Mucinous Carcinoma of the breast
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ade...you are no longer alone! At the touch of a click, you can find us!
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Hi everyone, so glad to find fellow MC sisters to talk to. I was diagnosed at age 53. Stage 1, 9 mm with clear nodes in 2014. I had a lumpectomy followed by radiation. I was on tamoxifen for two years when I had to have 2 polyps removed from my uterus. Was taken off tamoxifen and started anastrozole. After a few weeks I woke up with terrible pain in my elbows, wrists, hips and knees so I stopped taking it that day. I made the decision not to take any estrogen inhibitor. If mucinous carcinomas have a low % to metastasize or reoccur has anyone else made the decision not to take the inhibitors? I'm starting to question my decision. I am physically feeling much better. Best wishes to everyone!
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hi Roxy! Perhaps you might reconsider doing the Tamoxifen. I had uterine polyps BEFORE my diagnosis at the same age as you. While taking the Tamoxifen, I continued to get polyps, again and again and again. When I became menopausal after two years of Tamoxifen and ovarian suppression, I switched to letrozole AND continued getinginpolyps again and again and again. i must have had 9 D&C's in less than 5 years. I seriously considered a hystorectomy, but was talked out of it by several doctors. Glad I didn't go through with it because my uterus FINALLY quieted down and it is finally behaving itself! Two years now of peace and quiet.
So....while Tamoxifen might cause polyps, it might not be the sole reason for their growth.
Answering your question, I hooe you will bear one thing in mind. Endocrine therapy, for those who have already had a breast cancer, will reduce the chances of a NEW primary diagnosis. So, only you can decide whether or not continuing treatment is the right choice for youself. My doctor told me that I can stop treatment if I want to, but he thought that since I have few side effects, his recommendation was that I continue so I can avoid a second cancer. So for now, I continue.
Good luck! I wish you well
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Thank you voraciousreader,
My oncologist told me I am in menopause now, so it was time to stop the tamoxifen. Did not like the side effects of anastrozole at all. There is another inhibitor I could take but fearful of getting the same painful side effects. Not sure what to do.
I appreciate your response to my post. ☺
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roxy...i am not sure just because you are menopausal that you need to take an aromatase inhibitor instead of Tamoxifen. My oncologist offered me 5 years of Tamoxifen if I wanted it. I just thought that switching to the AI would quiet the polyps....which obviously it didn't. I would recommend talking to your gyno as well. While an AI might give you an absolute benefit over Tamoxifen of approximate 3%, I don't think there is a written rule that says you MUST switch to an AI once you are menopausal. I know that D&Cs are no picnic and they do come with risks, but my physicians didn't think it was THAT big of a deal as long as I was willing to have thwm. i know 9 D&Cs is a lot, but I wanted to hang on to my organs...In retrospect it was the right choice for me...I hooe you have better luck with your next AI..
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roxy---I'm now menopausal thanks to a total hysterectomy and am still on Tamoxifen. My MO and BS both said my benefit would be somewhere around 2.8% if I swapped to an AI and they didn't think it was worth it. I do pretty good on Tamoxifen and have found ways to manage any bothersome SEs. I don't have my reproductive organs so I don't have to worry (too much!) about that type of cancer from Tamoxifen. And they other big SE is blood clots and my docs both feel that fish oil and baby aspirin along with lots of movement will pretty much keep those at bay. If you are doing well on Tamoxifen ask about staying on it. That is much better than swapping to an AI, having all sorts of bad SEs and then not taking anything at all.
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Hello,
I am a longtime reader of this thread, but this is the first time I'm posting. Three yrs ago, at the age of 47, I was dx with Mucinous BC. I was treated with Surgery, Radiation and Tamoxifen. 10 years ago, my mom was dx with DCIS/IDC. Now, at the age of 83, she has been Dx with Mucinous BC as well. I'm wondering if Mucinous BC is hereditary, or are we just lucky?
Also, thanks to VR for all of the very valuable info that you have passed along over he last few years, it is really helpful
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Mom...welcome! Sorry that you are joining us. Regarding your mom and you having mucinous breast cancer, I have NEVER come across a link. I woukd strongly recommend that you contact the rare breast cancer research department at Sloan Kettering. I am sure they would like to see your mother's and your tumor specimens. Perhaps they can shed some light. I wouldn't be surprised if they write a journal article on your cases. Please keep in touch and I wish both of you well...
