Mucinous Carcinoma of the breast

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  • EnELLE
    EnELLE Member Posts: 42
    edited December 2014

    Voracious - you also stated in your post about a 50% reduction risk, which is incorrect, you should have stated 50% relative reduction risk. Remember that for example 1 to .5 represents a 50% relative reduction and in real numbers it is a .5 absolute reduction. 

    From the article;

    When you run this against the numbers and run some other calculations, you end up with a 49% less likelihood of getting breast cancer. When you look at real numbers, the incidents of invasive breast cancer is 6.76 per thousand with the Placebo group and 3.43 with the Tamoxifen group (page 6 in study). In real numbers, this means 641 additional women will not get cancer this year if they take Tamoxifen over those who do nothing.

    Net result: Less breast cancer, more endometrial cancer, more strokes and more pulmonary embolisms. While you are less likely to develop invasive breast cancer, you are more likely to get something that could kill you."

    And it doesn't have the numbers for liver cancer caused by tamoxifen either.  I just wish there were absolute numbers for women who did/did not take tamoxifen that had mucinous....

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    En....there was, I believe a Japanese study that gave neoadjuvant tamoxifen and it was effective at shrinking the tumor. You can check pub med for the study or read further back on this thread. I linked the study.


    Regarding giving Tamoxifen preventitively....much of the same could be said for MANY drugs and illnesses. For example....statins. We know for men who have already had a heart attack, statins are very effective at reducing the chances of a second heart attack. As we move down the chain, the benefit of taking a statin is less likely to reduce the chance of a PRIMARY heart attack for other cohorts. And we all know that there are inherent risks of taking a statin, such as rhabdomyolsis and kidney failure. Last year it was also reported that it can increase one's chance of getting diabetes....which is pretty interesting, because, a few years ago it was recommended that people who were diabetic should take a statin because they were at an increased risk of getting a heart attack and it was believed a statin would reduce a diabetics chance of getting a heart attack.


    En...the bottom line is what I said in an earlier post....everyone needs to discuss their own risk factors and then make an informed decision if taking Tamoxifen is right for them. Tamoxifen has been studied for more than 30 years. A relative reduction of 49% is a very significant number if a person's absolute risk of recurrence is 20%....That would translate into reducing one's risk of recurrence from 20% to 10%... As you can see from my signature....if you believe in the OncotypeDX test, my OncotypeDX score of 15 falls into that 20% chance of recurrence if I do NOT do endocrine therapy. For me, I think endocrine therapy is the way to go.


    With respect to getting a more aggressive recurrence.....I've heard of that, but haven't found anything to support that statement with respect to mucinous breast cancer. If you have any studies supporting that idea, specific to mucinous BC, I would love to read it.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    en....with respect to getting endometrial cancer...you have read the Atlas study and their conclusion? There was a slight increase in getting endometrial cancer after ten years of taking tamoxifen. However the authors of the study concurred that endometrial cancer could be far more easily treated than a distal breast cancer recurrence.


    En...I do not wish to debate you. Nor do you need to tell me the difference between relative and absolute risk. I took statistics in college and took classes that required research. I do believe that for most people reading studies and understanding them is difficult and then taking the studies and deciding how meaningful they are to each of us is a herculean task.


    You have clearly decided that for YOU, the data does not support taking the medication. You have every right to make that decision. Likewise, I have read the same studies and believe endocrine therapy is right for me.



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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC409346...


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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.ncbi.nlm.nih.gov/pubmed/25277504



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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.ncbi.nlm.nih.gov/pubmed/23219286


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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.ncbi.nlm.nih.gov/pubmed/22277312

    OK! Found the Japanese study...patients with mucinous BC were given neoadjuvant CHEMO and did "poorly"... (Tumor didn't shrink much). Authors believed it was necessary to try other protocols (implied....neoadjuvant endocrine therapy).

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.ncbi.nlm.nih.gov/pubmed/24522992


    Here is an example of neoadjuvant endocrine therapy on elderly patients. Those with Grade 1 tumors did especially well.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.ncbi.nlm.nih.gov/pubmed/23891267


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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    http://www.nejm.org/doi/full/10.1056/NEJMoa1412379


    Results from San antonio breast cancer symposium


    Ovarian suppression...SOFT and TEXT trial

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited December 2014
    VR, I just want to make sure I read that correctly. For someone like me whose oncologist feel I have a very low chance of reoccurance and I did not receive chemo then the study showed there was little to no benefit of adding ovarian suppression. Is that correct? My Oncologist and I were waiting on the results of this trial to decide whether or not to add it to my treatment regimen.
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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    Sun....The study indicates for younger women who had chemo and then continue to menstruate, there was significant data to support ovarian suppression. Clearly, their risk of recurrence was greater to begin with, since they received chemo. Now, with respect to everyone else....as my MO had expressed years ago....he did not expect there to be any significant data for the present time. If you read the study carefully, it says that those who have low risk of recurrence might recur late in life, so you can't see yet or project. Likewise, we might never know, because too many people have been lost, so the actual difference might never be statistically significant.


    The good news coming out of the study is that those of us who never had chemo and are older appear at low risk of recurrence in the near future.


    Please let us know what your physician thinks!

