Mucinous Carcinoma of the breast
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Thanks Golden! Our researcher will be appreciative!
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Wow VR! You are amazing! Lots of info to take in, like you said. But it sounds all very positive.
I am going to however, let it all process! Thank You so much VR!
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Hi Nottoday,
I'm in the same situation as you. My first oncologist ordered a Mammaprint which came back high, 29%. I am now at City of Hope and they were confused by this result. They re-evaluated my slides to confirm that I am definitely Pure Mucinous. They've ordered an Oncotype since that's the test that they prefer however it's taking a really long time, going on 4 weeks, 3 to go since there was an insurance issue in paying for both tests. They've seen Mammaprint be off in the past and since confirming that my type is Pure Mucinous, they will present me to the Tumor Board when the Onco comes in. My biggest concern is that chemo doesn't work on mucinous. They've never seen our type patients with high Oncotypes or Mammaprints so are equally stumped. I know VR mentioned there were others which I vaguely recall when I first read these threads, I need to go back and look them up again.
VR - thank you for all that you do!!! Digesting what you've posted I'm sure there will be many follow up questions.
Everybody - if you use Amazon, there's a service called Amazon smile (smile.amazon.com) and you can donate part of your purchases to a charity of choice. Komen is one of them. ;o)
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Thanks Voracious for posting the info and the links! As a lay person, I could not access the articles on a couple of the links...if you have time, could you please post the text from the links...?
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EnELLE....
All of the links that I posted direct you to the PubMed abstracts. Some of the abstracts just name titles of papers or give small overviews of the topics. Only one of the studies includes a link to the full text of the journal's article. That said, are you having difficulty opening the links to the abstracts that I provided? If so, use a different browser to open the links. Popular browsers are Chrome, Firefox and Explorer.
For most articles, if you want to see the full texts of the articles, then you would need to pay. Only on occasion, do I purchase published articles. When I do so, I purchase them through my local library. Sometimes I get lucky and don't have to purchase the complete article because my library owns the journal, such as JAMA, The Journal of the American Medical Association, and I can read the entire journal.
Hope that I've clarified the situation for you. By all means, if you have any further questions, please post!
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Oh lordy.. 3 months since I popped in. Summer and another sailing adventure and started an odd new job. Finally fixed things to hopefully receive notifications for this thread (I'd changed my email address and apparently that reset everything) So, am here now and about to spend the evening reconnecting with all of you and your news!
Popped into to update about my tamoxifen adventures. They changed the brand about six weeks ago. I soon began getting chronic sore throat, bloating, discharge, aches, weak bladder. GP did full physical, and as I suggested, agrees the change in brand of tamoxifen is likely the culprit. So bizarre. Since I only have a couple months left on it, I decided to go off.. seeing oncologist tomorrow to update him and start an aromatase inhibitor. Hoping he agrees that all those symptoms are nothing more than side effects and soon will improve. The other interesting tidbit of info is that I see a blood analysist specialist as well (an alternative thing) He showed me in my blood what tamoxifen had started to do that wasn't great, and explained that the A.I. actually will heal that part. Interesting.
Now.. off to read about all of you. In the meantime, HUGS0 -
Really, VC, I get to look forward to shivering and stiffening? Ha ha.. I just read your post about A.I's. Did you do 2 years tamoxifen, 2 A.I's.. or? Haven't checked NCCN recommendations lately, but I have noticed some people are having longer protocols of Tamoxifen and A.I.'s.
It's nice to connect here, get updated on research and resources and info, and feel that compassion we have for each other.
I do get a whack out of my energy level when I'm reminded that there still seems so little known about mucinous with HER2+. Ugh. But alas, I am doing well!
Good wishes to each and everyone. I see others have had/are having chemo.. wishing you ease and speedy healing! Well, I wish that for all!0 -
Magic...glad to hear you are doing well. Hope you take comfort in knowing at a recent visit to Sloan Kettering's rare breast cancer lab that I reminded them of you!......No changes in NCCN guidelines....I'm still stiff...but the more walking I do, the more limber I feel! Take care!
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I absolutely do take comfort in that, Voracious... it's good to know that people who are really paying attention - You and Sloan Kettering - know I exist. Thank you for that.
I start A.I. in two weeks... it'll be a great excuse to keep active. ~smile~
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Hi All,
An update to my situation... My oncologist phoned the other day with the results of my Oncotype which was a 17. The first test, Mammaprint, was high, 29%. Since City of Hope prefers the Oncotype he's ok with me passing on chemo but will still submit my case to tumor board to discuss the discordance. Our next meeting we'll discuss radiation and tamoxifen.
Nottoday, maybe it's worth getting both tests and see if they match. My current doc prefers Onco but my prior ones swear by mammaprint. I'm still confused but we'll see what they say Tuesday.
