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Mucinous Carcinoma of the breast

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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2012

    I am so glad to see that our sisters are kind enough to keep us all posted on their journeys. The road map seems quite different for many of us. Thankfully, as each of you share your journey, perhaps you will be making the trip a little easier for the next traveller who stumbles along this path.



    The factor that we all have in common, besides the rarity of our tumors, is the importance of that pathology report to guide our treatment making decisions. While our journeys might be murky, what is crystal clear is the need to be absolutely sure about understanding the characteristics of each and everyone of our tumors. I think we are also very fortunate that we live in a time where genetic testing is shaping our care.





    I wish all our sisters well, where ever they are on their journeys. I hope everyone takes stock in knowing that if the journey seems too hard or that one thinks they might feel they may become lost, they should recall the sisters here that are guiding and I hope that brings the necessary strength to making that journey a little easier for all of us.

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited June 2012

    Hi Sara and all,

    Celebrating last fill of my TE today. That part went well and quickly.. and the timing for a 'rest period' during chemo works. This surely has required creative 'what shall I wear?' each day, though, don't you think?   Thanks for thinking of me tomorrow... l'll also visualize 'boring' results, I like that idea. ~smile~

    Keep remembering you've got a 'better diagnosis' than most. And even though I'm doing chemo because of a her2+ result....(.2% rare combination)  it's not the likely course of action for the rest of you! I guess I'm just saying that because if I'm posting here, all cranky and hairless, I don't want to be scaring anyone. However, although I know I'll lose my hair with this protocol.. I will focus on good ways to keep my spirits up.

    Cheers to all of you!

  • SaraAust
    SaraAust Member Posts: 22
    edited June 2012

    Hi FeelingtheMagic...I hope all went well with US and you were able to get some results today, we all know how it feels to wait to find out. I am sitting here with a glass of red thinking of you (it's 9:25pm here) so hopefully you too can enjoy a glass of something tonight to relax. As for clothes, I tend to wear a lot of scarves lately even though I know no one else would notice but I am a little bigger than usual (not such a bad thing) but I feel a little self conscious. (My husband keeps telling the BS to keep pumping though...his way of dealing with all this and I would consider it only that so many people on here have complained about being too big, unconfortable and in pain, so maybe this will do). I hope everyone is doing well and has a great weekend...

  • KnBsAngel
    KnBsAngel Member Posts: 6
    edited June 2012

    Went back to see the MO this week, armed with my many questions.  I again asked about chemo and she said with it being pure mucinous that I would probably not have any chemo, which relieved one of my stresses.  Rads to breast, axillary, clavical and back clavial however are a definite and I am good with that.  I also asked her about the lymph node removal.  I was quite stressed out after the last visit knowing level 1 and 2 removal along with rads raised my chances of LE.  The NP for my BS posted her report quite late and I only saw it within the last 2 wks, in it she says "talked with patient about FULL axillary removal" levels 1 - 3.  I did not EVER hear her say level 3.  This is all on my dominate side, so now my chances are even higher for LE!  I talked with the MO about not removing level 2 or 3 nodes and she said this would need to be discussed with BS (in August).  How do I preserve some QOL?  Anyone know if using ARM would be of any help?  Anything that I can do ahead of time to help keep the LE away?  I'm constantly on the computer researching and feel like its taking over my life.

    The tumor has not changed in size with it only being a month out she didn't expect to see much.  I feel like the shaped of it has changed some.  She said surgery is still 2-6 mos. out.    If the hormones destroy the tumors and the rads destroy whats left, why can't the nodes stay?  I rationally know the thinking is... your chancing leaving cancer behind but I just wanna scream because I feel like I'm between a rock and a hard place.  Take the nodes and pretty much know I'm gonna have LE or fight to keep the nodes and live with the possible return of cancer.  

