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Mucinous Carcinoma of the breast

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  • Melsyboo
    Melsyboo Member Posts: 4
    edited February 2010

    Hi everyone. I had originally posted under another topic about my mom, but wanted to add it here also..She was just diagnosed with this as well..Here is a snippet of the path report-

     cellular mucinous carcinoma, invasive, histologic grade 2 adjacent breast tissue shows proliferative fibrocystic changes.

    She is 65 years old and very scared. She has other major health issues, such as kidney failure, which she goes to dialysis 3 times a week. The Dr has her scheduled for another mammogram Feb 24. I am not sure why since her original mammo didn't even show the spot that was biopsied! Kind of odd to me. She also has 2 other appts with a radiologist and also an oncologist. We are all just in shock today getting all this info thrown at us. 

  • NewBride
    NewBride Member Posts: 126
    edited February 2010

    Raili, my DCIS  was abot 4cm.  I was only about a 32A so I elected to have MX and immediate nipple sparing 1Step recon.  After a lumpectomy there just wouldn't have been much left.  MX means I most likely won't need rads.  Nothing to shoot at.  My understanding from what I have learned on these boards and from other survivors is that rads tend to thin the skin thus making reconstruction possibly more difficult if it is needed later on.   Decisions are tough.  You might want to look at my profile.  I think the answers to my questions about lumpectomy vs MX are still  posted .  If not, the topic is called 32A Lumpectomy.  There were extensive opinions on both sides that may help you come to a decision.  I know how hard it is to choose.  Good luck.

    Tumor board meets tomorrow to discuss my case.  As soon as I know anything that may be of help to us here I will post.

    That's about all for now.  Kind of crappy day at the PS. Nipple is showing signs of escar.  We're going to wait and see if it heals but it may have to come off (deep sigh here).

  • dtol
    dtol Member Posts: 3
    edited February 2010

    I am hoping I can find information from someone that has been through this On Dec. 2n I had a my mammogram (  first one in 4 years) they found a lump and called me back for ultra sound and could not detemine if it was anything and deceided to wait the 6 months and re-check, after a month they called be back when they found my historical mammograms and determined that the lump was new and decided to do a core biospy, last week I was called and told that they found mucinous matter in my core biopsy and now want to do a surgical biopsy. I have a consult with a surgeon on this Tuesday, I have no idea what questions to ask. There is not much info about mucinous lumps but from what i see on the internet it appears this is a rare form of breast cancer I am not sure if they are saying that is what I have or the surgical biopsy is to tell me if I have this or not. any infomation would help as I am freaking out and 3 more days to my consult.

  • Wizzy
    Wizzy Member Posts: 6
    edited February 2010

    Hi dtol.

    I've only just found your post so you are quite possibly on your way to the consultation as I write! I hope you now have the details you need from your consultant to know what you're dealing with and that all goes well with any future tests/investigations. There are a lot of people on here who will "listen" once you know whats happening so do come back and share any worries.

    It wasn't very good of them to just call and tell you there was mucinous matter without being more specific! Obviously, when you get a call like that, you're not in the best frame of mind to instantly pull up the questions... they come the minute you put the phone down!! I'd say the main questions are "what have you found" & "what treatment do you suggest".

    My consultant told me that, if you have to have a cancerous lump, mucinous is the best because its slow growing and less likely to spread than other types. I had my mammo just before Christmas, biopsy on 31st Dec, got the diagnosis on 11th Jan and had my surgery last Thursday.(wide local excision and sentinel lymph node biospy). If it helps any, I'm feeling ok and haven't had a great deal of pain. Now I have to wait until 24th for histology reports as to whether they got clear margins and if  the nodes are involved

    take care

  • dtol
    dtol Member Posts: 3
    edited February 2010

    HI Wizzy, Thank you for the informationand kind words.

     I go for my consult this morning, and have a list of questions ready, as you said when they called I was so shocked I had no idea what to say or ask.  I am nervous about what they have found, but very grateful to have found this site.

     I wish you the best with your news on the 24th, I will update my post after my consult today.