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Hi all
I went for a follow up of two lymph nodes in my neck with 'worrying features 'on ultrasound. They were only tiny but they managed to do an fna biopsy on one and I got a ' benign' result today. I will have another scan in 3 months to recheck but the normal result today was a relief.
It would be lovely to have been without this experience, so the trauma of the diagnosis could fade. However, it has been another reminder to go out and look at the milky way in the clear night sky .
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Glad this news was good...enjoy the star gazing... may we all enjoy life's little things and from time to time the big things and medium things too!0
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HI wobbly, glad you had good results.
Lala1 and others, it confuses me that I was told not to take tamoxifen after menopause, and you are able to stay on it. I could tolerate the tamoxifen, with mild SE. Will ask my oncologist about it. She told me in menopause you do not produce estrogen, so no tamoxifen. The exemestane blocks the synthetic estrogen your body can make. Has anyone else heard this?
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Roxy. Please talk to your team. Most physicians will recommend an aromatase inhibitor for post menopausal women because it is SLIGHTLY better at preventing a relapse and preventing a new cancer in either breast. However, Tamoxifen can also be prescribed for postmenopausalwomen.
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pardon my typing...my tablet does the weirdest stuff. I look at what I write before posting and then once it is posted, it contains typos....yuk
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roxyd---Definitely talk to your MO. Up until a few years ago, we ONLY had Tamoxifen so it didn't matter if you were pre or post menopausal. Tamoxifen is ok for all ER+ women. As far as the better odds against recurrence, it is a slightly better percentage but not for all according to my MO. He says my odds are only improved by maybe a couple of percentage points and that the real benefits are for those who had high Oncotype scores or positive lymph nodes. I had neither so he and my BS are both very comfortable with my being postmeno (surgically induced) and taking Tamoxifen.
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Thank you lala1,
My oncologist said we know that the tamoxifen did affect my optic nerve, and the polyps it was time to switch. I will try the exemestane, hopefully will not have the bad side effects. But she is fine with me not taking anything if it does cause severe joint pain. They are glad I got 2 years of tamoxifen in. This site mentioned some doctors feel no estrogen inhibitor is needed if; stage one, under 1cm, clear nodes and had radiation. That is me. Hence my confusion
Thanks again.
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Now that I've got all my puzzle pieces together, I've decided to join the group. My tumor was 4.9 cm and so close to my chest wall, they removed all tissue all the way back to my muscle during lumpectomy. My Surgeon favors Radiation due to the size of my tumor & proximity to chest wall. However my Medical Oncologist leans more against Radiation for me due to well defined clean/clear margins, negative genetic test, family history and overall health. I will resume Tamoxifen once it is either decided that Radiation will not be done or treatment is completed. I have an appointment with the Radiation Specialist next week. I know it will ultimately be my decision as to whether or not I will do this treatment. I read UnBreakable's post about recurrence after not doing Radiation Treatment. I'm worried I will make the wrong decision. I would like to know some of your thoughts...
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i would recommend that your MO present your case to a tumor board. My tumor was close to the chest wall and that tipped the treatment recommendation towards having radiation. I often wonder how much treatment is appropriate for each individual. I don't think there is a right or wrong answer. I think we have standards of care that are used as a benchmark to begin the discussion of what is appropriate for the average person. Unfortunately, individuals are not averages. So, talk to your team and sask for a tumor board review. Remember, you are going to make a decision based on the best available evidence for your situation TODAY. Keep in mind, based on develping evidence, recommendations do change over time....it is like trying to hit a moving target..
Good luck
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SoccerMom, Roxy, etc..... Welcome! Sorry you found yourself here with our gang. Ladies, so very sorry your tumors were found near the chest wall. Please obtain valuable 2nd & 3rd opinions on mucinous carcinoma dx, remembering that imaging (MRI, Mammo, etc.) did not identify 38% of multi-centric MC lesions. (Ref VR former post re: M.C. Anderson MC study -- link below). I shall remember you ALL in prayer.