    Thanks for just listening, single lady here.  While I have a wonderful mom and sister who are SUPER supportive, they are complete and total worriers and talking with them about this will only make more stress for them which then bounces back at me as worry, and I don't deal well with all the over worrying. Love them, but they are already making me crazy!Smile  And I haven't even had surgery!!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2012

    KnbsAngel...sounds like you need to schedule another meeting with the doctor to go over EXACTLY what she intends to do. You might want to bring a recorder to go over the conversation. You can also call the doctor as well and explain your concerns. Likewise, why not get a second opinion? You need to understand what all your options are and the doctor needs to satisfactorarly explain the justification for all of your treatments.



    I wish you well. We're here to support you!

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited June 2012

    First up.. my kemo song... have a whole lot of people singing it!  Feel free to join in anytime. ~smile~

    http://www.youtube.com/watch?v=WEHGMcJYang

    Next up.  First chemo today. Had allergic reaction so spent the whole day and back tomorrow. But feeling fine.

    Not so good news:  They've found 'something' on my thyroid and will require a needle biopsy.  I seem to have two phrases for this adventure. "WTF"  and "Onward Yo ho yo ho"

    Im beyond processing right now.  Grateful for support of family and friends, and a lot of magic and synchronicities happening.  Spent all day paddleboarding yesterday, and the day before at the Enchanted Forest (BC, Canada) with my daughters and granddaughters.  So feeding my soul, visualizing, finding humour and lightness...

    Sending love to all of you. 

  • Stena3912
    Stena3912 Member Posts: 18
    edited June 2012

    FeelingTheMagic:  I have a thyroid bx scheduled for today - bluck! The second oncologist that I went to actually did a small physicial (go figure) and found that the 'anatomy' on the left side of my neck was larger than that of my right.  I then had a neck ct which showed nodules then off to an U/S. The U/S showed 4 nodules: 3 cycstic and 1 (of course) that was a 1.1 cm solid mass w/microcalcifications.  I then start the googling process.  I have had a previous thyroidectomy - RT (which would explain why the anatomy was larger on my LT than RT) many years back for a benign process so the ENT dr says the odds are in my favor for another benign process, we'll see. 

     I am almost finished with radiation.  My last treatment is July 3!  I am still undecided on hormone therapy but am leaning toward 'no thanks'.  My OncoType DX was 11.  I know that no matter which I choose there will always be the lingering 'what if'.  I have an 8 year old daughter so I will do whatever it takes to be around for many years to come (can't miss those teen years!)!

    I still believe that all in all I'm truly blessed; however, there are those days that I just don't quite get it.  My favorite motto: 'It is what it is' but sometimes it just bites!!

    Prayers for us all!!!

  • Golden01
    Golden01 Member Posts: 527
    edited June 2012

    FeelingtheMagic and Stena3912 so sorry to hear about the thyroid biopsies, know you are surrounded by good thoughts! The waiting for the tests and results can be so very hard.

     I love the song from FeelingtheMagic! I didn't have chemo but I'll be humming your song today as you head off back to the chemo center today.  

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited June 2012

    Thank you, Golden!!

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited June 2012

    Stena, thinking of you today re your thyroid experience. Sending prayers and love! Thanks for updates when you get a chance!

  • Stena3912
    Stena3912 Member Posts: 18
    edited June 2012

    FeelingtheMagic: bx is done!  Not that I ever want to do it again but it was tolerable.  Compared to the 2 hour MRI guided bx's and the 2 painful needle locs, this was a walk in the park (probably Central Park)! My neck is slightly sore and swollen, nothing a little TLC, ice pack and Motrin can't handle!  14 years ago with my first thyroidectomy, my FNAs didn't consist of any type of local anesthesia - got love the military docs!  The Radiologist did state that 9 out of 10 individuals that come in for thyroid bx's are benign so my fingers and anything else I can manage are crossed!  I would very much like to be in that 10%! As fate would have it though, I missed my appt with my Med Onc this afternoon so I rescheduled.  Oh well, a little more time to contemplate Tamoxifen - bluck again!

