Mucinous Carcinoma of the breast
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I just read your comment and I had the same experience as you did. had same kind or cancer,had the lump removed,then radiation. Just started Tamoxifen20mg. had headache and sore neck muscles at first ,but went away. now my stomach is wozzy and have a vaginal discharge, which they say is normal. taking it for 5 yrs.,seems so long to feel miserable,but what choice do we have? I would like to know if anyone that had the same kind of cancer and didnt take any medication afterwards . hadnt read about anyone yet. let me know. Feel for you all, love LINDA
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HI--I was 41 when I was diagnosed--mucinous carcinoma--HER Positive. I had an initial biopsy--positive that lead to surgical consult--loss of right breast--Mastectomy. Initally --given the cancer is "rare" and I was on the younger side--I was told no chemo or radiation--but they would be checking the nodes as part of the mastectomy. I considered myself extremely lucky. I had the mastectomy and the sentinal nodes biopsy ---Bad news--found in my nodes--for a cancer that is slow moving--mine was fast. They got the nodes out and rated me at a 3A. So it was Chemo for sure--I fought the radiation--initially--I think I just wanted a say in my treatement. I have a 14 year old (13 at that time) that I just had to do everything I could. The chemo wasn't fun for me --I did do the additional study for Avastin--at the same time as standard chemo--made the side effect horrible--but again--if it bought me extra time--that is good. It does also degrade the skin that is left. I did then go for radiation--which was 34 treatements (didn't like radiologist--kept adding in extra treatements). Am now on Tomoxifin--and am going to be 43 in May. The tomoxifin isn't bad--chemo put me in menopause--but I am happy about that. I do get hot flashes--and the heat bothers me more than before. I do wonder about how they do the cancer diagnosis --of it coming back--it is odd that they base this on symptoms and no routine screens (except mamogram). Love to read this board.
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I was diagnosed with Mucinous Carcinoma and DCIS in Jan 10. My tumor was 5.5 cm and unfortunately lymph node involvement was found. I just finished 3 months of weekly Taxol and had my first A/C yesterday (once every 3 weeks for 4 tx). I have surgery scheduled in August followed by rads. My tumor and lymph nodes have decreased by almost 50% with the Taxol, so I am pleased with the results so far. Sending healing thought and prayers to you all.
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Bambaloos--what type of surgery? Mastectomy? If so I can send some hint on how to make it easier.
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I have not had surgery yet - I have gone through 3 months of Taxol (12 x weekly) then 3 months of A/C (4 x 3 weeks)- just had #1 last Monday
then surgery. My tumor was 5.5 cm so they are trying to reduce the size before surgery. I have lymph node involvement, so pretty sure it will be a Mastectomy. I have an appointment with the surgeon at the end of the month - so will let you know what happens. 0 -
The mastecomy isn't as bad as I expected--and they toss you out of the hospital after 23 hours--with a drip bag. (scared my husband more than me) If this is the surgery--get a sports bra--and BIG shirts (button ups work well)--really hard to get anything on --when arm won't move. Do ask about exercising that arm --how long after surgery--it can freeze up--and the exercises are pretty simple--but necessary. I got my expander put in --at the same time and had radiation after. You will have a loss of feeling in your arm--though is only a big deal when it itches:))) Let me know when you start rads--there are certain body creams that help. I am going in tommorrow to see if the radiation affects my reconstruction--there is not telling. I do know the skin CANNOT be expanded anymore. I took another kind of chemo--though mine was pure mucinous carcinoma. Good luck--I will be thinking about you.
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Thank you so much for the tips - I will certainly let you know when I get closer to surgery - probably AUG or SEPT. I was told to leave recon until after rads as it could possibly effect the recon/skin area. I wish you all the best of luck and will be in touch, thinking about you too! Mandy
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i had a lumpectomy for 3.5 cm muscinous carcinoma on 9/9/09. i was told that i definately needed radiation and tamoxifin and maybe chemo but never followed up. 7 months later, last week, I had the full battery of mammographies & ultrasound which was negative. i have an appointment to see the oncoligist next week because I need to hear what they think. I do not plan on tamoxifin, chemo or radiation at this point.
