatment, but I feel better knowing the doctors are doing everything that they know to do.

  • Dark13
    Dark13 Member Posts: 50
    edited September 2017

    Follow up to my post on Sept 18th I visited my doctor and he recommended removal of the enter left breast. The surgery is schedule for thursday of this week.

    I have not received the results of my Her2 test yet should I wait to get this b4 surgery.

    I really just want to get it over with it seems every time I touch the lump it feels bigger and I know this must be in my mind. I am not sure if I want to tell my friends is this good or bad I really need some advice on this.

    I am also concerned with how I am going to function after the surgery in terms of mobility, what clothes do I wear etc. If any one can shed some light on this b4 Thursday it will be appreciated.



  • Dark13
    Dark13 Member Posts: 50
    edited September 2017

    Yes it was the full body CT. Follow up to my post on Sept 18th I visited my doctor and he recommended removal of the enter left breast. The surgery is schedule for thursday of this week.

    I have not received the results of my Her2 test yet should I wait to get this b4 surgery.

    I really just want to get it over with it seems every time I touch the lump it feels bigger and I know this must be in my mind. I am not sure if I want to tell my friends is this good or bad I really need some advice on this.

    I am also concerned with how I am going to function after the surgery in terms of mobility etc. If any one can shed some light on this b4 Thursday it will be appreciated.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited September 2017

    dark...great questions...


    Regarding telling friends...there are so many answers...but only you will know what works best for you. I am an extremely private person. I am not on facebook. I only told a few people. Most people have no idea that I was treated for breast cancer. In fact, I never told my mother. She was and still is very old, so I didn’t feel like telling her would help either of us. Personally speaking, I don’t think you need to decide now who you want to tell. I only told people as I had the need. That worked for me and I have no regrets.


    Clothes...zippered fronts and ponchos those first weeks were my best friends. I also went up many sizes...

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited September 2017

    Arianair, sorry you have to join us, but glad you found us! You'll find great resources, information and compassionate kindred spirits here. I, too, was diagnosed with mucinous that was HER2 +. You'll see in my signature (below) the treatment protocol I had. Thanks to this forum that led me to the NCCN site, I was able to show my doctors that a second opinion of the pathology and treatment plan was necessary. Unfortunately the second pathology still came back HER2+, but the treatment plan was changed to a less aggressive plan, when the top breast cancer oncologoist in Canada was consulted. I'm doing well, and I hope that gives you some comfort knowing these treatments are doing what they are meant to do. Chemo treatments weren't a ton of fun, but they were more do-able than I'd thought they would be. I didn't do radiation. I highly recommend practising the art of doing kind and fun things for yourself everyday to keep your spirits up. From permission to watch comedy all day, if that's what you feel like doing, to a hike outdoors, to trying a new art medium, to just hanging with friends - whatever makes you happy, do that. I'm here if you want to know more about my experience or you can PM me. Meanwhile, sending you wishes that the treatment protocol goes much better than you expect, and that you have all the support you need to find your way through this in the best way for you.

  • Arianalr93_
    Arianalr93_ Member Posts: 4
    edited September 2017

    Hi everyone thank you for responding and I wish you all the best of luck ❤️. I am meeting with a plastic surgeon tomorrow to discuss reconstruction after surgery. Unfortunately my oncologist did a MRI to see if there are any other masses and in the left side there are 7. All look extremely suspicious of cancer and I plan to get a mastectomy. Unfortunately there was a mass discovered on the right side that needs to be biospied this week. So far it kookaburra like my treatment plan will be surgery . Chemo for 6-8 months, radiation depending on what Is found in surgery, hormones therapy, And anti HER2 therapy for a year. Treatment can change if the other breast is proven cancerous

  • Arianalr93_
    Arianalr93_ Member Posts: 4
    edited September 2017

    Also Hi FeelingTheMagic. ,

    It is great to know I am not alone in a HER2+ mucinous. I am so happy to know that you are doing well with treatment

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited September 2017

    Lately I've been doing research on pubmed (not a good thing for a layperson) and I came across primary neuroendocrine carcinoma of the breast and neuroendocrine tumors. Mucinous breast carcinoma may be seen with neuroendocrine features. Would the neuroendocrine features be listed on the pathology report and how would patients know if they had this very poor prognosis variety?

  • Dark13
    Dark13 Member Posts: 50
    edited September 2017

    Thank you all your responses really helped me to prepare. I had my mastectomy on Thursday 28th and I am at home resting comfortably. I am very surprised that up to now I don't have any major pain and I can move my arm a bit. The hardest thing is sitting still until the drains come out and waiting for the pathalogy results to know what the follow up treatment will be. I am dreading chemo and radiation. So I am hoping for the best. God is in control.

  • bareclaws
    bareclaws Member Posts: 246
    edited October 2017

    Huh. I just got a print out of my records and learned that the bed of mucinous carcinoma surrounding a triple positive IDC tumor turns out to be ER-, PR- and Her2+. Right side is something else entirely. WTF? I guess that explains why they threw everything at me but the kitchen sink.

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited October 2017

    So many of you in the process of active treatment - I'm thinking of all of you! For those doing chemo, I hope you find that it is much more do-able than you expect. I did - even though I reacted allergically - there are many drugs and supports to make the treatments much easier than what they once were. My advice is to keep asking questions, there's usually something that will help any side effects - you just need to make sure you call and let your doctor or onco nurses know what is happening. (Example: my sister-in-law got thrush and suffered through this issue until her next treatment, not realizing there were medications available that could have cleared it up quickly)

    Ariana, I sent you a private message.

    Bosombuddy, I have never heard of an increase in recurrence when women stop taking hormonal therapies before the prescribed length of time. I have taken breaks between different types of therapies, as well as breaks when I was having some uncomfortable side effects, all on doctor's orders. That's not uncommon. I've tended to suggest people at least try the recommended hormone related therapies, but if starting and stopping is a bad thing, I'd best rethink that bit of advice. (will go learn more) My sister-in-law, and others I know, have had virtually no side effects at all from tamoxifen, for those of you concerned. Everyone is unique in how we respond - I wish the best for each of you!

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
    edited October 2017

    Feeling,

    There was a lengthy discussion on this in another thread --- I can't remember the title but anyway, it wasn't exactly increased recurrence but rather increased hazard ratios. The study looked at persistence and compliance with respect to hormonal therapy and it's called The BIG 1-98 Trial and it's here:

    http://www.breastcancer.org/research-news/not-taki...


  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    It was at "Does it really matter what treatment we take".


  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited October 2017

    Good article, Bosumbuddy. Thanks for sharing. I suppose I should tell my doctors about this - since they were the ones who recommended breaks! Good news is I have just one month left of a five year treatment plan! Though, I've heard rumour they might recommend 5 more. Oy. I'll be back in research mode to make that decision if I need to!

  • lala1
    lala1 Member Posts: 974
    edited October 2017

    Feeling the Magic---Ask for the Breast Cancer Index test. I've been told it's 99.9% accurate in telling you whether you would benefit from 5 more years of whatever you're on or if you should swap to something else or if you can stop hormonal therapy all together. Mine is being run as I type and I'll find out in 2 weeks what my next step is. My MO is a big fan of this test as is my dad's best friend who's a top MO in another state.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited October 2017

    i had the BCI test and interestingly, my “numbers” closely aligned with the numbers given at cancermath.net...i came back at low risk of recurrence....so...my doctor said it was my call if I wanted to continue therapy. Furthermore, he said, another thing to consider is that continuing treatment also prevents a future new breast cancer. He also said, if one has few side effects, he will recommend sticking it out, if possible. I like knowing that I can stop at any time....