  • NewBride
    NewBride Member Posts: 126
    edited February 2010

    Hello to you all.  I haven't had much to report.  Breast Conference did meet on the 2nd. In the words of my Nurse Navigator, "No huge new treatment ideas."  My BS is not wanting to go back for node dissection due to risk of lymphadema.  Apparently, node dissection might not be conclusive anyway.  11 doctors did concur with my OC that it is better to overtreat than undertreat so it may be chemo for me.  I am still waiting to hear the results of my Oncotype DX.

    Any input  that you ladies may have for me is much appreciated.

    Raili, thanks for the link.  It may make my decision easier.  Chemo scares me but lurking undiscovered cancer scares me more, I think.

    For those facing the MX vs. Lumpectomy, I had a left side nipple sparing mastectomy with 1Step reconstruction.  I am just about 3 weeks post op and while it is not my natural breast I am adjusting and can see a day when it will all be ok and even look ok too.

  • bstortz
    bstortz Member Posts: 3
    edited February 2010

    Hello All-

    Just wanted to say hello and introduce myself.  I am 33 and was diagnosed at age 32 with this same type of BC.  I was completely shocked and scared, but am now almost one year past diagnosis.  Mine ended up being Stage T1C (tumor was 1.4x1.5x2.0) Lymph nodes were all clear--had 5 removed.  Er+/PR+ and her2-.  I opted to do the BRCA1 and BRCA2 test before deciding on my surgery.  I was not a carrier of the mutation so I ended up with a lumpectomy.  I also did the OncoTypeDX and got a score of 22 (the intermediate area).  I did do 4 rounds of TC and then 36 rads and started tamoxifen then as well.  I was diagnosed in March 2009 and finished with treatment October 24 2009.  I was happy to see a post about another woman who was 31 when diagnosed and is now 57--thank you for sharing!  It was interesting to see other 30somethings here with me on this board.  Take care and be strong!

  • dtol
    dtol Member Posts: 3
    edited February 2010

    I have one question for those of you that have diagonsed with Mucinous Carcinoma as from what I can see there are not many. 

    I had my core biopsy and they found mucinous matter in a cyst, next step surgial biopsy.  When you were diagnosed were they able to determine breast cancer right away or did you require a  surgical biopsy also. They found mucinous matter in a cyst and will not rule out the possibility of this being mucinous carcinoma of the breast with out doing the surgical biopsy I think that they are doing the surgical biopsy as a precaution. I appericate any informaton.

  • bstortz
    bstortz Member Posts: 3
    edited February 2010

    I was diagnosed from my core biopsy which was done in a breast surgeon's office.  Mine appeared to be a fibroadenoma....it was round and smooth.  But, the core biopsy stated Infiltrating Mammary Carcinoma with Mucinous Tendencies.  Best wishes for you---I will pray for only a cyst!!!

  • raili
    raili Member Posts: 96
    edited February 2010

    Wizzy, I'm glad to hear your surgery's over with and you're healing well!  Why are they making you wait until the 24th to get the results of your pathology report?  That seems like such a long wait! :( 

    NewBride, that's good that you don't have to have node dissection.  Do you have an estimate of when you'll know your Oncotype score?  I'm glad you're healing well from your mx.

     Bstortz, sorry you have to join us here!  WOW, I can't believe how many of us are in our 30s, or were dx'd in our 30s.  What's up with that??  From day one with my surgeon, I've been joking about how I have "the old lady cancer"... but... is that changing??  Are we younger women becoming the new norm for mucinous cancer??  I sure hope there are researchers studying this.

     I'm also disturbed by all the chemo going on for mucinous cancer... I don't understand.  Mucinous, I thought, was the type of BC LEAST LIKELY to spread, to the point where it's almost an oxymoron to call it invasive cancer.  But I just had my first meeting with the oncologist, and she's recommending I either have chemo or my ovaries removed, which really shocked me.  That seems so extreme for a 1.5cm, Stage 1/Grade 2 MUCINOUS tumor, with NO lymph involvement.  I still need to have my tumor sent for the Oncotype test, but I seriously doubt I will agree to chemo, and no way will I have my ovaries removed.