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Hi Karen,
I'm glad to hear your mammo and ultrasound were negative last week! How did you decide not to do chemo/Tamox/radiation? And are there alternative therapies you are doing instead?
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I WAS RESPONDING TO SOMEONE ASKING IF ANYONE OF US HAD OPTED OUT OF ANY OF THE CONVENTIONAL TREATMENT. I'LL BE GLAD TO SHARE MY THOUGHTS & ACTIONS BUT THIS DOESN'T SEEM TO BE AN APPROPRIATE FORUM. YOU OR ANYONE CAN EMAIL ME AT KJOSSWALD@AMERITECH.NET.
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Wow. Finally a small place to, fortunately/unfortunately? (ha ha) call home. I too have mucinous carcinoma, need to find out "pure or mixed" yet. I am 40 in a couple of weeks and have already had chemo (it was resistant, shaken and messed with, but not destroyed) and double mastectomy. Found out after surgery that I have lymph node involvement all the way up to under and around my right collarbone. I figure I've been growing this for at least the last 5 years. Fun. I have surgery again in a week to remove those nodes as well. I was scanned for tumors elsewhere and so far all seems clear. I am also dismayed at the lack of info on mucinous tumors as well. And, yes, all mucious carcinomas of the body seem to be chemo resistant. I am going to have radiation as well for avoiding a re-occurance and then definitely do some estrogen removal, ie. tamoxifen or ovaries out, for follow up care as I have read that that alone can shrink tumors and I wish to avoid/kill off any cells that may be elsewhere from growing and hopefully would also die off with hormonal removal.
I have been also trying to study mucin in general and was interested in Ralli's idea of mucin issues. I don't have any obvious ones now, but as a kid I did have repeat ear infections big time. And, I read mucin is produced by Calcium/Sodium exchange in cells. I have had problems with electrolyte imbalances and wonder if our endocrine systems also are out of whack to help cause the mucin type?? As well as certain diets can be more prone to causing or removing mucous production as well, which may or may not factor into mucinous cancer cells, but I wouldn't completely discount the idea either.
All the best to everyone in this blog, as I've only yet gotten to skim it this evening as it is late and I need sleep. Thanks for reading.
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I just recently dx Mucinous Carcinoma, all the drs told me that I was benign, till I asked the BS to remove it. 2.5cm... the biopsy report came back Mucinous Carcinoma. couldnt believe my ears.. It happened on June 14th... I checked in MD Anderson, the BS told me she would either do lumpestomy + radiation or mast... I dont want to do mast. but I also dont want to have rads.. I am so miserable now...
Can I take Lumpestomy WITHOUT rads?? anyone has any ideas? there are so little info about this type of cancer!! PLEASE HELP!
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lfc, so sorry to hear of your recent dx! I'm glad you've found us, though.
That's great that you're at MD Anderson - you're in good hands!
Seven months ago, there was an article published about a study of mucinous carcinoma, conducted by researchers at MD Anderson. Here's the link - http://insciences.org/article.php?article_id=7922
The summary of the study is that mucinous carcinoma may not be as "great" as we've thought, and there is a risk of being undertreated. The study found that radiation is important/effective for women who had mucinous tumors. You CAN do a lumpectomy without radiation, in the sense that your body is your body and you have the right to do what you want regardless of the doctors' advice. But personally, I would advise you to do the radiation, if you choose lumpectomy instead of mastectomy. I finished radiation 2 months ago for my mucinous tumor (and DCIS), and I will admit that I totally hated radiation, but I healed well from it and I'm now glad that I did it.
One of the study's authors says, "...it's imperative that...patients receive their treatment based on actual presentation rather than the assumption that this [mucinous carcinoma] is always a favorable disease."
I think it's an important point to consider. There may not be a ton of information about mucinous carcinoma, because it's so rare, but what you can do is get as much information as possible about what, specifically, is going on in YOUR breast/body and make an informed decision that way. What scans have you had so far? e.g. mammogram, ultrasound, MRI?