    Prayers for all of us unique BC gals!!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited June 2012

    Yes indeed "Prayers for all of us unique BC/MC Girls" thanks for keeping us updated stage by stage. Thanks too for SaraAust for replying to my query where she lived in Australia. Sydney is a great place to be for the latest in BC treatment . May your progress be thorough & speedy. Feelingthemagic, how did your special time with your grand daughter work out? I think the Enchanted Forest sounds like a "magical place" to spend special family time. Stena3912 I am praying that you are in the 9/10 that have the benign thyroid growth. It sounds like a time when 9/10 is the best score. Thinking of you all as you attempt to make the "best treatment decisions that you can in the light of all the info that is currently available" Keep up the research Voraciousreader I am so glad you are addicted to finding out all you can. My addiction is personal support to people going through any of life's transitions. KnBsAngel I am hoping and praying that you don't get LE. I do feel for you having very supportive family who worry too much my dear sister is just the same variety so I have some idea of what it is like trying to give them some facts without setting off the worrying avalanche. So best wishes with it all. Hi everyone else logging in, you are not forgotten. Blessings and prayers for healing and encouragement. Tricianne.

  • SaraAust
    SaraAust Member Posts: 22
    edited June 2012

    Thinking of everyone but haven't had a chance to write. Feelingthemagic...the "WTF" moments just seem too often these days and I'm so sorry that you have to go through a biopsy now... how soon will they be able to do it? Hopeing and praying that it all comes back clear for you. All the best for your results too Stena...everything is crossed for you too...good luck! Please let us know how it all goes. Tricianne, I'm hoping that they can prove to me that they are the best at what they do, by this never coming back. I hope you too are doing well! Sorry for the quick reply but I'm packing for a girls long weekend away but I will definitely check in on Monday. Take care...Sara

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited June 2012

    Hello Sunshines,

    details: thyroid biopsy not until the 13th, as they have to wait til the third week after chemo to avoid risking infection. Responding extremely well to chemo so far. Think the steroids meant to reduce reaction, also are meant to get my floors and cupboards all scrubbed. Ha.

    Got my hair cut short today. I had long hair and that seemed too overwhelming to have it fall out in chunks.  So with granddaughter in charge of picking out the funky 'do,'  I love the cut. And we made it a fun event, so we could all see how cute Nana is going to look when her hair comes back after it's temporary disappearing act.  It worked.

    Tricianne, my passion too... as a life coach professionally, but as always in life, I do love supporting others to find their personal best way to live life. Trying to use my own 'techniques' to help me now!

    I suppose I should go explore the forums with those doing chemo. But so far, I like it best here. ~smile~

    Good wishes, all.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2012

    Mucinous breast carcinomas lack PIK3CA and AKT1 mutations.

    Authors

    Kehr EL,et al. Show allKehr EL, Jorns JM, Ang D, Warrick A, Neff T, Degnin M, Lewis R, Beadling C, Corless CL, Troxell ML.

    Journal

    Hum Pathol. 2012 Jun 15. [Epub ahead of print]

    Affiliation

    Department of Pathology, Oregon Health & Science University, Portland, OR 97239, USA.

    Abstract

    Activating point mutations in the phosphatidylinositol-3-kinase catalytic subunit (PIK3CA) are among the most common molecular defects in invasive breast cancer. Point mutations in the downstream kinase AKT1 are seen in a minority of carcinomas. These mutations are found preferentially in estrogen receptor-positive and Her2-positive breast carcinomas; however, special morphologic types of breast cancer have not been well studied. Twenty-nine cases of pure invasive mucinous carcinoma and 9 cases of ductal carcinoma with mucinous differentiation were screened for a panel of point mutations (>321 mutations in 30 genes) using a multiplex polymerase chain reaction panel with mass spectroscopy readout. In addition, associated ductal carcinoma in situ, hyperplasia, or columnar cell lesions were separately tested where available (25 lesions). In 3 invasive cases and 15 ductal carcinoma in situ/proliferative lesions, PIK3CA hotspot mutations were, instead, tested by direct sequencing. No point mutations were identified in invasive mucinous breast carcinoma. This contrasts with the 35% frequency of PIK3CA mutations in a comparative group of invasive ductal carcinomas of no special type. Interestingly, PIK3CA hotspot point mutations were identified in associated ductal carcinoma in situ (3/14) and hyperplasia (atypical ductal hyperplasia [2/3], usual ductal hyperplasia [2/3], columnar cell change [1/5]), suggesting that PIK3CA mutations may play a role in breast epithelial proliferation. This series represents the largest study, to date, of PIK3CA genotyping in mucinous carcinoma and supports the unique pathogenetics of invasive mucinous breast carcinoma.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2012

