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Mucinous Carcinoma of the breast

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Comments

  • obsolete
    obsolete Member Posts: 351
    edited March 2017

    Ladies, I'd like to ask those of you, who had a palpable mucinous mass, what it felt like to touch? (My mucinous lesions weren't palpable because they were hidden under a solid papillary mass). Did it feel like jello or soft rubber maybe? Was it whiter or transparent thru the skin due to the white mucin? Just wondering what to look for with dense and lumpy breasts.

    For you ladies with arthritic pain, maybe eliminating all fluoride from your water and diet might help? It helped me eliminate daily arthritis pain in my lower back after 3 years of chronic pain. There is fluoride added to most toothpaste, bottled water, many municipal water supplies, milk, bottled juices, etc. Be careful if you shower or soak in fluoridated water. Google fluoride dangers. Fluoride is a neuro-toxin and it lowers IQ. I don't know if this will stop your anti-hormonal SE pain or not? Good luck.

  • obsolete
    obsolete Member Posts: 351
    edited March 2017

    VR, thanks for that update and for your valuable contributions on this website. All you ladies are so very much appreciated!

    Hmmm, so that's maybe why my new doctor's office at a NCI facility told me to personally take possession of my pathology slides and keep them safe. They told me my mucinous slides are literally like gold. The doctor insisted that I not visit their office without my slides in hand. They are like eye candy.

    One pathologist marked up all my slides with items of interest (using a black marker) and encouraged me to view my own slides under a microscope, which I did several times. Visualization was the best tool for me to gain a better understanding. I've compared my pathology slides to that published in medical studies. My other doctors at a teaching hospital never even had the time (or never made the time) to view patient slides themselves.



  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2015

    Yes, We! The Sloan Kettering researchers are very proud of their specimens and treat them like....they are their golden children!!!! 😇

  • Kitiara
    Kitiara Member Posts: 2
    edited July 2015

    Hello from Estonia!

    I just received my histology report yesterday and am trying to understand it. Hopefully you can help me and maybe share what treatment options were recommended to you. Firstly about me, I am 41, turning 42 soon and am a single mother for my 10 year old son. I have been reading this forum since I had my operation on 16.06 (breast conserving surgery plus sentinel node biopsy) and have found it very educating, so big thanks to everybody for posting and sharing.

    My results are summarised as G2 pT1c, they also add that it is infiltrative (I do not how to translate this into English) mucinous carcinoma. So I gather that it is grade 2, stage 1 (as they checked altogether 11 nodes and all were clear). Furthermore the report states that margins are clear, then comes the part regarding markers which I find hard to understand as no commas are used, but I understand that it is 100% hormone receptive.

    Markers: ER:PS5 (100%) + IS2 (moderate) = 7 positive PR: PS5 (100%)+IS3 (strong) 0 8 positive Ki-67 5% HER-2 0 negative E-Cadh +.

    The treatment prescribed is chemo 6-FEC, then rads+ Novaldex.

    My main question is whether this common to prescribe chemo related to these diagnoses, what do you think? Although the first chemo is prescribed already for 15.07, I have also applied for second opinion to be sure. And before someone suggests it, we do not use Mammaprint or OncoType (or what was the exact name) tests in Estonia yet.

    All thoughts are welcome! Be strong and enjoy the summer!

    Kerstin

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2015

    kerstin..I would strongly recommend a second opinion and/or your case be presented to a tumor board. Also register at the NCCN'S website and read the professional version (red logo) of the breast cancer treatment guidelines AND carefully read the endocrine therapy discussion pages beginning somewhere around page 100.


    A tumor board consists of several oncology specialists who discuss tricky cases....usually once per week. That said, you have excellent prognostics and should do well! Good luck!

  • marathongirl
    marathongirl Member Posts: 16
    edited July 2015

    Hi Weareconnected,

    Thank you for your kind thoughts. I know none of us wanted to be here on these boards! To answer your question , I'm not sure exactly what a growth rate mititic score is but I do know that in 2008 my DCIS was grade 2 with comedo necrosis which I know is a sign that it is growing a little faster. I had my MRI yesterday and will meet with the oncologist and surgeon on Tuesday to find out my treatment plan. I'm wondering if given my history a Mx might be recommended. I understand wanting to get rid of 'em if they're causing problems! Of course then, there has also been something in the news this week about mammography and over diagnosis because some of these cancers we're talking don't usually become life threatening.