What procedures have you been through so far? I'm a little confused by you saying you had a biopsy to remove a 2.5 cm tumor - typically, a biospy needle takes a sample of a breast lump to test it and see if it is malignant, and then it is the lumpectomy (or mastectomy) that removes the whole lump. Did you have just the diagnostic/needle biopsy so far, or an excisional biopsy that removed the whole lump and cleared the margins? Do you know anything about your lymph nodes yet?
Once the whole tumor is out, your full pathology report will be available and will give more information about what's going on in your breast and whether your lymph nodes are clear or not. That will help you decide upon which additional treatments you feel you need, taking into consideration the advice of a medical oncologist and possibly radiation oncologist. Ask if the Oncotype dx test is appropriate/helpful in your situation.
My advice would be to start with the lumpectomy (if you haven't yet had it?). Then once that tissue is analyzed and you have your full pathology report with more information, you can spend some time researching your options, talking with your BS and oncologist, etc., to decide whether or not you need and can accept radiation. At that point, you can go for the mastectomy if you choose not to have radiation. Whereas if you go for the mastectomy now, you can't undo that decision. Does that make sense? Ask your surgeon if this plan would work. It's what worked for me - I had the lumpectomy even though I was really resistant to the idea of radiation, because I at least wanted the tumor out ASAP. The margins weren't clear and I had to go in for 2 reexcision surgeries, and I spent several weeks agonizing over the decision of whether to do the reexcisions then move on to radiation, or just get a mastectomy... each time, my BS suggested I go ahead with the reexcision(s), because I could still choose mastectomy later on down the road if I wanted to. But I know all surgeons/hospitals/insurance companies are different, so ask!
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IFC - Raili has made some excellent points. I saw your question on another thread asking whether or not radiation was necessary because, I think, you aren't sure whether or not it will help with your long term survival. While radiation is often deferred in women OVER 70, it is still the standard of care along with lumpectomy for women UNDER 70. Whether or not you want the standard of care is ultimately your decision. However, the study that Raili links is an important one regarding mucinous breast cancer.
I also was diagnosed with mucinous breast cancer in February of 2010 and was surprised at the dearth of information regarding this rare cancer.
Without repeating what Raili mentioned, I want to include that while I also had the Oncotype DX test to see whether or not I was a candidate for chemo, please note that the test hasn't been validated for our type of cancer. I did find that the average Oncotype DX score for Mucinous breast cancer was 16.6 which translates into low chance of recurrence and that chemo would not be of benefit. Scores ranged from a low of 3 to as high as 60.
I also found that with this type of rare cancer, it is IMPERATIVE that the pathology report be accurate. You must find out whether or not it IS mucinous and if it is "pure" or "mixed." "Pure" has a more favorable outcome.
Good luck and my prayers and thoughts are with you and all of my breast cancer sisters.
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THANK YOU RAILI and Voraciousreader . I really appreciate your responses.
I dx with Mucinous carcinoma on June 14th, a week after my BS removed the lump 2.5cm assuming it was a fibrodenoma. therefore my margin was not cleared yet. the report came back cancer!! I was SHOCKED and SAD! I dont have family history, never smoke nor drink. After I got the report I immiediately registered with MD Anderson ( Thanks to my husband's friend, who referred me ) the 2nd opinion from MDA is also Mucinous Carcinoma. Now I am torn between lumpestomy +radiation +SNB vs.mastestomy. My doctor said it was my own decision. I talked to the nurse of the doctor that I dont want radiation, she said " we would not recommend lumpestomy unless you are willing to do radiation therapy"
I find there are really limit infomation about this type of cancer. and I hate to take radiation which might cause new cancer in the future or heart problem. I prayed so many times. Got an email from a friend of mine who referred me to MDA also got BC last year. she said, Trust the doctor and trust GOD... I guess the reason I was miserable was because I tried to do things my way... but if it were NOT GOD's will, it is miserable.. I guess I will just follow the instruction from doctor and Let GOD decide my future...
I DO WISH we could find our voice for the rare type of cancer research. without enough data /research backup. it is really hard to make a good treatment decision...
I will pay for all the sisters who have BC, MAY GOD BLESS US and GUIDE us through this trial in life ...
PS: ER/PR + HER2- Oncotype 14. Margin is not cleared, dont know about lymph nodes yet. will do surgery in July. Have not told my parents yet who are in China and will visit me soon. May GOD give them strength to face the challenge!!