  • NewBride
    NewBride Member Posts: 126
    edited February 2010

    Wow Raili.  You and I do sound alot alike.  I am quite a bit older at 50 years.  Other than that our stories seem quite similar.  The chemo/lose your ovaries conversation is one I seem to recall from my last appt. with my OC.  Hormone therapy was mentioned at some point as well.  I have to admit that the Tamoxifen I thought I would opt out of is starting to look pretty good.  It just looks like that may be the lesser of three evils.  Some choice, huh?  I looked at your profile and noticed that you recommend a book that your surgeon likes.  Where is it available?  Like you, I'm moving toward a healthier diet and including organic food rather than processed "food like" items.  My wake up call may have come late but I don't think I want to pay people to poison me any more.  Big talk, I know, from the girl who will probably say yes to chemo but still a good idea to keep me strong and help to fight recurrence in the future.

    I find out my Oncotype score at the end of next week.  Right now it's just all about prayer.  I must say, after my amazingly easy surgical experience, I begin to believe in the power of prayer more and more.  So say some for me, I'll say some for you and hopefully we'll all get through this relatively unscathed.

    bstortz,  I'm so glad you are here.  It sounds like you are the one who has gone through what looks like may be coming up for me.  I'm so scared but it is wonderful to see someone who made it through okay.  I hope you stick around and don't mind my (probably endless) questions.

    Well, I've had about as much cancer as I can stand right now so I think I'll go bury my nose in a book for a little while. I'll check back later.  Have a good day, everyone.

  • raili
    raili Member Posts: 96
    edited February 2010

    NewBride, yes, our situations have a lot in common!  We both had mucinous tumors + DCIS, diagnosed within 2 weeks of each other!  I need to update my profile, though, because apparently both my DCIS and mucinous tumor were Grade 2 (instead of 1) and the mucinous was 1.5 cm (instead of 1)... argh.

    Yes, my onc recommended hormone therapy, as well...I am undecided, but leaning towards saying no.  I think my onc wants me to do hormone therapy regardless of whether or not I do chemo, so it's sadly not a replacement for chemo.  Ovary removal would be a replacement for chemo.  I recorded our appointment (just the audio) on my MP3 player so that I could listen to it later instead of stressing out trying to take notes about everything she was saying... so this afternoon I went out for a long walk in the sunshine to listen to our conversation on my headphones, and UGH, it nearly killed my afternoon.  I had to calm down by sitting on a bench in a sunbeam, practicing deep breathing, listening to soothing music instead, and scribbling my frustration out in my journal.

    The Anticancer book is very popular right now, so I'm assuming it's available at most booksellers... I got mine through Amazon.  It's great because it's a very UPLIFTING book about all of the ways in which we can change our diets, lifestyles, and environments to make our bodies unwelcoming places for cancer.  The author recommends doing these things along with conventional treatments, not instead of... but I may refuse chemo.  I will either have a mastectomy or the 6 weeks of radiation (I haven't yet decided which is the lesser of the evils), but I'm drawing the line at purposefully poisoning myself.  The online tool Adjuvant!online predicted that I have a 35% chance of recurrence within the next 10 years if I don't do hormone therapy or chemo, but that was calculated based only upon my age, general health, tumor size/grade/stage, and receptor status.  Adjuvant!online does NOT distinguish between mucinous and other types of cancer, nor does it take diet and lifestyle changes into account - it can't, because those are things that can't be scientifically measured.  Adjuvant!online thus assumes that the person it is making its calculations about eats a mainstream diet and lives a mainstream lifestyle and will continue to do so after diagnosis/treatment.  There is no way to measure exactly how much diet and lifestyle changes would reduce my risk... but I have to believe the risk reduction is significant.  

    By the time a tumor is 1cm in size, it's likely to have been growing for 8-12 years already.  What that says to me, is that 8-12 years ago, the conditions of my body and life were such that my body was "fertile soil" for cancer to grow in.  During the past few years, however, I've made BIG changes in all areas of my life, and I'm continuing to do so...learning more and more about what "living an anti-cancer lifestyle" means... and it's exciting because it means there are lots of things I can do to make my body a place where cancer cannot grow anymore [edited to add: HOPEFULLY.  But of course, I know there are no guarantees, and the cancer may very well return no matter what I do.  But I'm willing to take that risk].  That's what I love about the Anticancer book - it's a balm for the "false helplessness" that oncologists instill in us by telling us that our ONLY options are having our ovaries ripped out, killing our digestive systems and immune systems and hair and GOOD CELLS with chemo, or spending half a decade taking early-menopause-inducing drugs.  

     Wow, I'm rambling...and I must get to my niece's 4th birthday party!  Take care!

