Mucinous Carcinoma of the breast

1757678808188

Comments

  • rain88
    rain88 Member Posts: 161
    edited March 2020

    Pink, great to hear your surgery went well and genetics came back negative. I imagine what a relief it must have been. (My surgery is still fresh in my mind, but like yours, it went well. I was more worried about the results of my path at the time than anything else. ) I am sorry you had to cancel your cruise, as I know how much you were looking forward to it. Of course, given the current COVID situation, it made sense to cancel it. I wish you speedy recovery and stay safe! Love and hugs )))))

  • rain88
    rain88 Member Posts: 161
    edited March 2020

    Fontana, how are you doing? Was it possible to go ahead with the surgery as scheduled, amid these scary times? I hope you are well and safe.

    I am thinking of all of you, ladies, and I hope you are all well and safe.

    Tricianne, thank you for your prayers, as I am sure you are keeping us all in your gentle heart. Love and hugs )))))

  • ijl
    ijl Member Posts: 16
    edited April 2020

    Hi Rain88,


    Sorry did not notice your reply early.Did you surgeon offer to go back to get more clear margins ?

  • rain88
    rain88 Member Posts: 161
    edited April 2020

    Hi ijl,

    The closest was the anterior margin , at 0.5 mm, and when I asked, the surgeon said that she got all the tissue possible. All physicians on my medical team reassured me that it was fine and there was nothing to worry about. How wide were your margins?

  • ijl
    ijl Member Posts: 16
    edited April 2020

    Hi Rain,

    I just had my lumpectomy on 8th and will find out about my margins next week.

    12 years ago when I had DCIS they could not get clean margins so I decided to go with a mastectomy.

    This time I have IDC possibly mucinous carnicoma based on a core biopsy but will know for sure when I will get a pathology report on the whole tumor. With DCIS it is often hard to get clean margins. With IDC it should be easier so I was just wondering about yours. Was your tumor close to the skin then ? Mine was right below a nipple.

    I am still leaning toward mastectomy but wanted to still keep open mind about breast conservation.

  • rain88
    rain88 Member Posts: 161
    edited April 2020

    Hi ijl,

    First time when I learned I had BC, I was sure I wanted a mastecyomy. I was terrified! My husband too! Then the oncology nurse - an absolutely wonderful person - sat down with me and very calmly and patiently helped me understand that having a mastectomy was not neccessarily a better option. What I got from what she said was that having mastectomy wasn't a guaratee that I wouldn't have a recurrence less than if I had lumpectomy. That and the reading I did after, convinced me that lumpectomy was the right treatment for the size of the tumor I had. 6 months after surgery I still believe it was a good decision.

    I know it must be hard, but I think you made the right decision as well. I hope you will get clear margins and the most favorable results.

    Hugs and love!

  • ijl
    ijl Member Posts: 16
    edited April 2020

    Hi Rain,

    Thank you for your kind words. You made the right decision for 1 cm IDC . I would have done the same if I could 12 years ago.

    Last time the decision was kind of made for me. I had a lumpectomy with high grade DCIS and 2 margins were not clean.

    BS already got a big chunk so my breast was somewhat deformed and I went for a mastectomy. Turned out my whole breast had a lot of DCIS that did not show up on MRI and mammo with a 2mm triple negative microinvasion.

    So it was the right call at the time. I had a perfect DIEP and got flat stomach and 2 perky breasts (they did the lift on the other one). In less then a year I completely forgot that one of the breasts was not 'natural'.

    This time lumpectomy sounds more reasonable if the final pathology does not uncover any surprises. But I know that I am a worry type and will be worried every 6 months at my mammo. So part of me wants to get another mastectomy with TUG reconstruction and be done with it.


  • rain88
    rain88 Member Posts: 161
    edited April 2020

    Oh, I see there is lot more to it, ijl. I recognize yours is a much more complex situation!

  • fontanalucy
    fontanalucy Member Posts: 10
    edited April 2020

    Hello ladies,

    Just wanted to give you a quick update on my case.

