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Mucinous Carcinoma of the breast

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  • northernstar
    northernstar Member Posts: 3
    edited May 2011
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    Hi everyone

    I first posted a couple of months ago and thought I'd better file an update in case anyone reading through this thread in the future might find it useful.

    When I posted I had just started taking Tamoxifen and was having a really bad time with it (the main problem being the insomnia). I ended up ranting at my GP (as she backed nervously towards the door), who agreed to write to my oncologist (this is how it works in the UK - very polite!) detailing my concerns. I did the CancerMath thing (thank you VR - that was your suggestion) and found that taking Tamoxifen reduced my 15yr mortality rate from 3% to 2%. We don't get an Oncotype DX score in the UK so this was all I had to go on. Anyway, after much soul-searching, I decided to stop taking it (not an easy decision - my kids are <10 - and I know I'd feel completely different if I'd had to have chemo).

    I have just received a copy of the reply my onco sent to my GP and he writes "with respect to the individual patient, the risk to her of not taking Tamoxifen is extremely small and if this were her choice, I do not think it would be unreasonable".

    So, that's where I'm at. I feel great (running another 1/2 marathon soon!) and am truly grateful that my 'cancer journey' has not been as awful as it could have been. If the cancer comes back, I guess I will regret my decision, but I can live with it.

     Best possible wishes to all of youLaughingXX

    p.s regarding OC - I took it (on and off) for the best part of 20 years. No family history of BC (except a great aunt who was diagnosed shortly before she died aged 99 of heart failure!).

  • tricianneAust
    tricianneAust Member Posts: 153
    edited May 2011
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    Hi Northern Star I read your update the other day but didn't have time to reply. I don't want you to think we are uninterested in the decisions you are needing to make. I certainly understand how hard the side effects of tamoxifen are and insomnia is the pits. My friend who was diagnosed at the same time as I was has struggled with severe side effects, and was considering stopping taking Tamoxifen. (after 3 months of severe SE they have now settled down) She discussed this with her manager's wife who like Helen was having severe panic attacks 5 years ago and choose to refuse to take it, her manager's wife has so far had no repercussions from not taking the Tamoxifen so that is my wish for you, that all goes well. Severe side effects are so debilitating.

    Meanwhile how are your Vit D levels. My GP checked mine and as is common for many breast cancer patients my Vit D was quite deficient. So now that I am taking the supplements and increasing my sun exposure I feel that I am doing something positive to improve my health in the breast cancer area. Is Vit D deficiency something that you suffer from. Anyway lts of positive thoughts and prayers from Tricianne

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    helo

    this is my first time here....My mother was diagnost last week with mucinous carcinoma....i'm from Israel and here  didn't found such a sea of information llike on this board...just wonted to say thank you all for all this infiormation...my old sister past away last year to brest cancer.she was 36 old...after reading all your information i went to her hospital and took out the all information...she had another tipe of cencer not like my mothers....My mother is 64 old and now we just waiting for answers to all examenation...last week she did the bone can and the blod markers...her lump is 02.-03 sm and another one is 0.5 but not shire what the tipe...i'm so skared to loose a nother one...i have a small family and now it's just mom ded and me...also my sistr left 2 small children...do you think that the metastes went to bones? or other place...????? i can stop crying...please help me....................

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Miki..  First, I'd like to say I am so sorry to hear about the loss of your sister.  I am also sorry to hear about your mom's diagnosis.  You sound like a wonderful daughter and sister.

    Wipe your tears.  You and your mom have found a place where the folks will support you!  We have some sisters in Israel who, I promise, will come along and support you too!

    By now, you've read all about mucinous breast cancer. Often, it does not metastize. It is very early in your mom's journey and hopefully, after her treatment plan is in order, your lives will settle down and both of you will approach a new normal.

    Let us know how both of you are doing. 

    Thoughts and prayers to your mom!

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    voraciousreader thank you for you fast answer....

    for the last 3 days i read tis board from the begining to the end again and again and again....i learn so much...

    i my sister case we make a lot of mistake and lost a lot of time....and i don't want it to hapened with my mom....

    i know that it's just a start of journery but i feel like i sit and do nothing...on 29/06 we will have a meeting with onco+serger do i need to know some thing before? do you think she need to mastectomy or just the lumpectomy? how can i know if it mixed or pure? and in with case we should do himo? i'm so confused......on ultrasound it seams like her lymphs are clean but can i believe it? or i need to ask the doctors to make a biopsiya from limphs too?

    i'm so sorry for all my questions.....i'm really worry....

    Cry

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Miki...Now IS the most confusing time.  The good news is that you are doing your homework and are asking good questions.  So, you're not sitting there and doing "nothing."  You are doing something!Laughing

    First off.  Patience.  And, try not to compare your sister's treatment and outcome with your mom's.  As you can see, each tumor has it's own characteristics and treatment plan and outcome.

