Mucinous Carcinoma of the breast

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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    Katie...Sorry to hear about your diagnosis.  When I was first diagnosed, I came here and read what the sisters had written about Mucinous BC, over and over again.  I hope this thread helps guide you. I wish you well with your appointment with Dr. Reedijk.  Perhaps, after you meet with him, you can enlighten us even more.

    You ask a very important question regarding radiation.  Since mucnious breast cancer is rare, it would be difficult to tease out the numbers and make them statistically significant.  All I can say is that if you are under 70 and choose lumpectomy, the standard of care includes radiation.  That doesn't mean that all women choose to have the radiation.  Instead, it is the standard of care and you and your doctor would need to have a healthy discussion about radiation if you are offered a lumpectomy.  For the record, I was offered mammosite and deferred.  I chose conventional whole breast radiation and lumpectomy.

    While you are waiting you also might like to google search the NCCN 2011 breast cancer treatment guidelines.  Once you have your final pathology report, you can compare your report with the NCCN guidelines and begin your discussion about your treatment plans with your doctors.

    Good luck and keep us posted. 

  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2011

    Lots of prayers today for mikii's mum having her mastectomy and for you Katie as you deal with your new diagnosis. Love, blessings and encouragement from Tricianne

  • miki123
    miki123 Member Posts: 16
    edited June 2011

    hi every one!!!!!! just came from the hospital for few hours...thanks God my mom is good!!!!!!

    she had the surgery!!!!!and she feels good!!!!! her lymphs were wound N E G A T I V E!!!!!!!!!!!!

    when they open her brest they found out another one hiding there...Frown 

    now we are waiting for her patalogic resolt but the doctors say that mostly if the biopsy in sergury was negative it will negative on patalogy too!!!!!!!!!!!

    maybe tomorrow she will come home...

    i feel so releaved....i can't explane you how hard it was to me....

    what do you thin will be next? after mastectomy will she get another tritment? like radiation? or chimo?

    thank you for all your praeyrs!!!!!!!!!!!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    I am so happy to hear that your mom's surgery went well.  What a relief for you and your family.  Since she had a mastectomy, she will probably not need radiation.  Once the pathologist looks carefully at her tumors, the medical oncologist will help her decide if she needs chemotherapy.  Remember, chemotherapy is very doable if she needs it.  Good luck and keep us posted.  Shabbot Shalom! 

  • IrishDreamer
    IrishDreamer Member Posts: 2
    edited June 2011

    Hi there,

    I was just diagnosed and begin chemo on Monday.  My oncologist is recommending Avastin, as well.  I had the Avastin infusion last week -- this Monday, we add the chemo to it.

    Does anyone have any info. on using the Avastin?  I had a nosebleed this past week from it.  I'm very nervous.

    thanks so much,

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    Irishdreamer.... Sorry to hear about your diagnosis. Do you have stage IV mucinous breast cancer? My understanding is that it is given in that situation. Right now the FDA is still studying avistan for breast cancer. And "Yes," a side effect is nose bleeds. Thoughts and prayers to you.

  • IrishDreamer
    IrishDreamer Member Posts: 2
    edited June 2011

    Thanks for the prompt reply, voraciousreader!!!  My primary care physician on the initial call said it was either at the 2A, 2B, or III stage and highly curable. I'm wondering if he just read it off a website.  There is lymphnode involvement.  I asked each time I had a mammogram to have the lump removed.  I was told over and over it was nothing.....ignore it.  Now, I'm scheduled for 4 sessions of Doxorubicin 60, Cyclophosphami 600mg,, and Avastin 10 mg.--  then 4 additional sessions of Paclitaxel 175, and Avastin 10 mg for 3 out of the 4 sessions.  Then wait 4-8 weeks for surgergy because of the bleeding issues with Avastin. Then on to radiation, I guess.  Not there yet. My oncologist said all my scans and tests came back fine.  I was hoping to find someone who is receiving Avastin to help me.  Chemo is frightening enough, but I'm petrified with the Avastin.

    Thanks for listening. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    Irishdreamer... I hope someone else who was diagnosed with mucinous BC who has had chemo will chime in. Has your doctor presented your case to a tumor board? The usual standard of care according to the 2011 NCCN Breast Cancer treatment guidelines include chemo for tumors over 3cm and/ or lymph node involvement. Herceptin is included in the rare HER/nu + mucinous breast cancer. I would ask for a second opinion as well. Good luck.

