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Mucinous Carcinoma of the breast

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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2011
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    Sherbear... I haven't even discussed the cutting edge nanotechnology in the diagnosis and treatment of cancer. That avenue is breath taking. Look it up! See for yourself!

  • Sandysoo
    Sandysoo Member Posts: 13
    edited April 2011
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    Hi Sherbear

       Hi Sherbear.That reply made me laugh and cry, since my diagnosis I have been chain smoking with the fright.

    Im Irish and my excuse was always that I don't drink, so smoking was allowed in a nation of "drinkers" I had to be allowed one right?? How ridiculous? I had my self tortured the other night that would find I had lung cancer really and nothing to do with the lump on my breast. So I smoke more to calm that thought. So Im schizophrenic also for the next week??

    Happy Easter to all you wonderful women out there!!

  • Sherbear
    Sherbear Member Posts: 68
    edited April 2011
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    Sandysoo, I don't smoke myself, but I can imagine with everything that's going on, it's probably more soothing to you and you don't need anyone badgering you to stop and making you more anxious and nervous and stressed.  One step at a time, and when and if you want to stop, you will. :)   

  • NewBride
    NewBride Member Posts: 126
    edited April 2011
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    Sandysoo,  I smoked for over 30 yrs. and thought I would never be able to quit.  Finally tried Chantix.  Ridiculously easy, no need for a support group and IT WORKED!!!  Can't believe I didn't try it sooner.  Really,  no craving, one pill a day,  I could even be around others while they smoked without problem.  Ask your oncologist about it as it is a prescription.  Good luck.
  • TreadSoftly
    TreadSoftly Member Posts: 88
    edited April 2011
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    VR - thanks so much for posting the latest research into mucinous breast cancer!! 

    I was diagnosed with mixed mucinous BC (70% mucinous), 2.9cm, node negative, and was treated as the traditional invasive ductal cancer with chemo, lumpectomy, rads & now tamoxifen. 

    It makes sense that genes and the genetic profile of ones cancer is very important.  I think there is a lot of 'overtreating' of BC and it will be great to see more tailored treatments to ones cancer in the coming years.  In the interim, Im delighted to hear that mixed mucinous is looking more favourable!! Thanks again for your really helpful info

  • PLJ
    PLJ Member Posts: 65
    edited March 2012
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    Edited

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Pj sorry to hear about your diagnosis. Not sure which provinces offers the Oncotype Dx test. There is a Canadian gals thread and you might ask them. Here in the states many of the insurance companies cover it. Some don't and the test costs around $4K. I'm not sure what al Ian blue refers to. When you meet with your doctor, by all means, go over the path report and also nail down that it is pure or mixed. Also check out the NCCN 2011 guidelines. Good luck and keep us posted.

  • Sherbear
    Sherbear Member Posts: 68
    edited May 2011
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    Hi PJ, I'm in Ontario and when chemo was suggested I was given the option of getting the Oncotype test done to help decide how aggressive we were going to be.  It was covered so no cost to me.  I'm 37, 36 at Dx, and honestly keep forgetting to ask about the pure or mixed component of my tumour, but I know it had mucinous characteristics. 

  • PLJ
    PLJ Member Posts: 65
    edited March 2012
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    Edited

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    PJ...One of the problems, as you note, with diagnosing mucinous breast cancers, is that they are often mistaken for being benign.  If it will make you feel any better, mine was missed too! It took the eyes of a second more experienced radiologist to look more carefully at my sonogram, before he was able to determine that I had a "suspicious" cyst.  Imagine, the first radiologist wanted to biopsy a different cyst.  Mammograms often miss mucinous breast cancers.  So unless a woman is getting ultrasounds, as I was, in additional to mammograms, it could be missed or mistaken for a very, very long time.

    Now for the good news.  If you have a "favorable" mucinous breast cancer, it's very likely that it can grow for years and not metastize.  I posted some of the literature on this thread and there was a woman with a whopping 17 centremeter mucinous breast cancer (almost the size of ANOTHER breast) that had been growing for years and hadn't metastized.