    Once your mom has her surgery, they will check the sentinel nodes and only then will they be able to confirm if she has node involvement.  The fact that the US showed no involvement is a good sign.

    Regarding mastectomy or lumpectomy with radiation, the outcomes are usually the same.  The question is can they do a lumpectomy and give her a good result?  That will be the surgeon's call and for your mom to decide.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    I forgot to mention, once she has the surgery, the pathologist will determine if it is pure or mixed

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    thank you very much!!!!!!!!! i appreciate it very much!!!!! one last quetion - what is the diferent betwen pure and mised? is it a diferent tritment? i hope  everything will be o.k....i can't describe how hard it-again....:-(

    so this this the plan for all cases? surgury-himo/radiations?

    thanks God i foind you sisters here!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! bless you

    miki

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Pure mucinous breast cancer is considered a "favorable" histology type of breast cancer.  Mixed mucinous breast cancer has a prognosis more in line with traditional invasive ductal BC.  What does this mean?  Treatment plans are based on the characteristics of the tumor REGARDLESS of whether or not it is pure or mixed.  So, once your mom has her surgery and the pathologist does their work, only then, can you determine a treatment plan.  For example, occasionally a woman with a pure mucinous breast cancer might be HER/nu + and would require chemo and herceptin.  Likewise, a person with a mixed mucinous might be a grade 1 and NOT require chemo.  Of course you would prefer to have a pure mucinous BC that is Her/nu-, which most are, and grade 1 which is NOT aggressive.  Likewise, if you have the Oncotype DX test available, the MO or surgeon might request the test because it will give a more precise indication of the tumor's genetic makeup which can also be helpful in creating a treatment plan.

    Remember, even if it is mixed, there are wonderful, successful treatments!

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    thank you for everything!!!!!!if you were here i would give you a big warm hug!!!!!!!!!!

    i'll try to be patient...and wait for 29/6...i don't shure if in Israel they do oncoype test :-(..this is the first time i hear about it....

    I pray everyday and want to beilive that this is really as some one here wrote " the best in the worse!!!!!"

    thank you again

    God bless you

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    If the pathology report comes back that her tumor is ER+, then she would be a candidate for the Oncotype DX test.  The test is helpful when deciding whether or not chemo would be beneficial.

    Keep us posted.

    Thoughts and prayers and big hugs to you and your mom!

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    thank youy a lot!!!!! i will updating you as i have some news!!!!!!

    miki

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Breast Cancer Recurrence Score Cannot Be Predicted by Traditional
    Clinicopathologic Measures

    • An analysis of 2,097 patients from Clalit Health Services and 484 patients from
      Maccabi Health Services in Tel Aviv, Israel who
      received the Oncotype DX breast cancer tests
      between January 2008 and June 2010 concluded that the RS result
      cannot be predicted by traditional clinicopathologic measures, such as patient
      age, tumor grade, and tumor size.  The study, "Evaluation of recurrence score
      and traditional clinicopathologic assessments in a large ER-positive, lymph
      node-negative patient cohort" (Abstract #632) will be presented on Monday, June 6.

