Mucinous Carcinoma of the breast
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I have also just received pathology back from my dbl mastectomy, and the path on the left side is triple positive, mucinous carcinoma (don't see anything indicating pure or mixed). Based on what I can find, it seems the HER2+ aspect is very unusual. I'm wondering about asking to have the tissue rechecked. Anyone have experience with that? Also wonder what others in this situation were recommended treatment-wise and what you did?0 -
ives...yes! Triple positive mucinous is rare. However, we have had a few sisters here with that presentation. Many of us also had second opinion pathology report.
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lysmom-I too had mucinous adenocarcinoma with pathology report from biopsy stating triple positive. My biopsy didn't have the mucinous diagnosis, but rather said IDC with mucinous and micropapillary features. My final pathology report from mastectomy said mucinous adenocarcinoma. I asked about rechecking the Her+ status and was told by Mayo who checked it the first time that they don't recheck it again. Mayo did recheck the diagnosis and concur with the mucinous diagnosis. I had neoadjuvant chemo because of the Her + status and the size of my tumor (big at 8.4cm). I now am on Herceptin every 3 weeks and tamoxifen daily.0 -
Ivsmom-there is a triple positive group too under the HER2 group that you might find helpful.0 -
I have "pure Mucinous Carcinoma" and I am also trying to get info on this type of cancer. 1-6% of IDC. Had core BX on 3/19 and lumpectomy on 4/7. My pathology results were the same and ER+ 100% with Progesterone 50% and SNB 0/1.
Just starting this "journey" like you are. I don't meet with Medical Oncology until May 18th and Radiology Oncology until May 22nd.
Sounds like this is rare but also good prognosis with usually no spread to lymph nodes.
Hardest part I have found is the wait for results! Also I am so very tired all the time! I am 69. This used to be a type of IDC found in older women, 60+
I am hoping to fill in the pieces when I meet with Oncology. Asked for the Oncotype DX to be done on the tissue from my surgical biopsy. Oncotype DX of 8. 1st Medical Oncology appt doctor thinks less is best for my age. Avoid Rads & start on AI. Getting 2nd opinion with another MO & still awaiting appt on May 22nd with RO.
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nurse...sorry to hear you are joining us....just want to clarify that when one tests positive for HER 2....they are NOT a candidate for the OncotypeDX DX test.
Keep us posted with your journey. Once you have a treatment plan in place, you should begin to feel better!
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Yesterday was the 1 year anniversary of my surgery to remove my cancer.
I think had it not been for this specific thread and VR for her posting of mucinous information, I would have lost my mind while waiting for the oconotype test, radiation etc. the hardest part is the waiting.
I've actually been moved now to yearly diagnostic screenings, I see my oncologist every four months now, my breast surgeon yearly and radiation oncologist every six months. Life has became more normal than I ever thought it would at this time last year.
To those ladies just starting this journey, there's a light at the end of the tunnel and it shines brightly. You'll be surprised at how much this journey will change you and your outlook on life.
Good luck to each of you.0 -
Thanks sun! I'm so happy to hear that you are doing well!!!
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Hello Lvsmom, Sorry to hear your diagnosis, but glad you found your way here for support and resources!
I was also diagnosed with mucinous carcinoma with Her2+. My onc agreed to have another hospital recheck my tissue for both the type and for Her2, after I gave him the information from the NCCN site that recommended a HER2 result should be rechecked. (since it basically didn't exist with mucinous and NCCN had no recommendations for treatment) The second results came back the same, however, even before those results my onc contacted the top bc oncologist in Canada to discuss treatment. Initial treatment that had been recommended was very aggressive but that was changed by the top bc onc to less aggressive (removing one type of chemical in the chemo regime, however, I don't remember which it was) To me, it was well worth asking the questions.
My treatment protocol is in my signature. It's been over 3 years since I was diagnosed and I am very well. Sure, the hormonal therapy continues to play a little havoc, but really alls well. If there's anything else I can help you with, let me know. Being part of this group, and especially with Voracious Reader's contribution and connections, makes me feel like 'somebody's got my back' ~smile~ It really is good you found your way here.
Love and good wishes to you, and to all my sisters here. And to you, VR, for all that you continue to do.
ps. oh, i see my signature isn't complete... will go check on that and repost an updated version0 -
Looks like my full treatment protocol just doesn't want to show up in signature. My hormonal therapies have included tamoxifen - almost 2 years. A change in brands caused many side effects, so we moved sooner to the next step in protocol - Femara, which I also reacted badly to. Now on Aromasin and it is do-able.