    Good luck and thoughts and prayers to you!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Bump

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Bump

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Bump for gardengirl

  • PLJ
    PLJ Member Posts: 65
    edited March 2012
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    Edited

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    PLJ... As you know by now, the time between diagnosis and treatment plan is an emotional roller coaster. Regarding vascular invasion, I can only speak about my situation. Since mucinous tumors look like benign cysts, they are usually well circumscribed. That means they have a distinct boarder. My radiologist was looking for vascular invasion and I remember her saying that a vascular invasion would be difficult to to get into my tumor. I didn't get into a discussion with her why she thought that was the case. Instead I was very relieved to hear that there was no invasion. PBJ, I know how hard it is for you now. The only advice that I can offer you now is to be patient. If you are happy with your team, hopefully the process will run smoothly and when your treatment finishes you can return to enjoying your life. Believe me, I am not pleased that I am now in this vortex, but I am now making plans again and not worrying about tomorrow or next month or next year. You will get there. It takes time. Thoughts and prayers to you. Oh, I almost forgot. I wasn't too delayed in getting properly diagnosed. And once I was, I never doubted for a moment how things would turn out.

  • VQM
    VQM Member Posts: 2
    edited May 2011
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    Hi all. Although this is my first post, I discovered your community last fall while researching my diagnosis of mucinous breast cancer. Not a lot out there, as has been noted, so this thread has been very helpful. So far I’ve been very comfortable with my course of treatment: lumpectomy/ SNB and full-breast radiation. RS of 14 on the Oncotype assay eliminated need for chemo, thankfully. Now I’m doing some more research around hormonal therapy (which I had deferred a bit to deal with an unrelated medical issue). As I’m 55 and post-menopausal, I’m a candidate for an AI.



    Voracious Reader, thanks for recommending the 2011 NCCN Guidelines. I had completely missed this valuable resource. I was very interested to see that favorable histologies, including mucinous types, have a separate set of guidelines, and that for my particular tumor characteristics, hormonal therapy “may be considered.” My MO had presented it as more of a necessity than an option to consider. When I tried to ask her about specifics for mucinous bc, she said treatment is based on whether the cancer is invasive or noninvasive, and type is not factored in at all. But that does not seem to be the case. She also dismissed the idea of MRIs, which I had asked about because of the Perkins study. I’ll be raising these issues again when I see her next month.



    Of course, if one has cancer and the only concern is about OVER treatment, that’s a good problem to have! But it’s a concern nonetheless, given the potential side effects and long-term health risks. Does anyone have any more info on treatment guidelines/ best practices for “our” bc, specifically around hormonal therapy? I know it ends up being a very individual decision, but it would be great to have more data to inform that decision!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    VQM... I am sorry to hear about your diagnosis and you have to join our party. You summarize well the issues we face when making treatment decisions. I wish there was more information available to help, but unfortunately, since there is little research, then there is little data to help in the process. As I mentioned before regarding my situation, my MO dismissed the NCCN guidelines and said he bases my treatment on the Oncotype test. I find that interesting because if you recall from reading the NCCN guidelines... They don't even recommend the Oncotype test! Soooo, what to do? I don't know how old you are, nor do I know what your medical history is. All of these things should factor into whether or not you should take an AI. Personally, I said I would do everything and reconsider my decisions if I had side effects. So far, I am doing well, so I stay the course. I wish you well and hope you will continue to post so other women will have a map for the journey.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Oh, regarding an MRI.... absolutely advocate for one! And if she disagrees... Then find a doctor who will do one! I had a drop of DCIS next to the tumor that the mammo and ultrasound missed. that would have meant additional surgery or a surprise on operation day had I not had the additional MRI. My radiologist is deferring to the BS about when to do my next one. Right now, my radiologist is comfortable not doing one so soon. I am okay with that. The important takeaway message is that you trust your team and you are included in making your treatment decisions. Good luck!

  • VQM
    VQM Member Posts: 2
    edited May 2011
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    Thanks for your responses, VR, and best of luck to you as well.  I will post back with anything I learn along the way that may be of interest to others going through this.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Cancer Epidemiol Biomarkers Prev. 2011 Apr;20(4):715.

    Oral contraceptive use and parity associations with uncommon breast cancer histologies in the breast cancer family registry: the role of family history.