    Additional Breast Cancer Studies Expand Understanding of Tumor
    Biology

    • Based on published data comparing the relative efficacy of aromatase
      inhibitors and tamoxifen in reducing the risk of distant recurrence, researchers
      concluded that an individual patient's Recurrence Score and Recurrence
      Score-Clinical-Pathologic (RSPC) distant recurrence risk assessment can be used
      to determine distant recurrence risk for early-stage breast cancer patients
      receiving treatment with an aromatase inhibitor.  The study, "Using the 21-gene
      Recurrence Score (RS) and the recently developed Recurrence
      Score-Pathology-Clinical (RSPC) to assess recurrence risk in patients with
      node-negative, ER-positive early-stage breast cancer receiving aromatase
      inhibitor treatment alone" (Abstract #592) will be presented on Monday, June 6.
    • Initial data from the prospective, multicenter West German Study
      Group (WSG) Plan B trial examined the relationship between tumor grade and
      the tumor immunohistochemistry biomarker, Ki-67, the invasion markers uPA
      (urokinase-type plasminogen activator) and its inhibitor PAI-1, and the Oncotype DX Recurrence Score. Results
      from a preliminary analysis of 1,795 patients showed that there were only weak
      correlations between all the markers and the Recurrence Score. These results
      reinforce the conclusion that the Recurrence Score result cannot be predicted by
      other clinicopathologic measures. The study, "Prospective comparison of
      recurrence score, uPA/PAI-1, central grade and molecular classification in early
      breast cancer: Interim results from the WSG-Plan B trial" (Abstract #10594) will
      be presented on Monday, June 6.
    • Results from an analysis of 5,644 early-stage breast cancer patients from a
      large US-based oncology group practice concluded that younger patients and
      patients who had better performance status and higher grade tumors were more
      likely to receive the Oncotype DX test.  The study,
      "Evaluating utilization characteristics for the Oncotype DX recurrence score in
      early-stage breast cancer" (Abstract #625) will be presented on Monday, June 6.
    • Finally, an analysis of 1,543 early-stage breast cancer patients from a
      large US-based oncology group practice demonstrated a strong association between
      RS values and adjuvant chemotherapy administration.  This study, "Evaluation of
      relation between Oncotype
      DX recurrence score and
      adjuvant chemotherapy administration" (Abstract #e11105) will be published
      online in conjunction with the 2011 Annual Meeting and citable to the
      Journal of Clinical Oncology as a supplement, but will not be
      presented at the meeting
  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Above link came from the latest Asco meeting.  Very interesting...that's why I am linking it.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    The role of Ki-67 proliferation index vis-à-vis Oncotype DX. Print this page
    Sub-category:ER+ Category:Breast Cancer - HER2/ER Meeting:2011 ASCO Annual Meeting Session Type and Session Title:This abstract will not be presented at the 2011 ASCO Annual Meeting but has been published in conjunction with the meeting. Abstract No:e11055 Citation:J Clin Oncol 29: 2011 (suppl; abstr e11055) Author(s):S. Sahebjam, R. Aloyz, D. Pilavdzic, M. Brisson, C. Ferrario, N. Bouganim, V. Cohen, W. H. Miller Jr., L. C. Panasci Abstract:Background: Most newly diagnosed patients with invasive breast cancer have node negative disease. A key question in management of these patients is the risk/benefit ratio of adjuvant chemotherapy. Several microarray tests have been developed and are currently used to help identifying the patients who will benefit from adjuvant chemotherapy. Ki 67 proliferation index is less expensive and has been used as a prognostic and predictive factor in node positive breast cancer and neoadjuvant setting. Methods: Forty five cases of T1-2 N0 M0 (ER positive, HER2/neu negative) breast cancer were reviewed. Oncotype Dx results were available for all patients. Tumor specimens were stained for Ki 67. Results: The median of Ki 67 index was 17 (range 2-90). The median Oncotype recurrence score was 17 (range 7-60). There was a strong linear correlation between Ki67 index and Oncotype recurrence score (correlation coefficient= 0.74, P value= 0.000). This correlation was stronger in tumors with Ki 67 proliferation index of ≥ 25. Patients were divided to low risk, intermediate risk and high risk group based on expression of Ki 67. All patients in low Ki 67 group (Ki 67 of ≤ 10) had recurrence score of low or intermediate. Most patients (92%) in high Ki 67 group (Ki 67 ≥ 25) had oncotype recurrence score of high or intermediate. Furthermore, neither semi-quantitative immunohistologic expression of ER and HER2, nor nuclear grade had a significant impact on the correlation between Ki67 index and Oncotype recurrence score. Conclusions: Ki 67 proliferation index is a major but not the sole determinant of Oncotype Dx score. Immunologic expression of ER and HER-2 do not significantly impact this correlation. Ki 67 proliferation index can be used to identify patients with a high probability of having increased Oncotype Dx score and requiring adjuvant chemotherapy.
  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    hi

    thank you for your post...it's really interesting...i cheked about the ancotype test...well it seems like for Israel it's very expensive test...so no everybody gets it...they send the tumor to USA and they update the pasient...there are  criterions...

    well...every thing will be more clear after the surgery....what about you? how are you? how long since you were diagnosed? and again...thank you for all the information and the attention....

    miki

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Miki...You ARE doing your HOMEWORK!  What a terrific daughter!!!

    Thank you for asking about me.  If you notice under my posts another box...it describes all the information about me.  Regarding how I feel?  I feel great.  I've been very lucky to have NO side effects, whatsoever, from my treatments.  I healed beautifully and life is good. 

    I wish you and your mom well.  Keep us posted about her journey.  Remember, her journey will be a road map for later lost travelers.....

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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     unfortunately you are so right....i feel like lost traveler....and the Uncertainty can kill you...i lost one really important person to me....it's just crazy....we just start to feel a liitle bit better....to understand that  the life are stronger...and it happen again :-(...not fear...

    i afraid to call her doctor to ask about the bons scan...i just canot do it!!!!!

    we wiil wait for the 29/6....and will pray every day....

    ...

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Miki...Life isn't a linear road.  Thankfully there are compasses to guide us.  Hang in there.  The beauty of life is found in the resiliency of the human spirit.