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13 years ago I had a 4 cm ductal, non-invasive. I had a lumpectomy and axilary disection. It hadn't gone anywhere. No chemo or rad and only 1 month of Tamoxifen. I couldn't sleep so I stopped. This spring a mammo showed a small mucinous carcinoma cyst. Estrogen and progesterone positive, HR2 negative and clean margins after the lumpectomy. They labeled it a stage one. I am 62 and have decided to forego partial breast rad or aromatase inhibitors.
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I too was diagnosed with mucinous carcinoma in 8/09. I had a lumpectomy and sentinol node biopsy [all clear]. I had 8 weeks of radiation, no significant side effects. I am now on Arimidex for 5 years. Only side effects are minimal ankle pain on arising but I can walk it off within 10 min. I am extremely satisfied with my onc.,breast care center and my BS.
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I too was diagnosed with mucinous carcinoma and DCIS in January this year. I did 6 months chemo (taxol x 12 and AC x 4) followed by a radical lumpectomy last week with lymph node removal at MD Anderson in Houston. I have 8 weeks of radiation (Mon-Fri) next. I feel comfortable with my discision on the lumpectomy and radiation and could not have been more pleased with my Surgeon at MDA. I then will be on medication for 5 years after radiation. It has been a hard journey this year, but looking forward to having this all behind me. Lots of healing thoughts to everyone.
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My frail 91 year old mom had a lumpectomy on August 26, 2009 which turned out to be mucinous carcinoma. Due to her health and age there will be no further treatment. We three sisters are glad we made the decision to have it removed, and mom did very well through the surgery. She got her stiches out yesterday and everything looks real good for now. I'm so glad I found this site because I see now that it's not as rare as medical professionals once thought.
As the youngest of the three sisters, (52) I have a question. Does anyone know if this type of cancer is considered genetic? Are me & my sisters potential candidate's to get this type of cancer now? Should we discuss this with our doctors, I see mine next month. Last year after my mammogram I had to have an ultra sound followed by a biopsy, which they concluded was nothing but a cyst.
Thanks in advance for any information and thoughts. My prayers are with you all.
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Since I was diagnosed with pure mucinous breast cancer, I was advised to have genetic testing. The physicians believed that this type of breast cancer was NOT genetic. It came as a great relief, none the less, that I tested negative since I have an adult daughter and older sister. I am the only person on both sides of my family that has been diagnosed with breast cancer and I am the youngest woman on both sides of my family. The physicians did, however, mention that because I have now been diagnosed with breast cancer, my daughter and sister should remember to mention my history when they have screenings. Furthermore, since I have dense breasts, I was having sonograms in addition to mammograms. Pure mucinous breast cancer is usually found through sonograms. My mammograms were normal.
The takeaway message is -- you should know if you have dense breasts and if so, you should be having sonograms in addition to mammograms. Since mucinous breast cancer is rare, there hasn't been a "gene" identified that would put you at risk. However, dense breasts are a risk factor for breast cancer and need sonograms.
Hope that helps answer your question.
Prayers to your mother and with all of my breast cancer survivor sisters.
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Hi, Kalli.
Thank you for your care and for everyone who is so open and honest about their diagnoses and processing of it.
I am 41 years old and was diagnosed with Mucinous Carcinoma and DCIS.
The surgeon and oncologist presented the news with great hope and confidence that it is a very treatable cancer.
Reading these posts, however, I am made aware that depending on the type it might not be so easy to treat.
I will have an MRI, and they are recommending beginning with a reexcision lumpectomy and SLN.
The follow-up if it has not spread would be radiation.
I am wondering if masectomy is the best route to go, to avoid multiple surgeries, possibly, and to avoid radiation. I hear radiation makes you very tired. I am looking to avoid this if possible, as I have a pretty energy-demanding job and am currently living on my own.
Can you speak at all of the reasons for your decision to go the lumpectomy route vs. masectomy? What do you see as the advantages?