    Work M, John E, Andrulis I, Hopper J, Liao Y, Hibshoosh H, Terry M.

    Abstract

    PURPOSE:

    The effect of parity and oral contraceptive (OC) use on breast cancer risk differs by cancer subtype as defined by histology. Family history of breast cancer impacts decisions regarding both parity and oral contraceptive use; it is unknown whether reproductive risk factors are related to uncommon histologies in women with and without a strong family history.

    METHODS:

    Using population-based data from the Breast Cancer Family Registry, we conducted analyses using unordered polytomous regression to determine the role of family history in associations between parity, OC use, and breast cancer histologic subtype, among 3,260 cases and 2,997 controls. Histologic types examined included ductal and lobular as well as the uncommon histologies of mucinous, tubular, and medullary cancer.

    RESULTS:

    Twenty-eight percent of cases and 9% of controls had a family history (defined as at least 1 first-degree relative with breast cancer). Cases with and without family history were similar in regards to OC use (75% and 73%, respectively were ever-users) and parity (2.08 children in cases with family history, 2.10 in cases without). In a multivariable model, when compared with controls, OC use was inversely associated with tumors of mucinous histology (OR = 0.43, 95% CI 0.23-0.79 for use ≥5 years vs. never use). There was a stronger inverse association with OC use and the mucinous subtype among those without a family history (OR = 0.27, 95% CI 0.13-0.57), and a nonsignificant positive association in those with family history (OR = 2.19, 95% CI 0.40-11.84). High parity (≥3 children) was positively associated with medullary histology (OR = 2.62, 95% CI 1.16-5.91, compared with nulliparity); the association was stronger among women without a family history (OR = 4.31, 95% CI 1.67-11.12), and was not significantly associated among those with a family history (OR = 0.36, 95% CI 0.06-2.29). Parity was inversely associated with the mucinous type (OR = 0.45, 95% CI 0.21-0.96, compared with nulliparity), and this effect remained stable in women with and without family history.

    CONCLUSION:

    This study suggests that selected reproductive risk factors may only be related to uncommon breast cancer histologies among women without a family history of breast cancer.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    For the record...3 kids here...never used OC. 

  • Sherbear
    Sherbear Member Posts: 68
    edited May 2011
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    Me: no kids, OC use for almost 10yrs, no family history of BC

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    No family history either....

  • Sherri_V
    Sherri_V Member Posts: 35
    edited May 2011
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    No family history for me, either.  Used OC for one month...made me sick so I stopped.  Turned out we had fertility issues anyway. 

    Now that I'm finished with active treatment, my aunt, at least 20 years older than me, has been diagnosed with bc.  Tests show that neither of us have the family gene...odd.

  • NJvictoria
    NJvictoria Member Posts: 45
    edited May 2011
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    No family history for me either :)

  • Sandysoo
    Sandysoo Member Posts: 13
    edited May 2011
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    Hi Sherbear.

    First of all thank you all so much for your support when I was frantic from the diagnosis. I had the surgery almost 2 weeks  ago and they got a clear margin. I had a wide local exision. I now will need chemotherapy and Radiation (Yikes!!) as it was found it my lymph nodes. I hope you are all doing well so far.

    Best regards

  • Sandysoo
    Sandysoo Member Posts: 13
    edited May 2011
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    Hi newbride

    Thanks so much for that advise. I will ask the oncologist for that prescription.

    Im still laughing at the idea of me smoking after all this.

    The power of addiction knows no bounds eh?

    Many thanks again.

  • Sherbear
    Sherbear Member Posts: 68
    edited May 2011
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    Hi Sandysoo!   Glad that you've made it through surgery and got clear margins.  Did they go over the pathology of your tumour yet?  Sorry about the node involvement, was it found in a lot of them?  Your team is recommending chemo and radiation, has there been any talk of the Oncotype dx test?  Sorry about all of the questions, I realize this is still a crazy time.  :)

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    Sandysoo...Seems like your doctors are following the correct protocol.  Good luck!  Thoughts and prayers to you and hope the chemo responds gently to your body. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited May 2011
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    bump for nicola