    Had a lumpectomy on 3/11, had two sentinel nodes removed.

    I had the lump for at least 7 years prior to seeking a diagnosis (I always thought it was a fibroadenoma).

    My pathology report says clear margins were achieved, the two nodes were free of cancer. I got very lucky, 7 years of having breast cancer without knowing it. It was found that the tumor was pure mucinous and measured almost 5cm.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2020

    fontana..thank you so much for the update. Speaking for all mucinous sisters, we appreciate hearing from each sister. It really helps guide and comfort us.

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    Update of my situation, left breast IDC with mucinous feature, mixed not pure, multifocal, 10mm, 7mm, 2mm when doing reexcision of more margins, all 3 next to each other, grade 3, LVI, MRI did not find node involve but it came out one sentinel node 1.5mm no extension, oncotype 8, ki-67 30-40%, 100% ER+, PR+, Her2-(0), I am debating doing Chemo or not, already consulted 4 oncologists, my oncologist said yes to chemo, other three including my oncologist director said no. I am also puzzled why my surgeon only took one sentinel node out instead of a few more which is easy for me to judge to do chemo or not.

  • ijl
    ijl Member Posts: 16
    edited April 2020

    bbbddd168,

    Why do they want you to have chemo with oncotype being 8?

    It is puzzling that your surgeon did not do auxiliary nodes dissection .

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    My oncologist is a young lady. She said because I am still young ( 52), grade 3, multifocal, one sentinel node positive, LVI, she would like me to do chemo still. She is afraid there is cancer cell has gone to other part of body She thinks I can deal with chemo with no problem.

    I asked my surgeon, her answer is she took out the area which blue dyes has reaction and it is one sentinel node.

  • ijl
    ijl Member Posts: 16
    edited April 2020

    Hi bbbddd168

    Sorry you find yourself in such a tough spot. Is there a way you can get a second opinion with UCSF or Stanford ?

    Maybe you can do it virtually, they do a lot of video conferencing but it could take time.

    In general onctotype is supposed to be reliable in predicting the benefits of the chemo. But you do have a few complications. At the end it might be up to you. Are you a worry type ? maybe then doing chemo will make you feel safer.


  • rain88
    rain88 Member Posts: 161
    edited April 2020

    Fontana, I am glad to hear your surgery is done. It's remarcable that you had it for so long!

    Bbbddd, I find your oncotype score puzzling. From the readings on this forum alone I thought MC, pur, low grade, would get, on average, a RS of 15. I am surprised that your score is an 8, with multifocal, mixed, high grade, LVI and a positive node...



    I am thinking how hard it must be to make a decision. Maybe a second opinion would help. Lots of hugs!

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    yes, I am puzzled about the low oncotype score also. My oncologist is surprised also though nice surprise!

    Got four oncologists opinions and still can not decide Chemo. Several places like Sloan, Stanford, MD anderson all turned off second opinions off because of Covid-19. Guess I will just go ahead and do radiation and pill afterwards. Oncologist said I may need to have 10 years pills.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited April 2020

    bbbddd168, I'll comment only on the sentinel node biopsy question and why only one node was removed.

    What your surgeon said is correct. The nodes are grouped together in an unorderly way and visually a surgeon would not know which nodes to remove. This is why the SNB procedure starts with blue dye and/or isotopes being injected into the breast. The blue dye/isotopes travel through the breast into the nodes. Whichever nodes are "lit up" by the dye/isotopes are the nodes that would most likely be the first to receive cancer cells from the breast, if any cancer cells moved into the nodes. So the surgeon then removes the nodes that lit up with the dye/isotopes. Some people have just one sentinel node, i.e. the dye/isoptopes spread into only one node. Other people have more; most often 2 or 3 but sometimes as many as 5 nodes will be lit up by the dye/isotopes.