  • akp
    akp Member Posts: 1
    edited February 2010

    Hey all- never done anything like this before, but i don't really know anyone else with breast cancer. I'm 32, diagnosed in January, 1.2 cm mucinous tumor w/ neg margins, neg nodes. ER/PR +, HER2-neu negative. Awaiting oncotype. Will start radiation next week.  Have a few questions... heard somewhere that radiation can be really tiring- which doesn't make a whole lot of sense to me, and I hope is not true. Anyone have experience with this? Also- my oncologist is talking about using a LRH-agonist to "shut down my ovaries" in addition to tamoxifen. I'm curious about how bothersome the side effects will be... and I guess the side effects of tamoxifen too. And it seems like the additive benefit of this (in addition to tamoxifen) is not really known- and probably has not been studied in mucinous tumors. Wondering if it's worth it.... Any thoughts about all this?

  • Wizzy
    Wizzy Member Posts: 6
    edited February 2010

    Hi Railli - they make me wait this long because I live in England =o) Apparently, they have their case conference meetings on Fridays so mine wont come up for discussion until this coming Friday (19th) They've told me not to drive until I've been for the consultation on 24th - which is a real nuisance because it means I cant go alone. I'm a bit in limbo because, until I know those results, I dont know what the next step will be.... but then, that's the way it goes. I'm just putting it on the back burner for now. I consider myself very lucky to have reached the ripe old age of 55 before it "got" me! The lady in the next bed to me went thru WLE & SLNB at the age of 29 & now, 13 years on has had mx.

    I'm surprised at the thought of a 1cm tumour taking 8 years to grow ! I've been scanned and tested umpteen times over the last 2 years including 2 clear MRIs.

    Best wishes to everyone wherever you've reached.

  • LaurelS
    LaurelS Member Posts: 3
    edited February 2010

    Talk about rare.  I had a triple positive, mucious tumor.  Mucinous breast cancer is rarely ever  Her2 positive.  I was highly Her2 positive!  My breast surgeon had it retested because she was so surprised to find Her2 + mucinous breast cancer.  What are the odds? 

  • LaurelS
    LaurelS Member Posts: 3
    edited February 2010

    Talk about rare.  I had a triple positive, mucious tumor.  Mucinous breast cancer is rarely ever  Her2 positive.  I was highly Her2 positive!  My breast surgeon had it retested because she was so surprised to find Her2 + mucinous breast cancer.  What are the odds? 

  • Melsyboo
    Melsyboo Member Posts: 4
    edited February 2010

    My mom is having a stereotactic biopsy today. She is super nervous. They want to check out the 2 tiny grains of calcifications to see if they are cancerous or not. They already know she has mucinous carcinoma, but want to make sure they have everything checked before her surgery I guess. She is scheduled for surgery March 5th, but no time yet..I assume they are waiting on these biopsy results before deciding what to do in surgery?

  • raili
    raili Member Posts: 96
    edited February 2010

    Laurel, wow, you had the rare amongst the rare indeed! 

    I go to a top 100 hospital, and my surgeon told me she only sees approximately 5 women per year with mucinous cancer, and none as young as me.  Kind of a pain being the oddball sometimes, isn't it??

    Melsyboo, I hope your mom's biopsy goes well!  I was in a similar situation - we already knew I had a mucinous tumor, and then an ultrasound discovered "3 mm" of microcalcifications.  However, I didn't need to have the calcs biopsied, because they were in the same quadrant of my breast as the tumor, and thus, could just be removed during the lumpectomy along with the tumor.  I ended up needing a reexcision because those assumed-to-be-benign calcs turned out to be 3 cm of DCIS... I hope your mom's calcs are benign!

  • Melsyboo
    Melsyboo Member Posts: 4
    edited February 2010

    I hope they are benign as well! How was your lumpectomy? I am sure my mom is having one March 5th and would like to know what to expect. I am sure everyone is different, but about how long of a surgery is it? Is it a quick recovery? She is 65 and has other health issues, so I hate to have her go through more pain!

  • raili
    raili Member Posts: 96
    edited February 2010

    Hi Melsy, my lumpectomy went well, much better than I had expected... but you're right, everyone is different!  And a person's experience with a lumpectomy depends upon SO many variables - age, general health, experience of surgeon, quality of hospital, whether a sentinel node biopsy or axillary node dissection is being done at the same time, weight/BMI, experience of anesthesiologist, quality of nursing care while in the hospital, the medications prescribed afterwards, etc., etc.!