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Feeling! Thank you as well! Meanwhile, I had been walking around for the last year or two believing that making the switch from Tamoxifen to an aromatase inhibitor was wreaking havoc on my bones and joints. I had switched to an AI because I became post menopausal AND I had a history of uterine polyps both before my diagnosis as well as after! Well....I'm now three years into taking an AI and I still get bloody polyps AND what I thought was joint pain due to the AI, is actually referred pain coming from my back! VR can sometimes really be a moron! 😱
I knew I had a back issue because every few years I get an acute episode of sciatica. What I hadn't realized was that there is also a thing known as chronic sciatica which might not be as severe as acute sciatica! My foot doctor was the one who figured it out and sent me to a neurologist who confirmed his diagnosis. I'm now feeling the best I have ever felt in years! 💞💞💞💞💞
Moral of the story, keep your physicians informed of your symptoms. Sometimes what we might think is a side effect from a medication might actually be something else.
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Hello everyone. I am new to this forum or to any forum. Let me introduce myself. I am 39 yrs old with 3 kids (15, 11, and 9 yrs old). I was dx with mucinous carcinoma in March, had b/l mastectomy April 2nd and had tissue expanders placed immediately after.
I was told this cancer is rare and happens more often in women of menopausal age or around 60yrs old. I am neither of those, so how did I get it? I have no family hx of cancer and I am still waiting for my genetic testing to come back.
Are there more and more younger people getting dx with this cancer? What should I be aware of this disease process?
My oncologist said 75% of people dx with this, survive 10yrs after. What about the other 25%? I feel that with my luck, I won't survive to see my youngest daughter turn 18yrs old. My husband has been optimistic and keeping me sane. I still cant say or write cancer without getting teary-eyed.
I am so thankful to have found this site for some knowledge and support.
Thank you for reading.
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mared...I'm sorry to hear about your diagnosis but happy you found us. I'm not sure where your physician got those percentages. Perhaps you can tell us more about your tumor's characteristics. For many of us, we have been told that our type of cancer carries a favorable prognosis and for those who have less than favorable prognostics, it is a very treatable disease. Remember that! Breast cancer, for many of us has become a very treatable disease.
You are early on this journey. Please take time reading this thread and you will see that many of us were diagnosed at a young age and we are doing well.
I wish you well!
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Hi Mared, I was 44 at diagnosis and told that if I were going to have breast cancer then my mucinous while rare had a very good prognosis.
Have you been given your HER status and have they completed the oncotype testing on your tumor?
I really thought I'd lose my mind in the early days but I'm now a year out and doing very well.
You've came to the right place for support and information. I can only suggest that you read this thread, it saved my sanity!0 -
Mared4-I was 43 at time of diagnosis (married with 16, 14, and 11 year old). No risk factors other than dense breasts. I was active and ate fairly well and had adopted a fairly green lifestyle before my diagnosis. I chalk up getting BC to bad luck, and maybe having a genetic predisposition yet to be determined. My genetics testing was negative.0 -
voraciousreader: my pathology report said no dcis is present no lcis identified, margins negative, no lymph node involvement, stage 1. The estrogen and progesterone test was done but not included in my pathology result. I am still waiting for my oncotest and genetics to come back.
Voraciousreader, Sunshineinky and chrissie29: THANK YOU ladies for your responses. Wishing everyone well.
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mared.....if you are waiting for the OncotypeDX results, then you are ER+ and HER2 negative. Those are very good characteristics. Contact your doctor and ask them for the final surgical pathology report. It should include that information. While you are waiting for results, please read the NCCN breast cancer guidelines found on the NCCN's website. Be sure to read the professional version (red logo). Also, familiarize yourself with the SOFT and TEXT breast cancer trial.
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voraciousreader : thank you. You have been a wealth of information. I will let you know once the rest of my tests comes back, hopefully in the next wk.
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I remember the day the radiologist who had done my breast biopsy called to tell me it was cancer. She said it was mucinous and that it was a "good" cancer. I remember thinking what an oxymoron!
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I haven't found it to be a "good" cancer since my dx with stage IV mucinous bc with mets to the pleura over four years ago. For a while I thought that maybe it was more indolent than average, but since December 2014 it has progressed to my right scapula and in April 2015 to my skull and liver. Biopsies of the pleural and bone mets both showed mucinous bc mets. I do hope Xeloda will convince all those busy little cancer cells to go back to sleep.
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carpe diem: I am sorry about your mets. Wishing you well.
Hope you don't mind me asking why your mucinous got this bad?
Take care.
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Mared....that is a good question. However, presently, there is no answer.