Site of Primary Tumor Has a Prognostic Role in Operable Breast Cancer: The International Breast Cancer Study Group Experience
http://ascopubs.org/doi/full/10.1200/jco.2005.06.0...
http://ascopubs.org/doi/pdfdirect/10.1200/JCO.2005... (pdf download)
INFLUENCE OF TUMOR LOCATION ON BREAST CANCER PROGNOSIS
http://onlinelibrary.wiley.com/doi/10.1002/ijc.111...
Prognostic and Predictive Factors in Early-Stage Breast Cancer
http://theoncologist.alphamedpress.org/content/9/6...
http://theoncologist.alphamedpress.org/content/9/6... (pdf download)
Tumour location within the breast: Does tumour site have prognostic ability?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC45311...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC45311...
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Location of the Tumor
The location of the tumor is a major factor in outlook:
- If the cancer is ductal carcinoma in situ (DCIS) or has not spread to the lymph nodes (node negative), the 5-year survival rates with treatment are up to 98%.
- If the cancer has spread to the lymph nodes or beyond the primary tumor site (node positive), the 5-year survival rate is about 84%.
- If the cancer has spread (metastasized) to other sites (most often the lung, liver, and bone), the average 5-year survival rate is 27%. New drug therapies, particularly aromatase inhibitors, have helped prolong survival for women with metastatic (stage IV) cancer.
The location of the tumor within the breast is an important predictor. Tumors that develop toward the outside of the breast tend to be less serious than those that occur more toward the middle of the breast.
http://www.nytimes.com/health/guides/disease/breas...
PLEASE keep in mind that articles linked herein are usually based on "conventional" BC ( IDC-nos, ILC, DCIS, etc) and not specifically based on exotic BC's, such as our mucinous carcinoma.
Wednesday, July 12, 2017
http://www.nytimes.com/health/guides/disease/breas...
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*** New study questions true favorability of rare breast cancer type ***
https://www.sciencedaily.com/releases/2009/12/0912...
*** Ref: MC Anderson study on Mucinous
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Leaping in on the tamoxifen/a.i. inhibitors discussion. My onc recommended tamoxifen for 3 years (I'm post- menopause), and an aromatase inhibitor for 2. My understanding is that you can use tamoxifen post menopausal. You cannot use aromatase inhibitors pre- menopausal.
I managed the tamoxifen somewhat unhappily especially while I was on herception treatments after chemo. (my diagnosis was the strange mucinous with her2+) but settled into it UNTIL they changed the brand 6 months before I was meant to finish it . Turns out many woman had trouble with a certain brand, but rather than try another brand again, they started me on the next phase: Arimidex. I lasted a month with pain and unsettling side effects. I took a 6 week break and tried exemestane and have been on it for 1 3/4 years, with a couple of 4 week breaks. I do have fairly serious neck and knee issues, but we are not certain exemestane is to blame. Have been waiting for a bone density test and if it shows a major change from when I started, I will stop. Otherwise, exemestane has been okay. The breaks didn't seem to make a difference to how I was feeling (joints), so I hang in on these treatments mostly because my diagnosis was very rare and there's really no statistics to say how much these treatments make a difference. So, my point is you can always try the different options and change if the side effects are too bad. You can also take breaks and see how that goes. As well, you can ask for different brands - because that can make a difference.
Meanwhile, good wishes to all of of us who have or have had this 'exotic' cancer. I giggled at that term in the previous post. Not exactly the 'exotic' I was hoping for in this life. ~smile~0 -
feeling...keep us posted and let us how you are doing...i think when we post our side effects, it is a good idea to give us occasional shout outs that tell us what is working...as well as what isn't working. Coincidentally, I had my bone density test today. At my last test, I was kind of surprised that I had done better than the one before that...interestingly, my bone improved when I switched to letrozole...
Speaking of exotic....I was diagnosed this week with another rare disorder...Ehlers-Danlos...it is so much fun to have these exotic illnesses...i think I am in competition with the DH who has an extremely rare disorder that it makes mucinous breast cancer seem common...😱
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Voracious, good to know letrozole improved bone density. One thing I'm learning is not to base any decision on what is the general response to a drug. Truth is we all seem to respond quite individually - part of my reason for at least trying out the options.