    I'm 31 and in great health, athletic, etc., so it was a pretty quick recovery for me - I only took the Percoset for the first day and a half or so, and then switched to OTC pain meds for a couple days, and then didn't need even those.  I spent nearly a full week resting, either in bed or on the couch, except for taking the occasional 10-20 min walk... I avoided using my arm too much, the one that had had the sentinel node biopsy... but in hindsight, I think I rested TOO much and was TOO careful!  I actually felt fine but was MAKING myself rest and avoid activities!  When my surgeon called to check on me, she was happy to hear I was doing so well, but not surprised - she said generally the recovery from a lumpectomy is pretty quick, but she doesn't like to tell patients that ahead of time, because she doesn't want them to feel bad if their recovery takes longer - because everyone's different!!  I was expecting to have such limited arm mobility that I wouldn't be able to lift my arms above my head to even put on a T-shirt, and had had my friends loan me all their button-down shirts for my recovery period.  But I could lift my arm just FINE, as it turned out!  My surgeon said that it helps that I'm thin - a sentinel node biopsy can cause more difficulties if one has to cut through more layers of skin to access the lymph nodes.

    I'd recommend reading through/posting in the surgery forum to get more information about what a lumpectomy surgery is like, and to understand the wide range of women's experiences with it.  And ask/encourage your mom to ask her surgeon about how her other health issues may impact her lumpectomy recovery, to come up with a plan/strategies ahead of time for addressing possible complications that may arise.

  • Melsyboo
    Melsyboo Member Posts: 4
    edited February 2010

    Hi Raili-

    Her stereotactic biopsy went well. She said it was nothing like she imagined it would be. She had a tough time getting on her stomach, but once she did she was fine. The actual procedure took about 15 minutes, so she was happy. She has 1 stitch and a small square gauze pad covering. I didn't see any bruising at all. So, next week she will meet with her BS and see what the results are. Her surgery is the following Friday, and hopefully it goes as well as every other test/biopsy has gone. I am not sure if they are removing any nodes or not. I am sure she will get that info next week. 

  • bstortz
    bstortz Member Posts: 3
    edited February 2010

    Hello ladies! 

    I hope everyone is doing well.  Raili--yes, it does seem that there are more of us in our 30s with this type of cancer.  I have two young girls who are 3 and 4 years old.  Before my first child was born, I had 3 miscarriages and then had IVF.  I cannot help but wonder if those fertility drugs had something to do with it.  Most doctors say probably not but it could have been a catalyst of what was to come later in life for me.  I do hear there is continuing research on the topic of fertility meds and breast cancer risk.

     As far as follow up care after surgery, I did opt for chemo.  It is a decision that you hope you don't have to make.  With two young children and being a healthy person (other than BC), I felt there really was no choice for me.  My score of 22 on the oncotype correlates with a 14% chance of recurrence 10 years out with rads and tamoxifen only.  With the chemo, it will decrease that 14% even more.  I had made my mind up that if I was in the intermediate range that I would do the chemo.  It wasn't that bad.  I did lose my hair, but I had an amazing wig--human hair colored to match my own--and insurance paid for every penny.  I only had 4 rounds--1 round every 3 weeks.  Friends would come and sit with me and we would read magazines, eat, catch up.  I drove myself there and back each time.  I felt bad (achy) on days  4 and 5 after treatment but that was it.  I took the drug EMEND for any stomach issues--I had none.  Ok, I will not go on about this, but if chemo is in anyone's future--you can do it!!!!!!  Drink lots of water and accept the help from family and friends.  BUT--one thing the doc told me---"Those who do more CAN do more."  I found this to be true.  We continued to live our lives, take vacation, go out, play with kids, and I was even in a wedding with my wig--people had NO idea.  So, keep your chin up and be strong!

     Melysboo, I totally agree with Raili that  recovery is not bad.  I took my pain meds the day of surgery and the next morning.  By that afternoon, I was on tylenol.  The hardest part is lifting your arm.  I tried to gently lift more and more each day.  By day 5 or so, I was fine.  Back exercising with weights (low) at 2 weeks post op.  