Thanks, Kalli.Peace,
Dmanni
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Dmanni, I have the same diagnosis as yours in Aug 2010. how big is your tumor? Mine is 3*2.8*2.5 and I have that lump since I was 15 (I am 39 now) I have these two kinds of cancer both in right breast. However, my lumpectomy was not successful as the surgeon found DCIS on other parts of breast he randomly sampled. He recommend uni-mx but I will talk with him on Oct 5th to have BMX. Who referred you to the Onc? I have to wait for my surgeon to refer me to the Onc.
So you will not have chemo? I am thinking to have chemo, but not sure if I should have some test done to see if the cancer would react on Chemo first? Will they test that using the cancer cells taken from our breast?
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Hi, meglove.
Thanks for writing. The lump they took out was 1.2 cm, but it measured bigger outside my breast.
Not sure if they got it all. I am really leaning toward having a masectomy. Do you have any thoughts on this? What is your reasoning for having the BMX?
The hospital I go to has you see the onc before the surgery. They choose one for you, and she partners with the surgeon.
Whether or not I will need chemo depends on the lymph node result, I assume.
Right now, they have only presented the options of lump/rad vs. masectomy
Thanks for responding as you are able.
Peace,
Dmanni.0 -
I will have mast on right breast for sure because I not only have lump but also having bloody discharge from right nipple so I was convinced the bleeding route has cancer cells so just taking out lump would not be enough. I told the surgeon I wanted a mast of right breast but he was not convinced.
I will talk to him to have bi-mast as my mother told me she noticed blood spots on my pajama at the position of left breast but she washed it off before showing it to me last month ( I only have bleeding in the middle of between two periods where the hormone level is at the peak level). so I am worried there is might be DCIS on left breast too, although mamo and US of left breast and armpit is clear. I have seen a few posts people did not find out they have DCIS until after bmx. I am not sure if the surgeon will be convinced I want BMX. Hope he is on the same page as mine.
Best wishes.
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Thanks, meglove.
My friend had a bilater mast, and she is doing very well and very relieved, too.
You are making a brave choice.
Best to you. Prayers.
Peace,
Dmanni0 -
I will have abdomen US and whole body scan on Oct 8th and 12th before BMX on 18th (hope the surgeon would allow me to keep this date after I tell him I want a BMX, not a UMX). Does anyone know if the mucinous carinoma can become mets easily? I haven't come across such information yet. I have posted a thread about lymph nodes and mets and it seems mets does not necessarily spread through nodes, it can met through blood system too. so I am wonderng what is the possibility with mucinous kind. Best wishes,Meg
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Hi all,
My oncologist informed me (don't know whether to believe or not) that pure mucinous does not usually invade lymph nodes and rarely spreads. I am seriously hoping that is the case!!!!!!
A good thing to look for in your path report is if there was lymph node invasion or vascular invasion noted. Nothing is for sure but at least it is a start.
Best wishes,
Tina
(almost 6 yr mucinous carcinoma survivor)
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Tina, Thanks for the information. I also certainly hope that is the case for mucinous carcinoma. Is yours non-invasive? Or mucinous is one type of invasive? I am invasive mucinous plus DCIS. I heard it is hard to identify mucinous and need special skills. Did you ask for 2nd opinion after your diagnosis?
Will stage be written in the path report too?
Meg.
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Hi Meg,
My stage and grade was on the path report. All breast cancer with the exception of DCIS and LCIS are considered invasive cancers. I believe that mucinous is more difficult to diagnose because it doesn't always show up on the mammo. Mine was diagnosed by ultrasound. It is a tricky one because it is a sac of mucous with scattered cancer cells within the sac. The problem then is if when the biopsy is done and only mucous and no cancer cells are in the specimen then the results is negative for cancer, it is difficult to get the actual cancer cell in the specimen that's why the mucinous tumors are often quite large when finally diagnosed. I did not ask for a second opinion in my case but I don't blame anyone for getting one especially with all the mistakes made with pathology results these days.
best wishes, Tina
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Tina,
Thank you. Glad to notice you are in Ontario. So do I. When you first diagnosed, why the doc took out so many nodes? I have done lumpectomy but the surgeon only checked sentinal node. but Dr found there is DCIS left in right breast so I will have BMX in Oct 18. Where is your onconogist located? Thanks. Meg
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