But, Voracious! What? Another rare diagnosis? I'm sorry to hear. I did look up Ehlers-Danlos - I do hope you are not in too much pain with it. Meanwhile, you and your husband have quite a story, and you do have a lot of knowledge and you are inspiring - I keep imagining a book? Is that something that interests you? Or maybe you've even already done that?0 -
on the contrary...letrozole is supposed to be hard on the bones and joints....i was pleasantly surprised that my density improved..
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a book? Not sure if it would be placed in the fiction or non-fiction section..
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Oh, that's what I meant. I know it's supposed to be hard on bones, so it is a nice surprise to hear otherwise. That's why I say it's wise to give things a try because we all seem to respond individually. I'm hoping for a good bone density result even more now.
Your book could be in the "Wild Memoir" section.0 -
here is what I learned....since early adulthood, i kept having orthopedic issues and other serious medical conditions including a pneumothorax... but i think the reason why my illness was delayed in being diagnosed is that none of the doctors nor I made any connections...I just thought I was unlucky. Now that I know what I have, I have read that lots of people who have the disorder also had the same frame of mind, that they were unlucky...
Interestingly, I finally put some of the pieces together and had my dermatologist do a biopsy of my skin and it came back suggesting a connective tissue disorder that led me to a rheumatologist who should have figured it out but didn't...soooo....not one to give up, I approached the DH's medical geneticist and in 5 minutes she figured it out. A local medical geneticist confirmed it.
The bottom line is that as Lisa Sanders, MD (NY Times Medical Writer and consultant to the show House) says, "Every patient tells as story." She wrote a column about my husband and how he was diagnosed. And, what stayed with me was that often doctors follow Occam's Razor and so did I! I let the doctors box my symptoms into a simple narrative that made sense to them. Each time they told me what happened was due to congenital defects. I once thought I was born very defective. But, as the years hurled by, I could no longer dismiss all of my orthopedic issues to defects and bad luck. The narrative needed to be rebooted...
And so, here I am...the proud recipient of not one, but two rare disorders! Still life is good! And pain? Not so much! I have been on a sweet cocktail of meds for a few years now. I once hoped that I might one day cut back on the meds, but now I doubt that will ever happen. My quality of life is good...so why lament about how many meds I have to take...it is what it is....i am blessed
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Like I said, inspiring! A good story for others to realize how pro-active we must be in figuring out what's going on. Also, for others to find what works for them - (and guess what? That might be a sweet cocktail of meds, and nobody should be made to think that's not okay) and then use what works for them, including a good outlook like yours.
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29 yr old here diagnosed with colloid carcinoma back in April. It was a palpable mass above my right nipple. Initially ultrasound said it was 2cm, lumpectomy and pathology said It was 2.9cm. My follow up mammogram to create a baseline was negative. I Was about to start radiation when I had a MRI showing another 2.0 cm tumor inferior to the first tumor at the 10 o'clock position. I'm a small B so another's lumpectomy would not have a good cosmetic outcome, therefore mastectomy was decided. My oncotype was 18 for the first tumor where my oncologist encouraged chemo. Given the new tumor, I have a feeling she's going to push it more. My general suregon is already pushing it. I'm reading and reading to decide if I should do chemo. Never had kids though my husband a and i were planning.
Stage 2a, 0/2 lymph node
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Kelly,
I'm so sorry to hear that you are going through this. Do you have the pathology report for the second tumor? Was the first one pure mucinous carcinoma or were there some other type of cells in there? Those are the questions I would want my oncologist to answer if I were in your situation. After my mastectomy, I was told that my tumor was pure mucinous with a little DCIS so I would not need chemo. Pure invasive mucinous carcinoma rarely invades the lymph nodes. Your oncologist could also be basing some of her recommendation due to your young age. Also, do you have access to a breast specialist where you are being treated? I wish you the best!
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marathon girl,
I do not have my pathology report from the recent mastectomy yet. I have the report from the first though it doesn't specify if it's mixed or pure. It doesn't provide time the percentage. The only thing is says for invasive tumors type is colloid carcinoma. Type and pattern is cribriform. I was on tamoxifen but had to put it on hold till I meet with my oncologist in 2 weeks
Thank you for the supoort
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