    Newbride- I will pray for good results for you and no chemo.  But, if you end up doing it, you can do it!!!  If you have any questions, do not be afraid to ask.  Having cancer was a terrifying diagnosis for me.  I lost my father to colon cancer at age 50.  He was diagnosed at age 45.  I was always a worrier....and, that is how I found my own.  Now that I am almost a year out, I am trying to worry less and to enjoy life and all of my blessings.  I am now serving on a Cancer Foundation board in my local area.  I try to make lemonade out of these lemons!!  I don't check the site too often bc it can be bad for me to spend too much time on this stuff.  I will check back to answer any questions.  And, if you can do messages, please feel free to send me a message.

    akp - The radiation does seem to really tire some people.  I just tried to keep going and not let it slow me down.  I did fine and expected fatigue but really didn't have any.  My docs encouraged slower weekends and exercise during the week if possible.  I do think those things helped.

     I hope everyone is doing well.  Forgive me for not checking back sooner.  Take good care.

  • raili
    raili Member Posts: 96
    edited February 2010

    Bstortz, thanks for checking in with us!

    I'm glad you have two wonderful daughters to keep you going. :)  It's great that chemo was so manageable for you!  And that's great that you're helping others through serving on the Cancer Foundation board!  I've thought about that, too... how once I'm done with treatment, I'd like to somehow help other women who are going through this.

    Okay, I have a rather bizarre question for everyone with mucinous carcinoma... it's such a RARE kind, and my mom asked my surgeon if there is any knowledge about why some women develop the types of breast cancer that they do, and she said no, not yet.  So I know there's no real medical knowledge about why we have mucinous cancer, as opposed to another type, but I'm just curious about it... I've been prone to other mucous-y conditions my whole life - have you??  As a kid, I had a lot of colds and sinus infections, I now have allergies, blocked ears/swollen tonsils/chronic inflammation, etc.  Lots of mucous in general.  And I wonder if it's sheer coincidence that the cancer in my breast is mucinous as well!

  • Wizzy
    Wizzy Member Posts: 6
    edited February 2010

    I have always had a tendency to bronchitis and general mucous-ness of the chest so maybe there is  link?

    Tomorrow afternoon I get the histology results from the WLE & SLNB I had almost 3weeks ago.I have compiled a list of questions for each of the possible scenarios so, we shall see what the next step will be.....

    take care everyone x

  • Wizzy
    Wizzy Member Posts: 6
    edited February 2010

    Just had the best news I could get!! I had NO node involvement, I have good clear margins,  ER positive HER2 neg. I'll have 3 wks rads and Tamoxifen but no chemo and no re-excision. Wooooo Hooooo. Hope anyone else waiting for results is this lucky xx

  • Sherri_V
    Sherri_V Member Posts: 35
    edited February 2010

    My tumor is/was also a mucinous carcinoma.  I had neoadjuvant chemo - 1 round not counted due to being wrong cocktail (at the beginning - drs. wanted to get started and did a "generic" chemo while more tests were pending).  Three rounds were counted then I had surgery - both a lumpectomy & a total hysterectomy as my tumor was 100% ER+.

    Today was my first oncologist appointment, post surgery. 

    I think she was holding back some information to make things easier to swallow. 

    Yes, my tumor shrank from 5 cm to 2.5 cm, which is good.  She downgraded me from Stage 3b to Stage 2, Grade 1 - again, that's good. 

    However, I was told that I need another 3 rounds of chemo :(  I start back on March 10 and will get it every 3 weeks.  I was hoping to start radiation next month but I guess that's out of the question now.  Looks like I will finally be finished with chemo & rads sometime in June. 

    Tomorrow I have a post surgical appointment with the dr. who did my hysterectomy.  I'm HOPING to get cleared to drive so I can go back to work.  I miss being out in the non-medical world *Ü*

  • NewBride
    NewBride Member Posts: 126
    edited February 2010

    Hi to everyone.  I've been absent from here until I could get definitive answers.  Well, not much luck there.  I'm not even sure if I actually belong on this particular thread.  I saw my OC on Friday and he tells me that I have IDC with mucinous tendencies.  My BS says that it was a "diffuse" tumor and my breasts are dense so that is why my tumor was missed by mammos.  Anyway, my Oncotype DX is 25 so I will be doing 4 rounds of Taxotere and Cytoxan.  Thanks much to Bstortz for the info on chemo.  It is also my understanding that those who do more do well.  I intend to keep walking a couple of miles a day if I can.