    Because the surgeon can't see visually if a node has cancer cells (nor can MRI or ultrasound imaging if the nodal involvement is small), the dye/isotope injection is the only guide the surgeon has as to which nodes and how many nodes to remove. The issue therefore is what happens afterwards. In the past, if a patient was found to have positive sentinel nodes, they would go back for a second surgery for an axillary lymph node dissection (ALND), which involves removal of all level I and II nodes. We all have a different number of nodes so the number of nodes removed during an ALND could be as few as 10 nodes or as many as 40, although usually it's about 15-20. These days, in cases where there is only a small amount of nodal involvement (few nodes or micromets), rather than do an ALND, usually rads to the underarm will be done instead. This is based on research that showed no difference in recurrence and survival rates.

    So the net of is that in your case only one node was removed because you only had one sentinel node, i.e. one node that lit up with the blue dye.

    https://www.mayoclinic.org/tests-procedures/sentinel-node-biopsy/about/pac-20385264

  • ijl
    ijl Member Posts: 16
    edited April 2020

    hi Bessie,


    I am a bit confused by your answer. I just had my lumpectomy. The surgery plan specifically included auxiliary nodes dissection if the sentinel node(s) is positive which is determined during lumpectomy . I thought it was a standard procedure nowadays.

  • rain88
    rain88 Member Posts: 161
    edited April 2020

    My SNB experience was contrary to that of bbbddd, in the sense that instead of 2 or 3 nodes, they ended up removing 10. The reason was that all 10 were colored by the dye, so considered sentinel.

    A friend of mine - we actually had surgery on the same day, same BS - was also told that only a few sentinel nodes would be removed. However, she ended up having an axillary node dissection, which was decided to be performed during the surgery, because the medical team could tell some of the nodes were positive. This way she didn't have to go back a second time for an AND.

    Bbbddd, it's really great your oncotype score is 8 and that you only needed 1 node removed!


  • cindyrf
    cindyrf Member Posts: 1
    edited April 2020

    I was diagnosed with Stage 1A IDC composed of variably-sized clusters of neoplastic cells suspended within pools of mucin and showing moderate tubule formation (score 2), mild nuclear atypia (score 2), and a low mitotic rate (score 1), for a grade of 1. No angiolymphatic invasion is identified and no in-situ component is seen. The size of the single core biopsy is approximately 0.6 cm. The Breast Panel shows it is Estrogen positive (strong >95%) and Progesterone Receptor positive (strong >95%) and HER2 negative.

    I had a lumpectomy with clear surrounding tissue margins and clear sentinel lymph nodes (took a cluster of 3).

    It appears that no matter the size of the tumor, radiation and Aromatase drugs are always recommended as the next step.

    Is this what other people with small tumors have found?


  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2020

    cindy...the very short answer is...According to the NCCN guidelines, which you can go to their website, register, look for breast cancer guidelines and read about mucinous tumors, if you have a mucinous tumor under 3 cm and no node involvement, you will be recommended either tamoxifen or an AI. Depending on if you had a mastectomy or lumpectomy, you will also have radiation. Often, if there is a question about chemo, they will add the Oncotype DX test. And, ifyou are pre menopausal, there might be a discussion about ovarian suppression as well.


    Bottom line, you have great prognostics and should do well.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited April 2020

    ijl, sometimes the sentinel node(s) will be sent for a quick check while the patient is in surgery, and if any cancer is found in the sentinel node(s), then the surgeon will do an axillary dissection right away.

    These days this is done mostly in situations where there is a high risk that there might be extensive nodal involvement because in those cases an axillary dissection would be the preferred next step rather than radiation only. So if the ALND is necessary and can be done during this first surgery, that's a good thing. The problem with this quick check process is that the Pathologist is likely to only find nodal involvement if there is a lot of it - if it's micromets or just slightly larger than that, there's a good chance that the Pathologist won't find the cancer cells until he/she takes a much more thorough look at the breast tissue and nodes later on. In the past it used to be quite common that surgeons sent the sentinel nodes for a check while the surgery was still underway, but it wasn't unusual that the quick check would find nothing (and people would come out of surgery thinking that they were node negative) but then the more comprehensive analysis of the tissue/nodes later would find small amounts of nodal involvement, changing the diagnosis. Therefore because of the high false negative rate, and because ALNDs aren't done as often these days when there is limited nodal involvement, this quick sentinel node check during surgery isn't done very often anymore.