    I'll post again after I see the docs.

    Voracious reader, thanks for all of the information and links you post and for still hanging out with us five years out! I would definitely participate in the Sloan Kettering study if they needed more subjects.


  • Kitiara
    Kitiara Member Posts: 2
    edited July 2015

    Thank you voracious reader, I will do that. BTW it was a decision by a tumor board, but it is vacations time and I am not totally certain how many specialist were present. My doctor is on vacation and her replacement could not explain the reasons for chemo and just kept referring to my relatively young age. In Estonia (it is a really small country) we have 2 main treatment centres, so I will be getting my second opinion from the other one, which is working closely with our medical university. My doctor is on vacation and her replacement could not explain the reasons for chemo and just kept referring to my relatively young age.

    Dear WeAreConnected - the lump felt just a lump and when i touched it I could feel the breast texture - it did not feel rubbery or anything - just quite hard and fixed in one place. And no difference regarding the colour, as in my case it was situated a bit deeper in the breast (about 1 cm from skin). Regarding colour, I only saw what they draw out at the fine needle biopsy - it was white substance, not too fluidly - a bit like a glue. Hope this helps.

    BR Kerstin

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2015

    kit....when you get the next opinion, could you ask them to run the treatment plan recommendation before their tumor board? Furthermore, if chemo is recommended, ask if you can do it before surgery or following it.

  • marathongirl
    marathongirl Member Posts: 16
    edited July 2015

    Well, my MRI was yesterday and I got them to upload a copy of the report to my Emory Patient Portal. If I am interpreting it correctly it appears to be consistent with the original biopsy report and mentions no other masses, suspicious areas, etc. And that feels like good news to me!! However there were a few phrases that confused me. One was "mild background enhancement" perhaps talking about axillae area but then it goes on to say 'No axillary adenopathy is identified." yet recommends a left axiallary ultrasound. I assume this is because this time it is classified as invasive. Another term I'd like to be clarified is "There are multiple bilateral non-specific foci of enhancement." I don't think any of you are radiologist (though I do wonder sometimes about Voracious Reader!) but thought some of you might have become lay experts at interpreting screening and pathology reports!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2015

    marathon...I wouldn't dare try to understand a radiology or pathology report! I have stated before, following a visit to Sloan Kettering, that there is little uniformity in the way reports are written. That said, once one has an invasive diagnosis, images and specimens are looked at extremely carefully. From my own personal experience with respect to a close cousin's breast cancer diagnosis, my poor cousin keeps having "suspicious" images and call backs for numerous biopsies that thankfully have been benign.


    Cancer world can be very frustrating! I know downloading our reports is gaining traction because medicine wants patients to take a greater role in their own care AND both physicians and patients want more transparency. But, in a situation like yours, where you have the report but little understanding about what it means, concerns me, a lot. When given a report, it demands an explanation from a qualified person. I hope you have a call into your team and get a satisfactory explanation. Please keep us posted!



  • marathongirl
    marathongirl Member Posts: 16
    edited July 2015

    Thanks Voracious Reader, My doc appointments are on Tuesday. I'll post again with what my treatment plans end up being

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2015

    marathon..one more thing that frustrates me...there is upwards of 20% of disagreement in pathology reports among pathologists. Likewise, when it comes to imaging, there a failure rate of upwards of 20% as well...that is, 20% of imaging is either a false negative or false positive! Taking those figures into consideration, I often wonder of the importance of patients receiving their medical information before a qualified professional interpretes it in context. I'm not saying that we shouldn't have, as the medical establishment calls it "patient engagement.". I think patient engagement is extremely important. However, I think it is necessary for patients to have a foundation in understanding their medical information when they are made aware of those findings.


    Good luck on Tuesday!!!!

  • MaddieT
    MaddieT Member Posts: 23
    edited July 2015

    I too had dense breasts and checked regularly for anything out of the ordinary. Then came the day when I felt a lump. It wasn't pea shaped as I imagined all cancer was, but rather oval, and quite large. It was hard and began to hurt. Best wishes.