    Raili,  in answer to your question, yes I have also had problems with phlegm (mucus).  I have had asthma since childhood and every cold I ever caught turned into bronchitis requiring lots of cough syrup with expectorant.  Something I inherited from my dad who , as an aside, was diagnosed in the 1980's with bladder cancer.  I don't know if it was a mucinous tumor that was removed by surgery but I understand that bladder cancer can also present in a mucinous form.  Unfortunately Dad passed about 10 years later from what I now believe was a distant recurrence of that cancer.  Sort of makes my chemo choice a little easier.  I will also be employing some naturopathic methods (diet etc.) to combat recurrence

    Well that's about it.  It's off to the chemo threads for me.  I'll check back here a little later. 

  • TreadSoftly
    TreadSoftly Member Posts: 88
    edited February 2010

    Hi Girls,

    Wow, reading through some of your posts, I can identify definite similarities between us!  Im 29, diagnosed last September with mixed Mucinous carcinoma (70%) and IDC (30%), grade 2, 2.9cm.  I was in perfect health at the time, running half marathons regularly and training for a full one.

    I had neoadjuvant chemo (4 rounds of TC), then lumpectomy with clear margins and am starting rads next week.  Chemo has put me into a 'chemopause' which, I hope, is temporary (no children yet!).  While im not menstruating Im on femara but will change to tamoxifen when periods return..... 

    AKP - re LHRH agonists at the same time as tamoxifen - I spoke to my onc about this as I REALLY didnt want to take it.  He said there is no evidence out there that there is any added benefit to LHRH agonist plus tamoxifen Versus tamoxifen alone and a lot of young women were opting out of it due to quality of life issues etc.  There is a clinical trial (SOFT trial) addressing this issue now.

    Raili -  in response to your mucus theory - I never had any mucus issues in my life.  I have just read the Anti-cancer book too and am making changes to my diet  (while I exercised and did yoga pre BC diagnosis, I was quite fond of processed foods, meat and dairy).

    Talk soon

  • angarc
    angarc Member Posts: 1
    edited March 2010

    Hi everyone from Spain! I'm 46 y.o., I've been recently diagnosticated with pure mucinous breast cancer and this is the only site where I have been able to found a forum about my condition. It has been very encouraging to know about women who are or were in similar circunstances than me. After a year with a lump in my right breast with appearance of benignance on mammography and ultrasound scans, doctors decided to excise it due to it had grown since then. When I was told the result of biopsy was cancer I was shocked for several days... I had to be reoperated in order to get clear margins and to perform the biopsy of sentinel node. In the end the lump was of 2.5 cm, the 3 sentinel nodes weren't affected and the estrogen and progesterone receptors were positive. After surgery I was on chemo (four cycles), radiotherapy and now I'm having tamoxifen. Oncotype wasn't performed in my case not even was offered to me. I know I'm lucky to have a not too aggressive type of cancer after all, but I'm very worried about the delay in the diagnostic. On the other hand, I'm worried too about the possible side effects of tamoxifen, specially the increased probability of having cancer of uterus.

    Take care everyone

  • TLH
    TLH Member Posts: 1
    edited April 2010

    Hi, everyone, I am new here.  I just posted a new topic for advice re my sister's case and then I found this specific thread related to my sister's dx.  My sister was also dx'd this rare, supposed to be slow growing type of breast cancer when she was 46.  However, she got post mastectomy local recurrence within two yrs when she was on tamoxifen.  She had further surgery, radiation, plus ovaries removal last year.  She declined chemo/against her Onc's advice as 2nd opinion Onc told her that mucinous breast cancer should be treated "locally" aggressive and does not respond to chemo very well.  Recently, my sister is considering changing Onc but feels undecided.  She loves her current tx team except Onc who kept selling chemo but not emotionally supportive.  She is thinking of going to 2nd Onc who sounded more knowledgeable re mucinous breast cancer but that Onc is at another cancer center.  I think the 2nd opinion Onc sees this type of cancer too good to be true.  Anyone here has any advice?  By the way, she is currently on Arimidex and Zometa which the 2nd Onc thinks not the must for mucinous.