    Rain88, 10 sentinel nodes? I think that's the record for what I've heard on this site. I know of some people who've had 7 or 8 but I don't think I've heard of 10 before. I had 3, which seems to be about average. The situation of your friend sounds like what I just described - with more extensive nodal involvement (particularly if it might have actually been visible to the naked eye), then an ALND would be recommended so the surgeon might as well get it all done at once.


  • ijl
    ijl Member Posts: 16
    edited April 2020

    Hi Beesie,


    Thank for the explanation. my type of lazy cancer was supposed to have negative SNB. I will ask my surgeon about it, I guess at Stanford and UCSF they have certain protocols and I assumed they were very industry standards.

    I have my appointment today and now started to worry that they may convert my node status from negative to positive. :)

  • rain88
    rain88 Member Posts: 161
    edited April 2020

    To be honest, Beesie, I was a bit dismayed when I heard about the high number of nodes removed. They insisted they had to take them all because the malignant cells could've traveled to any one of them had they spread. Who knows, maybe I have 10 times more lymph nodes than anybody! 😀 Well, 10 less now. 😕

    ijl, good luck with your appointment.

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    Frankly, I wish I researched more before surgery and asked my surgeon to take a few more nodes nearby out to check also if she found my sentinel node has reaction to dyes. If she would not do it, I may find another surgeon. It is too late now. I can only assume that I have just one node positive.

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    I only find from this thread that MC has more cases of multifocal. I am glad I find this forum. Thanks all the sisters here. But Mucinous looks like slow growing and low grade, I have grade 3 though. Cry. Also it seems all the stage and judges use the largest cancer size, they do not count how many multifocal you have. All the researches said also they do not know the impact of multifocal

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    I just checked MSKCC clinical trial and they returned that they do not have any open clinical trial for me

  • ijl
    ijl Member Posts: 16
    edited April 2020

    So I came back from my lumpectomy post-op appointment. Unfortunately the surgeon did not get all clean margins . They found DCIS and its margin was less than 1mm. SO the surgeon wants to do re-excision , he is confident he can get clear margins.

    Also on the final pathology my tumor was 75% mucinious and 25% IDC. Additionally my grade went from 1 to 2 as my nuclear pleomorhism went to 2 from 1.

    I guess it makes my decision easier : mastectomy with TUG. I just need to find out when I can have it done. Meanwhile I might do re-excision to get it all out. I would like to think by June the things will calm down in California and I can have it then.

    I haven't talked to the surgeon yet only to PA . He will call me later today.


  • rain88
    rain88 Member Posts: 161
    edited April 2020

    This is one of the articles I came across trying to get clarification about margins "Margins in Breast Cancer: How Much is Enough?", in case someone else would be interested.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58948..

    As well, recommendations can be found on page 4 of "Consesus Guideline on Breast Cancer Lumpectomy Margins", The American Society of Breast Surgeons.

  • bbbddd168
    bbbddd168 Member Posts: 14
    edited April 2020

    I have the same issue. Mammogram and MRI all found two spots next to each other. . Ultrasound found only one spot. After first lumpectomy, original 7mm became 10mm from grade 2 to 3. Another from 9mm to at least 7mm+. Margin positive anterior, Medial negative 1mm, Lateral negative2mm. Surgeon agreed to do reexcision only margin positive anterior, I begged her 4 times to have other two more margins. She agreed finally but said my request is ridiculous. After re-excision, pathology came back Anterior and Medial extra cut had nothing, but lateral found another 2mm IDC within 4mm margin.