Mucinous Carcinoma of the breast
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Thanks for the clarification NLR! I am happy to hear you are doing well.
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Hi nancy, the chemo/no chemo must be tough, I was told by my team after surgery it would be off no real benefit to me, 5cm stage 2 pure mucinous 0/4 nodes, I did have 6 weeks rads though. All I asked my team was what if I was your daughter what would you advise, I was still told no chemo and that was good enough for me.
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Hi all, just thought I'd post an update. I did end up starting chemo this past Monday. With high intermediate Onco scores, the big factors for me were lymph node involvement from two small (8 & 7mm tumors) and a ki-67 score of 30%. Oh and I am not 100% ER+. My onc basically said mucinous tumors are usually bigger and don't make it to the lymph nodes. It's not totally clear to me whether he doubts its pure mucinous or if he just sees that it isn't following the normal course. Either way I am on board with this plan. First treatment was very uneventful. Yesterday was the only day I didn't feel well. Now I'm hanging out in the June chemo thread.
NLR - given your situation, I would do exactly what you are doing. So glad you made it to Atlanta!
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grace...thanks for updating us! Good luck with your active treatment!
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My appointment with my MO is in a few days and I'm planning on stopping letrozole because it has created such brain fog I've lost one job. Started a new job this week with the brain fog. I know it's the letrozole because I never had this problem before it came along. I looked over my pathology report and wonder how wise I am. Mucinous, Estrogen Receptor 100%, Progesterone Receptor 100%, Her-2 neg, Ki-67 3%.
I'm 62, had a total hysterectomy at 30 and stopped hormone replacement therapy at 50. I shouldn't have a tremendous amount of Estrogen or Progesterone in my body to begin with.
I know my MO will tell me not to stop letrozole. There are so many informed women here and I'd love their response, especially what would you do?
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Livin I'm also 100% ER and PR positive. Estrogen is produced elsewhere in our bodies outside of the ovaries. I am overweight and I know I have it hiding in my extra fat. It's also in foods we eat (think dairy-cows are given estrogen).
There are other options of medications and the SE's are different with all of them. So if you are asking me what I would do, I would ask to try another one of the AIs. Since my cancer is feeding off my estrogen, I'm doing all I can to stop it. I'll be discussing ovarian suppression with my MO in August. I have my ovaries and that's it. Everything else was removed.
Good luck in your decision! Ultimately it is up to you!
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Livin...Sun made some wise suggestions. You can certainly try another AI, or perhaps try Tamoxifen.
I know how side effects can affect quality of life. Since I switched from Tamoxifen to an AI, my body temp feels as though I am always at a slow simmer. I've made some physical adaptations, like buying a new wardrobe and wearing a Frogg Togg Chilly Sport around my neck all day long. And, I walk more now than I ever did before, to keep my body from stiffening. So, there you have it...my life revolves now around simmering and stiffening.....My MO claims my symptoms should get better over time. VR has never been know for her patient virtue!
Good luck with your appointment! Let us know what you decide! Thoughts and prayers to you and a few gentle hugs as well!
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I agree with Sunshineinky, ask you MO about other medications. Meanwhile, take a drug-vacation and get a good start on that new job! My MO wanted me to start on an AI and then switch 2.5 years in to Tamoxifen, because I am already osteopenic, we switched it around and did the Tamoxifen first. this gave me time to "work on my bones" with plenty of vitamin D, calcium, and exercise The studies on the order showed there was really very little difference in terms of recurrence. Also, ask about different dosage schedules, My MO started me on 10 mg Tamoxifen twice a day as he feels some women have fewer side effects that way. I've continued that because if I forget a pill, I've only missed half the dose for the day! I know other women that take their medication at night, others that need to take it in the morning, lots of things to try if you do decide to continue medication. ASCO recently published new guidelines on medications for women like us, my MO had been expecting these and has indicated that he may recommend therapy for longer than the five years we originally had planned.I I see him next month so will learn more then. Congratulations on the new job!