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lahelena...glad the tumor board is involved. Please let us know what they say and what you ultimately decide. Once you have a treatment protocol in place, the journey should grow a bit easier. Good luck!
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Dear Lahelena,
Sorry I'm so late getting back to you. I've been off the boards for awhile. After a lot of research and deliberation as well as getting more information about the Oncotype DX score, I've decided to proceed with chemotherapy. It seems to make the most sense for my case. But we all know, each case is different. Best wishes for your own treatment and recovery.
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notto...glad you have finally made your active treatment decision. I wish you well during active treatment and beyond. That said, we are here for you! Good luck!
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VR, thanks so much for sharing your SK visit! I'm grateful to the researchers and I'm grateful to you! I love knowing about so many passionate researchers out there.
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Voracious, I finally read through your report of your SK visit. Wow. and thank you so much!! I see I missed your call for pathology reports. If I ever need to send mine your way, I'd be happy to.
Very good to hear funding is from Komen. They talk a lot of hits in the media for money used for administration... and we seldom hear true stories of where the money goes other than 'research'. Definately will make a donation again!I'm curious.. have any of you signed up for the Dr. Susan Love Research Army of Women, and Health of Women programs? I just did last night after my friend returned from Florida raving about Dr. Love's keynote speech at the international dragon boat festival. The way I figure, it doesn't hurt to sign up to be found re research, and if rare diagnosis helps researchers, then it's especially worth putting ourselves out there.. http://dslrf.org/actwithlove/
Any thoughts or knowledge around this organization?0 -
Hi everyone just rejoicing at my fourth year mammogram as all looks perfectly well. The radiologist actually couldn't find my scar as the skin has healed over so well. Just one year more on Tamoxifen and that's all the treatment finished.The rest of my life is super busy so its wonderful that I feel so well. I go for my 13th year bowel cancer checkup (that's also mucinous cancer) shortly so hopefully that remains clear as it has each year so far.) Continuing prayers for you whichever part of the journey you are on. Blessings Tricianne.
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triciannne! I'm so glad to hear that all is well! I'm coming up on my 5th year since diagnosis and am also doing well. Life is good! As always, I keep you and so many of our sisters in my thoughts and I also continue to keep everyone in my prayers!
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Great to hear your news, Tricianne. And yours as well, VR. Keeps all of us smiling ear to ear, I think! Life is grand, ain't it!
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Tricianne and VR! So glad to hear your great news. And best wishes to all sisters.
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Thankyou for all the kind messages, its certainly a most supportive website. Good to hear your healthy update too Voraciousreader.
Best wishes to you all
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Good morning! It's been quite a while since I've posted in here but needed to 'talk' some where that individuals might understand. I was diagnosed on 3/2012 with mixed mucinous, stg 1A, had 2 surgeries, radiation and up until yesterday had taken my tamoxifen. While I realize it's ultimately my deicision, I would love to hear your input about stopping the tamoxifen. My rationale: I feel as though I am damned if I do and damned if I don't. After seeing Tamoxifen listed on the 'Substances Listed in the Thirteenth Report on Carcinogens', well, it kind of made me sick! I feel as though I must chose between another breast cancer or (in my mind) a far worse GYN cancer. Again, I would appreciate your two cents. Thanks!!0 -
Stena...I hope you are doing well! Regarding taking Tamoxifen...a recent study confirmed the benefit of taking Tamoxifen for 10 years. The ATLAS study said that the risk of another cancer was much smaller than the benefit of taking the drug. That said, not all early stagers are alike and everyone needs to speak with their physicians to assess their ACTUAL risk of recurrence and then decide what course to take.
One last point...my MO told me that doing endocrine therapy reduced my chance of getting a new primary breast cancer MORE than it protected me from a recurrence.
I wish you well!
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Thanks, voraciousreader! I was hoping to get a response from you as I've seen many a post from you. :-) I think I will just keep taking it until I see my Med Onc late Jan. Happy Holidays!0 -
Hi,
I decided to weigh in on this one, because, while I'm three years into remission, the question of tamoxifen stays with me. I had stage 2 mucinous carcinoma, 6cm tumour ER+, PR+ with no affected lymph nodes. I had two lumpectomies, 35 rads, and A LOT of conversations regarding the rest of my treatment. Because I was only 30 when I had cancer, my oncologist wanted to be aggressive in treatment. I refused chemo, insisted on the onco type test, which thankfully backed my resolve.
I also refused tamoxifen, much to the shigrin of my oncologist. There were a couple of reasons I did this: 1. With mucinous, the recurrence rate is a little lower. Mine was 16% without tamoxifen, and 9% with. 2. The potential side effects were too scary- at 30, I needed to get healthy, so I didn't mess up my future.