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited December 2014
    I will! I see her again in March and this is on our list of things to discuss. There's been an ongoing debate between my MO and gyno over my ovaries. She (the MO) thinks I need no further treatment other than tamoxifen. He (my gyno) thinks I need my ovaries out and need to go on an AI. His wife also has cancer and he thinks that with my high estrogen levels (100%) the ovaries need to go. I know they are communicating with each other over this trial so I may hear something from one or both before my next appointment.
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  • Golden01
    Golden01 Member Posts: 916
    edited December 2014

    Bad news from here, I have developed a lump on my scar line and am going in to have it surgically removed tomorrow. I will take along copies of the pathology reports (first ones and the second opinion from the NCI cancer center in my state). Is there anything else the pathologist should know? To get me in quickly, it is at a hospital that I haven't been to before and it is not affiliated with the university's cancer center. Hoping it is a cyst but of course worrying that it is more. Any advice will be appreciated.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    Golden...I'm very, very sorry to hear about your development. I can't think of anything else to do with respect to the procedure. I don't need to remind you of the importance of the pathology report. I sincerely wish you well with the procedure. As always, my thoughts and prayers are with you and of course all of our sisters on this journey.

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  • Golden01
    Golden01 Member Posts: 916
    edited December 2014

    Thanks for your good wishes!!

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  • tricianneAust
    tricianneAust Member Posts: 162
    edited December 2014

    Lots of prayers and healing thoughts Golden01 from this side of the world. May all go well with you, Thanks again VR for all the research you do for us. Blessings Tricianne

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  • Golden01
    Golden01 Member Posts: 916
    edited December 2014

    Thank you! I am much calmer about it all than I thought I would be . . . almost a "been there, done that" feeling. Will be glad when we know what's what.

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  • Golden01
    Golden01 Member Posts: 916
    edited December 2014

    Surgery was short like the doctor said. Now the waiting begins. Should have results early next week. She was VERY noncommittal about any observations. Of course, my husband and I were hoping for her to say it looked like a cyst or something not serious. She didn't. Now back to work and packing for my holiday trip - home to Nebraska for my Mom's 90th birthday!

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    Golden....I will keep you in my thoughts and prayers as you wait for news! My mom is celebrating her 90th birthday soon as well! What a wonderful milestone! We had planned any intimate party for our mom, just children and grandchildren. However, as soon as word leaked out, EVERYONE wants to help her celebrate! She is quite a character! Looks between 10 and 15 years younger than her age. Still can read a book faster than me and stuns most everyone she meets when she asks for their email address so she can send them something!


    We are really blessed to have our moms!

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  • agapornis
    agapornis Member Posts: 67
    edited December 2014

    Golden, I hope you receive good news and the lump is nothing serious. Enjoy your trip to Nebraska and happy birthday to your mom.

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  • hymil
    hymil Member Posts: 826
    edited December 2014


    EnELLE posted Dec 10th: On a side note - has anyone or know anyone with mucinous who was given tamoxifen as a neo -pre surgery to shrink the tumor? I know that chemo will not shrink mucinous before surgery (per several of my Drs.), but if tamoxifen is so effective - wouldn't it be used often to shrink them prior to surgery???

    I was. I took it for four months. I felt awful on it, and No, it didn't shrink the tumour. Possibly because the mucus prevents the drug from getting at the actual live tumour cells. I stopped it for surgery (DVT risks) and never went back on. All the rotten side-effects cleared, I am not kidding, within 48 hours of stopping.

    I do have to say that the path report at surgery showed small pools of mucus, but no cancer cells, in one of the lymph nodes - so, had they travelled there from the primary or did they grow there: had there at some stage been cancer there, that the T had subdued? I will probably never know.

    I did read about the raised contralateral recurrence risks and have since had second mastectomy - it doesn't totally eliminate the risk but drastically reduces it. I feel I can basically put BC in the past now until proven otherwise. It's such an individual choice.

    And I do agree with KatHatesCancer (Dec 4th) that the doctors can and should recommend best appropriate treatments, but the choice is up to us whether we accept or refuse treatment, and we have to accept the risks and responsibilities of that choice. I have no dependants now, but my choice might have to be different if I still had small children to think about.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    hymil....congrats on reaching your 5 year milestone!

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  • EnELLE
    EnELLE Member Posts: 42
    edited December 2014

    Hymil...thank you very much for your input from your experience, I appreciate it.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    Golden....I'm thinking of you...any news yet?


    💕

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    missed posting this earlier...better late than never....

    http://meetinglibrary.asco.org/content/130889-144


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  • EnELLE
    EnELLE Member Posts: 42
    edited December 2014

    Voracious...thanks for posting the Does endocrine therapy in mucinous and tubular breast cancer improve outcome? article. Interesting that the last line states that No benefit of ET was seen in tubular or EPG mucinous ca, suggesting selected women may be safely spared the side effects and costs of treatment. ET stands for endocrine therapy for those who have not read it yet. I think quite a few of the ladies that read this mucinous thread are in the EPG (Excellent Prognostic Group) mucinous group. Good news..thanks again for the info.

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  • Golden01
    Golden01 Member Posts: 916
    edited January 2015

    Have been off the boards while in Nebraska celebrating my Mom's 90th birthday! Received good news on December 24th when my breast surgeon called and indicated the pathology report showed an "inclusion cyst" which is benign. I'll see her next week to learn more but she said that type of cyst could occur anywhere and mine just happened to show up on the incision line. It truly was right above the spot where my breast cancer occurred so I was really scared. Thanks for all the good wishes.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited January 2015

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  • agapornis
    agapornis Member Posts: 67
    edited January 2015

    Great news Golden. So happy for you.

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