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I know every woman is different. I looked at Cancer Math and with Mucinous the difference taking an AI and not taking an AI on recurrence is only 1-2%. Is this true? Is it worth what the AI is doing? High Cholesterol, Osteopenia, brain fog, added aches and pains. Just wondering if I'm looking at this correctly or if I'm trying to convince myself it's ok to stop letrozole.
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livin...when I put in my stats at cancermath.net, I too, get the same figures. However, what my MO told me when he said I should "consider" taking endocrine therapy, he "recommended" it so that I would potentially avoid a second primary breast cancer. Not a recurrence of my mucinous breast cancer, but AVOID a possible SECOND breast cancer.
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So, his belief is that because we have had mucinous and it was ER+, PR+ that we are more prone to get any kind of breast cancer in the future? More so than someone who has not had cancer?
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Yes. Once you have had a breast cancer, you are always at a more increased chance of getting another breast cancer than the general population.
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Well, my dearest mucinous sisters....June brings us all good news. I've been in contact with our researcher friends at Sloan Kettering and they have been very busy! That is great news for all sisters with "rare" breast cancers! Our researcher who is designated to begin studying mucinous breast cancer has begun his work despite waiting to find out if he has been selected for the Komen grant. He submitted paperwork for the final phase of the grant application and he and his colleagues are very hopeful now that the grant funds will be realized! Nonetheless, Sloan Kettering is following through with their commitment to the lab and that should make ALL breast cancer survivors delighted. Please remember there are numerous types of rare breast cancers. Recall that even initial diagnoses of Stage IV is also rare and they are studying that too!
The researchers have also promised to keep me in the loop with respect to their findings. So, I promise, after I'm the first to know what ever it is that they tell me they know....you will all be the first people that I will tell!
😉
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This is amazing news VR!
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Thank you for keeping us so well informed VR!
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wonderful, VR!
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Thank you so very much. I appreciate all that you do for us mucinous BC sisters.
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Thanks VR!
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Livin- sent you a private message.
For what it is worth, my surgeon in Houston said when I asked if I should have my other breast removed, that with mucinous I only had about a 2% chance of getting it in the other breast. Just one surgeon's opinion-have not researched it...
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NLR, thanks for the info!
I had my oncologist visit today and told him I could stand all the aches and pains from letrozole, but I wasn't going to let it hurt my brain. Response was why did I think it was letrozole, other things can cause brain problems, such as dementia. I thought the one thing worse than cancer was dementia. Anyway, after discussion, he said I could take a month vacation and then try tamoxifen. Hope I do better with it. Also my feet were swollen, another problem I've had since letrozole came in to my life and he said I can't blame everything on letrozole. I thought, yes I can. Looking forward to the next 30 days! :-)
I ask him what was the percentage chance of getting breast cancer again and he said 25% or more for any type of breast cancer and no AI. Hmmmm.
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livin...so basically your MO said what my MO pretty much said...We're taking the endocrine therapy to reduce our chances of another primary. It's interesting that your physician quoted you a 25% chance of getting a new primary. I don't recall him mentioning that high of a number. Wondering if anybody else's physician quoted a number....Anyway....I'm glad you have a plan...hope it works and you start feeling like "yourself" again!
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VR I thought that endocrine therapy also helped to reduce the risk of distant mets. I'm not on an AI but I am on Tamoxifen.
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sun....what I was told was my risk of a second primary was greater than my ABSOLUTE risk of distance recurrence. Endocrine therapy should protect you from both.
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This may be the wrong section to posted this in, but . . . Day 2 (yesterday) of no letrozole and I believe I was having withdrawal symptoms. My muscles and brain felt so weird (not in a good way). Wasn't expecting that.
I looked it up on the internet and even though the drug information says nothing about withdrawal, others have posted they had it. Fortunately, this morning I feel fine.