  • sweetangel
    sweetangel Member Posts: 38
    edited June 2011
    I have been diagnosed last feb of this year with stage 4 breast cancer.  IDC with prominent MUCINOUS differentation.  Mucinous component comprises of 80% of my tumor, which is only GRADE 1.  There are a number of aspects of my case which are atypical.  Mucinous cancers are usually more indolent.  It is unusual for me to have any signs of locally advance disease, such as axially lynphadenopathy.  I have a widespread bone metastases and innumerable hepatic metastases in liver, both left and right are affected with larger lesions. Through chemo some of the smaller lesions (tumor) are no longer visualized, and all the larger ones have decreased. The chemo seems to work on my liver but not in my bones, recent bones scan shows tumor flare, it spread almost every part of my bones, multiple lesions identified throughout my entire spine, skull, arms, hips. Inspite of this condition, I am still pain free and not taking pain meds.  I am on my 5th chemo treatment today and almost done next month.  Onco said next treatment will be based on another set of Liver and Bone scan result.  I am tolerating chemo very well and have been active still, taking care of my 1 year old daughter.  My Onco and I agreed to start on a lesser aggressive treatment with is FEC 50, which is unusall for stage 4, where patient are treated aggressively.  I believe my ONCO's plan, we are thinking if I started aggresively then later on I will be run out of Chemo regimen to try.  I hope we did the right decision and that there is HOPE for me.  I wanted to live longer for my daugther and have been strong for her through this difficult time of my life. 
  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2011

    Sweetangel, great to hear from you but sorry that you are dealing with the "hard stuff" I certainly promise to pray for you ( and a good result from your treatment) each time that I log in regularly to this thread. Many blessings for now and hope for the future. Tricanne

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    Sweetangel...Sorry to hear about your diagnosis and the difficulties you are having with your treatment.  I'm curious to know how many pathologists reviewed your tumor.  Pathologists don't often see mucinous tumors.  Did you have the Oncotype DX test?  Perhaps there is a component of your tumor that the pathologist didn't discover that needs further examination that would ultimately help guide you and your MO.

    Regarding hope...   Many Stage IV bc survivors find a protocol that keeps them stable or NED for many, many, MANY years!  So do NOT forget...where there is life, there is HOPE!

    Thoughts and prayers to you...

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    Sweetangel...I'm going to go out on a limb and suggest that your doctor contact Britta Weigelt who is a researcher in England.  She and her colleagues study rare breast cancers, including mucinous tumors.  Perhaps she and her colleagues can be of some help.

  • hymil
    hymil Member Posts: 177
    edited June 2011

    Just to add I don't know if the 3cm guidelione will work with mucinous tumours, as the mucin makes them seem bigger than they really are - larger lump but less cancer if you see what i mean. So 6cm of pure mucinous tumour may be less bad than 2cm of normal IDC, which makes it hard to use standard criteria fop staging and treatment decisions..

    Hi to the new sisters on this thread. Smile You're part of an elite club here you know!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011

    Hymil...According to the NCCN guidelines, the critical cut off for measuring ER+/PR+, HER/neu - pure mucinous tumors is 3 cm and, like you suggested, the mucin makes them larger, whereas for the traditional ER+/PR+, HER/neu -  tumors, the cut off is lower.

  • miki123
    miki123 Member Posts: 16
    edited July 2011

    hi to all my sisters!!!!!

    How are you all? well my mom feel preaty good(555)...this Wednesday she will take stitches out....and we will need to go to ancologist to see what next....i have here the potologist answer:

    Four lymph nodes free of tumor

    derial sections CK8/18 pANKERATIN IMMUNOHISTOCHEMISTRY PERFORMED.

    Colloid mucinous carcinoma grade 2 6.5 cm in greatest dimension.

    nipple skin and surical margins free of tumor

    ER:90% of the cells are moderately to strongly positive +2 to +3.

    PR: NEGATIVE

    If some one here knows what does it means i'll appreciate it very much!!!!Embarassed

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    Miki....So glad to hear that your mom is doing well following surgery!!Laughing

    From your description the good news is that despite a fairly large tumor...she has NO node involvement!  That's one of the AMAZING aspects of traditional pure mucinous breast cancers...they can grow unusually large and yet, not spread to the lymph nodes.

    You don't mention anything about the HER/neu status.  Most mucinous breast cancers are HER/neu -.  You need to find that information in the final pathology report.

    Regarding further treatment, according to the NCCN 2011 breast cancer treatment guidelines, USUALLY if a mucinous tumor is greater than 3 cm and/or has lymph node involvement, chemo is offered. She will also be offered hormone therapy since the tumor is ER+ and that's also a good prognostic!

    Thoughts and prayers to you, your mom and your entire family!

  • Sherbear
    Sherbear Member Posts: 68
    edited July 2011

    So happy to hear that your Mom is faring well after surgery Miki!  

  • miki123
    miki123 Member Posts: 16
    edited July 2011

    hi voraciousre  and Shrebear

    thank you for your good words....Embarassed

    i can't find no mention about the HER/neu status....just the ER and the PR....

    Shreber what was yours tretment? and again like i told you once Voraciosre no mention about Onco type test....I TRY TO FIND SOME REALY good specialist oncolog.....and to get 2 opinionce about the next step...don't want to missed nothing this time!!!!!

    Hymil-i'm sorry about your diagnos...please try to believe that you will fight and ween the cancer....my heard is with you.....bless you God....