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    thank you for everything you are one special lady....Embarassed

    i will update with the prosses!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2011
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    Well Voraciousreader I didn't look at this site for two days and now pages later I see how busy Miki123 and yourself have been.Wow well done the two of you. I know VR you like to keep this thread active so people like Miki can find it for such a time as this. Miki quite honestly the beginning of this mucinous cancer journey is very scary when you don't know what you are dealing with. I promise you it will get easier when you have some idea of a treatment plan. I was diagnosed 8 mths ago,(October), my lumpectomy (November) was a much more comfortable operation than I expected, I managed well through the radiation (March/April)and finished that at the beginning of April with no burning. Since then apart from taking the Tamoxifen my life is totally back to normal. My energy is high, I feel really well.The side effects of the Tamoxifen have reduced to being no bother. I am 69 yrs old and am back to full time social work counselling at my church since April. So you may probably find your mother is doing a different journey than your sister so your fears may well not eventuate.You will have read my encouraging verse of scripture in my posts but here it is again and will be my prayer for you and your Mother.Matt 6: 34"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. You have our care & support, you have lots of information, prayer and you are doing all you can. Blessings Tricianne

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Tricianne...Thanks for chiming in!  So glad to hear how well you are doing!  Thank you for also posting such an uplifting prayer. 

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    thanks for the pray you post here!!!!!we need it today...yestarday they call from the medical center and call us to come today and not on 29...well they left the masage to my 12 old niece...i though i havethe stroke...you know all the questions..for shure some thing is not good...we did't gate the bones scan yet...this is my a big fear..i called to the center and they told me that they jut move all pasients from the 29 to 22....i wanted to cry...it's so hard all this fear....

    i will update later what the doctors desided...i keep telling my self that the lump is small and after all i read it must be realy early diagnosted...please God help me this time!!!!!!!

    Frowni'm 31years old....i want my mom with me

  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2011
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    Mikii .Praying for you and your mom right this minute Mikii. The fear is very hard to handle and we think the worst every time something changes. Hey it could be a good thing to get in a week earlier if they are changing everyones appointment. Yes the lump is small and yes it is early diagnosis and if you end up with breast cancer mucinous cancer is my best choice. So hope to hear from you soon. Voraciousreader. have you been away for awhile I have missed your comments, your info is always interesting to read and I learn heaps from you. Blessings from Tricianne.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Miki...We all want your mom to be with you and her grandchildren...especially in light of the loss of your sister.  Now is the time that you must be strong, or at least TRY to remain strong...especially for your niece.  Imagine how she feels now.  The last thing you want to do is frighten your niece of the medical establishment.  Just like us, they will be there to support all of you while you make these important medical decisions.  You are in the gathering of information mode now and it is quite overwhelming.  But don't let it overwhelm you!   I know you have a lot of weight on your shoulders right now.  But don't let that weight break you!  Good luck today...and as always, you and your family are in my thoughts and prayers!

  • miki123
    miki123 Member Posts: 16
    edited June 2011
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    just wanted to thank everybody for yours prayers...we came back home now and they decided to do a mastectomy...well i understood wrong the large of the lump. she has 2 one is 3 sm and the other is 2.5 and somehow they bacame one Frown. so they decided to mastectomy....

    tommorow morning!!!!!!!!!!!!!!!!!!!!!!!!!!!

    please pray for us!

    i'll update later

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Miki....Two tumors 3 cm or less is better than one that is 5.  If you've read this thread, you will see that in the medical journals, some women with mucinous tumors have had them as large as 17 cm and they did NOT metastize!  Good luck tomorrow!  Sounds like she's receiving TERRIFIC care!

  • PLJ
    PLJ Member Posts: 65
    edited March 2012
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    Hugs to you all on your journey. Stand strong!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Trish...Glad you are feeling better and are on the road to recovery!!  Thanks for checking in and keep in touch!

  • katiekabooom
    katiekabooom Member Posts: 10
    edited June 2011
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    Hi everyone,

    I'm so glad you're here, even if I also wish you didn't need to be.  This thread has been such a godsend.  A few days ago, my Dr let me know my biopsy showed malignant cells, and a few minutes ago she called to let me know I had "mucinous carcinoma".  So I've read this thread with interest and will re-read tonight.

    Next Thursday I'll have my first appt with Dr Michael Reedijk at Princess Margaret in Toronto.  He is a Surgical Oncologist who is also deep into BC research.   My H will attend with me, so hopefully we'll be able to ask all the needed questions.

    Can anyone compare the radiation treatment used for MR to any other forms of radiation?  I've had another type of rare tumor - a Giant Cell tumor.  It was in my hand, and for that, i went thru a 29 day course of radiation.  I've actually been hoping surgery+ radiation is my ultimate treatment since radiation is familiar territory :-/  Chemo scares the whizz out of me and to be honest, I'm vain enough to worry about my hair but the fatique, skin burns etc from radiation are all btdt for me.  Weird what one wishes for at times like this.

    Thanks for being here, peeps 

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