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God bless all the techno people who make it possible for your latest emails to come straight into my email box so I have been busily reading all your latest emails & thinking of you women & praying for the issues that arise. As for me health seems excellent am caring for my 90 yr old stepmother and have to do cellulitis treatment 3 times a day, its eating my spare time up & my energy. So l will keep in touch from my email box. Blessings to you all, keep up your excellent work VR much appreciation Tricianne.
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Voracious - you were curious about other perecentages.....
I previously posted that with pure mucinous, my surgeon thought I had a 2% chance of another primary in the other breastn (after unilateral mastectomy) and that was the same chance for the normal population. I also found this whilst checking the numbers:
http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page1#Section_8Voracious,
Patients should continue to have regular breast physical examinations and mammography to detect either recurrence in the ipsilateral breast in those patients treated with breast-conserving surgery or a second primary cancer in the contralateral breast.[27] The risk of a primary breast cancer in the contralateral breast ranges from 3% to 10% at 10 years after diagnosis, although endocrine therapy decreases that risk.[28-31] The development of a contralateral breast cancer is associated with an increased risk of distant recurrence.[32,33]
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Hi everyone, I am new to this forum. I am so glad to have found people with the same diagnosis. I was diagnosed with infiltrating ductal carcinoma, mucinous type, after core biopsy. It is grade 1. It was 0.8cm. Strongly positive for estrogen and progesterone. Her2 negative. MIB-1 (Ki-67) was 69%. I am 42 years old. My doctors felt that it was pure. I asked them to repeat the pathology of the core biopsy because it is such a rare tumor and the repeat path came back that they had to wait for the entire tumor to know if it is truly pure or IDC with mucinous features. I've decided to do the double mastectomy but am awaiting my surgery date which is mid-August. My oncologist didn't put much stock in the high Ki-67 but the surgeon seemed concerned. I know it is a slow growing tumor, but did anyone else have such a high Ki-67? How was your treatment plan affected? I guess the doctors think I shouldn't need anything but the mastectomy if no nodes are affected. Thank you so much for all the research you all have done, and for sharing your stories!!!
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Hi Greenpastures, and welcome to Breastcancer.org. We're glad you've found us. If you haven't already, please check out our sections Symptoms and Diagnosis of Mucinous Carcinoma and Treatment of Mucinous Carcinoma. Thanks for sharing your experience with us, and please know that we're wishing you all the best.
The Mods
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Hi Greenpastures! I'm recebtly diagnosed too and we're very close in age. The only thing I can say about the Ki-67 is my hospital which is a teaching hospital doesn't even run that test due to the reliability. Have they mentioned an Oncotype being done yet? You will want to ensure that's done as well. Also the ladies here taught me to ask for copies of reports! That bit of advice has served me well.
There will be others along soon. Sorry you have to be here with us!
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Hi Greenpastures! "cheers" to the club we all wish we didn't have to belong. I am a little over a year out from DX, I knew of the one lump, so I opted for BMX because of my family history. Lost my mother when she was 50. So, to me, it was a gimme. Ok, let's do this!
Well, I find out all the path, and my Onc has a meeting with all the other cancer-specific specialists, because it turns out I had 3 different cancers. And the one that had her attention from the get-go was the mucinous one. Considering it grade3, and invasion into dermis, she decides that for me, the- bmx, *check,- radiation; *N/A, -chemo, *check, x4 .
Had OncoType done a bit later, it was a 14. Not low, not high, not much. And followed that with the BRCA testing. It came back BRCA2+. I decided because of the behavior of the cells and at my Oncs request, to go forward with chemo.
I am still learning about the specifics of it all. Some days if I had my 'druthers... I'druther not dig up too much info. too quickly. I guess I am still trying to wrap my head around all this %$@&.
Just thankful that at least it seems to be the right decision for me, because I just had my 1yr cancerversary! Don't get me wrong, I have had my share of SE's and it aint pretty, *wink, but at least in like my mother who at 49, was gone at 50. I have surpassed that! Sheesh! I'll take it!
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