  • Sherbear
    Sherbear Member Posts: 68
    edited July 2011

    Hi MIki, due to my age (36 at the time of Dx), they wanted to throw the book at me, so to speak, so I had a modified radical mastectomy, followed by 4 treatments of TC chemo every 3 weeks, and 30 radiation treatments.  Oncotype was 17.  Am now on Tamoxifen for a few years before trying to have kids with embryo's that we froze before chemo. During all of this I have also had a naturopath to help me along with diet and supplementation.  I think I am considered 'mixed mucinous', although I ALWAYS forget to ask and they just treated my tumour (which was 3.3 cm inside a non-cancerous tumour) as IDC anyway.  

    I guess I could have just told you to look at my 'tagline' at the bottom of my post, lol.   

  • tricianneAust
    tricianneAust Member Posts: 153
    edited July 2011

    Hi girls just checking in to keep my daily prayers for you up to date, not that God doesn't know but I like to pray intelligently for you. Miki, that's quite good news about your mum, especially the no node involvement. Just ask your mum's HER results mine were a week later than the other results because the pathology tests apparently get double checked by the big boss and they got put aside on her desk, and yes as anticipated for MC they were negative.So plenty of prayers for you Sherbear and Hymil as well as for Voraciousreader, I do so appreciate your capable answers you are such a source of info I should get my health insurance to send you a pay cheque.

    Sherbear I like your lol about the tagline, it took me quite a while to understand all the abbreviations. I have to edit mine every time as the profile would not accept my update.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    Tricianne... Thank you for all your prayers for all of us. It makes me feel so good to know that others pray for my well being. I do pray for all the sisters before us, those who have left us and those who will one day face it. May we all find peace and strength to carry on....

  • Sherbear
    Sherbear Member Posts: 68
    edited July 2011

    Thanks Tricianne, for all of your thoughts and prayers, same to you and everyone else here :)

    I know, it's so funny, took me a while to 'condense' my profile, I like to ramble....lol 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    Bump for faithopepeace

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    bump  2basco

  • Linda-Renee
    Linda-Renee Member Posts: 16
    edited July 2011

    I have been reading back on this thread and the information is so incredibly useful. Thank you to all who contribute. I thought I was done after the radiation was over but my radiaition onc asked me to go back to my surgeon to check a lump behind the core biopsy scar. I did and he did an ultrasound and then scheduled an outpatient procedure to remove it. It seems to me that radiation should have taken care of any stray cancer cells, so based on what I have read, it seems likely that it is a fat deposit or small cyst. Fingers crossed. I get the stitches removed on Friday and hopefully the patholgy report will be back by then... This has taught me one very important lesson. This is never truly over. I was smug in feeling that I could turn my back on it! The good news is that I finally bit the bullet and decided to retire!!! Official date is August 17. I still cannot beleive that I have actually done it! Hugs to everyone who has the (good) fortune to find this thread.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    Linda-Renee..We'll keep our fingers crossed for you that all will be well.  Good luck with retirement....join us on the Book Lovers thread!!!!!!!!!!!!!!!!!!!!Kiss

  • Sandysoo
    Sandysoo Member Posts: 13
    edited July 2011

    Hi Guys

    Sorry for delay in answering. I had my first blast of chemo 2 weeks ago, and I have been waiting for side effects to happen. Thankfully nothing so far, just the metal taste in my mouth.

    My pathology report was HER2 positive, so I am having Herceptin with the chemo.

    Anyone else on this?

    Once again can I thank you all for your support when I first found this site.

  • Linda-Renee
    Linda-Renee Member Posts: 16
    edited July 2011

    Thanks VR - what a great thread! I just ordered a bunch of books for my kindle. I have just begun reading a book called To the End of the Land by David Grossman. Looks promising except for the punctuation, which is driving me nuts!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    Sandysoo..Glad to hear that your treatment is going well.  So, your tumor was HER/neu positive.  I guess you can say you are one in a million!  If my memory is correct, less than 3% of mucinous breast cancers are HER/neu positive.  The Herceptin is your new best friend!  You didn't mention your ER/PR status.  Again, there have been a few sisters with mucinous breasts cancers who were ER/PR negative...but again, that is also VERY rare.

    Thoughts and prayers to you!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2011

    Linda-Renee...I'm glad you found the book lovers thread!  It definitely will keep you busy.  The sisters on THAT thread are all very serious readers!  Funny how you mention the Grossman book.  My neighbor and best friend is Israeli and was raving about that book while she was reading in Hebrew.  When she finally told me the name of the book in English, I had told her it was on my list of books to read. 

    I also see that you are from Montreal.  My maternal family is from Montreal.  Very long story.  I speak to Canada EVERY day.  The short version is that there were two ships that left Russia with my grandmother and her siblings.  My grandmother and two of her sisters arrived on Ellis Island,  while the other ship docked in Montreal with the rest of her siblings.  My grandparents and their daughters, including my mother, would often visit Montreal.  Ultimately, my two aunts married Canadians and moved to Montreal.  So all of my maternal cousins are Canadian.  We are VERY close....