  • marathongirl
    marathongirl Member Posts: 16
    edited July 2015

    Hi everyone,

    I saw the oncologist and surgeon today. They confirmed that nothing else showed up on the MRI and all indicators point to this being a Grade 1 invasive mutinous carcinoma. Since this is the second malignancy in my left breast (first being DCIS in 2008), it's time to say bye-bye to this problem child breast. I'll be having a mastectomy likely with immediate reconstruction. I'm at peace with this plan though I'm sure I'll be a little nervous as the Mx gets a little closer. I meet with the plastic surgeon on July 29th and then she and the other surgeon will have to coordinate. I just hope my recovery time is quick! I'd like to run another marathon or two in the fall, and resume my twice weekly strength training workouts as soon as possible afterwards. Thanks for all the support I've found on these message boards! I will keep everyone posted as I go forward with this journey.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2015

    glad to hear that there were no surprises and you have a treatment plan in place. No doubt in my mind that you will do well! Marathon...may your journey lead you on the road to enjoying many races ahead!💓💓👍👍

  • oldermom409
    oldermom409 Member Posts: 7
    edited July 2015

    I am 60 yrs old. Have Mucinous carcinoma in left breast, found papilloma tumor in right breast via MRI with contrast. Years of fibroids, cysts, biopsies. Got bi-lat mx almost 2 weeks ago. Have type 2 diabetes, no reconstruction. Thought that would help healing, also why put artificial implant in when trying to clean cancer out? Surprised myself with a strong negative response to scarred body. Thought I could ignore it. Single mom with 2 boys still at home. Go in few days to get pathology report. Need support.

  • gypsyjo
    gypsyjo Member Posts: 112
    edited July 2015

    Hi Oldermom, I read your post thinking "you aren't that old!" I guess I have a few years on you. You came to a good place for support. We have all been there and are here for support too. Welcome to our group! Feel free to post feelings & questions. Sharing does help. Do whatever you need to feel good about your body. Everyone is different and its all valid.

    Gypsyjo


  • obsolete
    obsolete Member Posts: 351
    edited March 2017

    Mom409, I'm very sorry you find yourself here with us. You are not alone. This is an excellent supportive group of wonderful well-informed ladies. I just wanted to send you a big hug and say I'm here for you. I'll send you a private message if you feel like chatting. I've also had mucinous with benign lesions, cysts and papillary carcinoma. Some papillary carcinoma, such as the solid papillary type, tend to produce mucin.

    Marathon, Maddie & Kitiara, thank you for your update and descriptions of your mucinous lumps. I wish you all the best and appreciate your updates. I'm still dealing with abnormal issues in my breasts that are not visible in any imaging. Doctors always seem to say "scar tissue" when they're not sure what it is.

    I had found it very worthwhile getting 2nd opinions on pathology readings for mucinous & papillary (I had total 4 pathologies read) because pathologist's training and subjectivity vary considerably, especially on rarer subtypes.

    Best wishes, ladies!

  • oldermom409
    oldermom409 Member Posts: 7
    edited July 2015

    Question: Had bmx 11 days ago. Took binder off 2 days ago when last drain came out. Have "bruising" around long scars. Is bruising normal? Should I put binder back on? Should I still be putting ice? What can I do about very sore armpits? What to wear instead of deodorant? Not fully healed- afraid to use anything, but it's hot! Thanks. And thank you for the welcome.

  • oldermom409
    oldermom409 Member Posts: 7
    edited July 2015

    Thank you!

  • obsolete
    obsolete Member Posts: 351
    edited March 2017

    Mom409, sorry you are having these difficulties, but your nurse navigator or doctor could probably best address your individual situation. If you do a search on this website under "surgery sisters" you can find a few threads, some current and some outdated, about various details on surgical issues.

    Even in hot weather, I didn't put anything under my arm for several months following each of my past surgeries. Tom's of Maine produces deodorants that contain less harsh chemicals and toxic aluminum. Or check your local pharmacy for gentler deodorants labeled with the pink BC ribbon. I sent you a PM. Hang in there as best you can. Healing hugs!