My oncologist told me that even a year on Tamoxifen would make a difference. Two years would be better, three more so, and so on. The point is, any time spent on the drug is beneficial.
I don't regret my decision one bit, but I do carry some worry about recurrence- and maybe this is normal, whether you take tamoxifen or not. Even with my worry, I have no regret. Not doing what I was told to do was the right choice for me.
So I will say this to you: if you are ready to stop the drug, then stop. Listen to yourself- you know better than anyone what is the right choice for you.
And as the previous poster suggested-,knowing your own specific recurrence rates might help you decide- they say tamoxifen halves your recurrent rate after ten years of use. Maybe this will be worth it for you, if you are starting at a 50% recurrence rate, maybe it isn't worth it, if you are starting at 10%. I was told that increase in risk for other reproductive cancers w tamoxifen is about 4%. So for me, it was 4% one way or a 6% decrease + potential side effects the other.
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Thanks, Kathatescancer! I feel as though we are going to always carrying some type of 'what if' regardless of which direction we choose. What I have decided is that I will continue taking my Tamoxifen until I speak with my Med Onc & review my chart for recurrence rates. Even though I have been very fortunate to have no side effects (minus some thinning of my hair), I feel as though I'm willing putting poison into my body every morning. With that being said, I am ready to be done with it.Thank you all very much for the support!! :-)
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Hi Stena3912, While I can see your concerns it may encourage you to know my stepmother who had quite an aggressive breast cancer grade 4, this was all the info the specialist told us,19 years ago has experienced none of the warned about side effects from radiotherapy and tamoxifen, both of which were stronger doses that what I have had to deal with the MC breast cancer that I had 4 years ago, (she also had a mastectomy on the affected breast and a breast reduction on the opposite side) She is 90 years old now and has no cancers anywhere, no heart problems or lung problems from radiation in fact other than some dementia & incontinency she is pretty healthy all things considered and really appreciates being small bosomed since her op.
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Here's some food for thought when looking at absolute percentages and relative percentages in regards to true risks when taking tamoxifen or any drug..scroll down a few paragraphs to get to the numbers analysis on tamoxifen
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EnElle...The link that you refer to speaks to the way in which clinical trials are reported. When ALL types of trials are announced, they are described in "relative risk" which is usually much greater than "absolute risk.". Many biostatisticians have made note of the distinction and have been advocating for disclosing data in a more user friendly way and that is in " number needed to treat, NNT."
That said, a 50% relative risk reduction IS a very significant number, while the absolute reduction is much smaller. That is why, each person needs to discuss with their doctor what their absolute risk of recurrence is and then decide if a 50% reduction risk is worth taking when deciding if they should do the treatment.
What the link doesn't discuss is the protection that Tamoxifen offers for a second breast cancer. Many of us may have a "favorable" breast cancer and our chance of recurrence might be small...however, since we have had a breast cancer, we are at higher risk of getting a new one. And that risk reduction garnered by taking Tamoxifen in absolute terms might be more important.
Without a doubt, EVERYONE needs to crunch the numbers in a meaningful way that helps them make the best informed decision.
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EnElle...Harvard professor, John Abramson, MD, wrote a terrific book a decade ago, Overdosed America, which does a great job of explaining this controversy. I highly recommend reading the book.
http://www.amazon.com/Overdosed-America-Promise-Am...
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Voracious-you may have not read these 2 paragraphs in the article-see below.
"The net result is 102 women less per year get a serious disease using Tamoxifen as a preventative than those who do nothing. One question I have, however, is what were the numbers for other types of cancer (brain, lung, liver, colon, breast) between the two groups, as it may actually put Tamoxifen on the negative side of the equation. Oh, and one more thing, the study was choosing women with a higher risk of breast cancer. If we were to re-run these figures with all women, what would the numbers look like. As a side note, Tamoxifen is horrible on the liver and is known to increase the risk of liver cancer by a large factor, yet that is not included in this study (it was never tested).
End Result: Tamoxifen was approved as a preventative drug in high-risk patients because it reduces the relative (low) risk of breast cancer by 49%, despite the fact that the real benefit, spread across diseases and medical conditions studied is extremely low. Even if we examine it myopic, the benefit, in real numbers, is very, very low."
And here is a study that cites that 5 years of tamoxifen increases the chance 4.4 fold of getting hormone negative contralateral breast cancer, which is more aggressive.
http://www.medpagetoday.com/HematologyOncology/BreastCancer/15674
From my small number of exposure to friends that took tamoxifen and later got cancer in their other breast that was a difft, more agressive type, I am biased against tamoxifen for long term (3-10yr) use.
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???
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