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mared,
At least part of the problem was that the breast tumors never showed up on mammograms. Once I could feel a blob, ultrasound was done as well, but it still looked like normal breast tissue. When I started having pleural effusions, tests on the fluid removed showed no cancer cells, or anything else, and since I'd gotten an all-clear no one even wanted to consider that it could be related to bc until my nipple inverted and a mammogram showed some abnormal structures that turned out to be mutinous carcinoma. Why it metastasized is unknown, but I seem to have a genetic predisposition to cancer, having previously had endometrial cancer and bladder cancer twice, and my older sister has also had three cancers. I've been extensively tested (PTEN, P53, and recently FoundationOne testing for a slew of mutations including BRCA1 and BRCA2 with mostly negative results.
There are no obvious environmental carcinogens in my background except for the years I spent in chem labs, but my graduate work was in physical chemistry and didn't involve a lot of exposure to chemicals, and my sister didn't have even that. My parents and three brothers were/are cancer free except for the occasional skin lesion you expect in amateur golfers. I tend to believe there's a genetic component, but it all comes down to Nature is capricious and absurd.
I'm not impressed with the diagnostic abilities of my first set of doctors, but when you consider that I'd had numerous CT scans and ultrasounds for my other conditions and no one ever found the breast cancer that must have been growing all along, I guess my luck just ran out on this one.
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VR! How did going to a neurologist relieve your pain? Curious because I max out my PT visits each year since I was diagnosed and I have a great PT. Because of all my treatment plus ovarian suppression and AI, I figure the pain and fatigue are pretty much just collateral damage. And I tell my docs but it's so subjective
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cider.....most of my pain was localized to the left side of my body. I was previously diagnosed with neurodermatitis affecting my back and ear canal. My ear itched so much, I got two ear drum perforations! I was given a low dose of an antidepressant and my itching improved. When I returned to the neurologist for the left side body pain, he had me increase the antidepressant. I'm still taking below a therapeutic dose that one would receive had they been depressed. I am still in a state of shock that I'm feeling as well as I am! Beforehand, I couldn't put blankets on my feet, nor could I walk barefoot. I also racked my brains out trying to find a new car, because it hurt so much to get in and out of a car. I ended up with a Subaru Outback! I also have a closet full of hardcore orthopedic shoes. I live in Durea, Waldlaufer, Wolky, Dansko, Mephisto and Josef Siebel shoes.
If you are uncomfortable, speak up! If your doctors can't get the message that you are in pain, then SHOUT....POLITELY! None of us needs to suffer!😇
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Carpe Diem-I can relate to the mammogram and US not finding the cancer. I had mammogram in December-normal, felt lump in Feb-saw MD and had mammo and US in March-normal. Denied MRI because no family history of BC. Follow-up in July-mammo and US still look pretty normal (MRI denied again) but thankfully radiologist who specialized in breast diagnostics, thought there was maybe something visible on US that she could do a biopsy on. She took many samples and thought she would find at most DCIS and was surprised to find cancer.- Surgeon appealed MRI decision with new diagnosis and cancer turned out to be an 8.4 cm tumor that was only a mm from my pectoralis muscle-separated by fat pad!
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very interesting and very different from my pain. I'm so glad you feel better.
I got fitted with some Brooks shoes so I could up my walking. I'M trying to get 3 miles in daily since I have to do my first 5K with my 11yo daughter doing Girls On The Run! So sore and even more stiff and achey! I am in the midst of trying to treat my mild sleep apnea. I'm hoping for more restorative sleep so I have less fatigue so I keep my exercise/stretching act together.
Time to get back to PT I guess. I get sick of appointments even though I feel better. Did I mention I also max my chiropractor visits and OT (for lymphedema) visits, too! Blergh!
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Proper fitting shoes are important! I walk 3 miles every day! If I don't walk, I get very stiff. I am not fond of sneakers. That said, Brooks is a very good brand. My feet are so sensitive that the tongue's seam and laces hurt my feet. I wear sandals with Velcro and seamless socks. Most of my shoes have adaptable insoles made of cork or memory foam.
Regarding mammography...it missed my tumor and my cousin 's too. With respect to what makes one tumor worse than another, besides looking at the cells genetics, researchers at Sloan Kettering told me that the cancer cells "speak" to the surrounding cells. They haven't quite figured out yet exactly what the process is, however, they are getting closer to understanding how metastasis occurs....
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Just an update: I saw my oncologist today and was told that I have an oncotype dx score of 12. According to him its a median of the lower score and I only have to take tamoxifen once a day for the next 5-10yrs. Thank goodness NO chemo.YAY! He also told me that likelihood of recurrence is about 8% or even lower once I start taking tamoxifen.
Have a great day everyone.
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