  • oldermom409
    oldermom409 Member Posts: 7
    edited July 2015

    Another question: Are all oncologists "equal", or are there special breast cancer oncologists? And how can i dissolve the glue under my arms? I shower and gingerly wash with soap, but still feel sticky. Can't wait until I get the final pathology report this Thursday. I'm only on Motrin now, but I'm very sore. And I stopped wearing the binder but was sore and swelling, so I had to start wearing it again. Still waking up after about 3-4 hours of sleeping in tilted bed. Will try to sleep on lazy-boy tonight. Nurse told me when I pass 3 weeks post surgery I will feel a big difference. Any thoughts?

  • Golden01
    Golden01 Member Posts: 527
    edited July 2015

    I see an oncologist that only sees BC patients. He was in private practice but has moved and heads up the Breast Cancer Clinic for a new joint hospital and University program (NCI Research Center). It took a good 3-4 weeks before I saw a big difference. I think your nurse is right. I can't remember about the glue . . . I think the stickiness just eventually disappeared.

  • obsolete
    obsolete Member Posts: 351
    edited March 2017

    Mom409, I'm sorry to hear that you're having some terribly uncomfortable experiences following surgery. Regarding an oncologist, Golden's advice to see an oncologist who specializes in breastcare is important. My 1st oncologist did not have a good grasp of knowledge on the rarer cancers, so I eventually changed to another med onc who had far more knowledge and kept abreast of the more recent studies on my cancer subtypes. You're going to want to reach a strong comfort level with your medical team, and it's often useful to seek other consults to get 2nd opinions. After I had discovered that my first medical team's knowledge was basically limited to medical studies & treatments concerning only conventional cancers (like IDC-NST, DCIS, ILC, etc.) and not about rarer non-conventional BC types (mucinous and papillary), I knew I had to make a change in doctors. It was shocking at actually how little some BC MD's knew about our rarer cancer subtypes. Never stop advocating for yourself. Best wishes.

  • Golden01
    Golden01 Member Posts: 527
    edited July 2015

    My breast surgeon presented my case to the hospital's Tumor Board after my lumpectomy that had bad margins. I hadn't yet seen the MO but he was part of the Tumor Board that had considered my case.

  • oldermom409
    oldermom409 Member Posts: 7
    edited July 2015

    Thanks Golden01 and WeAreConnected. I will ask surgeon tomorrow about special breast cancer oncologist. Anyone know of one near Overlook Hospital in NJ?

  • oldermom409
    oldermom409 Member Posts: 7
    edited July 2015

    Went to BC surgeon today. Pathology after BMX showed stage 1 cancer with clean lymph nodes. Thank God. Tests for HER2 and hormone receptors being done again. Meet with oncologist August 6. Still wearing binder. Initially only concern was BC left breast. Then found papiloma tumor in right breast. During mastectomy they found another problem after removal of tumor underneath it. So supposedly good breast had more extensive surgery than bc side. Glad I had both breasts removed. It was right for my situation. Now the next step.

  • Unbreakable01
    Unbreakable01 Member Posts: 54
    edited July 2015


    I was recently diagnosed with mucinous carcinoma on May 27.  I'm 34, clinical stage 2, high proliferation rate, and some of the other things I should probably know but didn't get the copy of my pathology report.  I'm ER+ so will have the fun of tamoxifen.

    The hardest part for me so far hasn't been the cancer, but trying to get appointments and people knowing what they're supposed to be doing.  I finally was able to get my Pre-Op work done and go in for surgery on Wednesday.  I'll be having a single mastectomy with breast reconstruction.

     

    It's "nice" to find other people that have this since there's not too much that is out there.  You all are in my prayers. 

  • gypsyjo
    gypsyjo Member Posts: 112
    edited July 2015

    Unbreakable, Sorry that you have to join us. There is strength, support and knowledge in our coming together though. I thoroughly understand the frustration of getting information and appointments. Wishing you the best on Wednesday and keep us posted as to how you are doing.

    Gypsy Jo

  • moderators
    moderators Posts: 8,744
    edited July 2015

    Unbreakable-

    We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we're glad you've found us, and hope you find the support and encouragement you need during your time with us.

    Good luck with your surgery! We hope all goes well, and your recovery is swift and easy. Keep us posted on how you're doing, you're in our thoughts!

    The Mods

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