    I'm glad to see that pathologists are taking the time to study the genomics of mucinous breast cancer.  This is a very interesting study that I posted.  I've always wondered if there were "protective" genes that make mucinous bc less aggressive than other types.  This study mentions that a mutation that occurs in breast cancers DOESN'T occur in mucinous breast cancer. Could the lack of the mutation make it less aggressive?  Whatever.  The bottom line is that there are researchers studying mucinous breast cancer.

  • treegirl
    treegirl Member Posts: 13
    edited June 2012

    Voracious Reader, 

     Can I verify with you what is covered in the NCCN 2012 guidelines? I have my followup appt tomorrow with MO to determine whether i should do hormone therapy.  I am reluctant but want to be armed with facts. I have p. 20 bookmarked where it the flow chart says to "consider adjuvant therapy" for a mucinous tumor my size, but cannot find the detail you refer to as on page 97. Is it about the ER/PR+ nature? Maybe I will do a search on that. I am viewing the study on an iphone, the pages may flow differently.  

     Thanks and thanks for continuing to post studies etc. here for us. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2012

    Treegirl... Glad to hear that you found the flow chart. The additional info is found somewhere around pages 93 through 97. It discusses all the various trials regarding endocrine therapy depending upon menopausal status and for how long. Most of the trials and meta analysis is ongoing. But it should give you a framework to work with if you decide to do endocrine therapy. Since I was premenopausal at diagnosis, my doctor recommended 5 years of tamoxifen followed by 5 years of an AI pending further investigation. Ovarian Suppression and Zometa were also discussed.



    Good luck with your appointment. And BTW... If you decide to do Tamoxifen, make sure you see your GYN and get a baseline transvaginal ultrasound.

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited June 2012

    voracious.. thank you thank you! I keep telling friends that I hope you receive as much as you give for your dedication. You're such a help for us!
    I've yet to ask or question if they are considering the tamoxifen part of things anywhere down the road for the other +'s on my pathology reports. Or is that simply if one doesn't have chemo.
    Results from FISH test should be back today... but did I mention that if they came back negative, it would rock the cancer world, as they've said my first test was 100% positive and they count on that being accurate. Further extensive testing would be required.. and that's why we started the chemo to avoid going past the 'safe time to get started' after surgery.
    Chemo going well... light headed is all for the most part. Even going paddleboarding this weekend, but family in tow to keep an eye on me. ha!

    Hope you all have some magical little moments in your day today.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2012

    Thank you magic! Don't worry about me! I pray for all our sisters that they receive as good of care as my family and I do. I am blessed. Good luck!

  • stayinhappy
    stayinhappy Member Posts: 25
    edited July 2012

    I was first told that I would need Tamoxifen, radiation and lumpectomy.  Then, my Oncotype score of 20 changed the plan.  Docs now want to administer chemo (Taxotere) prior to surgery.  I am having a hard time accepting that I need chemo given the less agressive nature of this Mucinous cancer.  Reasons given by docs are my age (43) and the Onco score.  Any advice? I hesitate to refuse the chemo.  I surely don't want to face a recurrence.

    Also, wondered if I could get a review of my case by MD Anderson, or some other more advanced cancer center.  Is there a way to get your case reviewed or to consult distantly (phone, email) short of making an appointment and undergoing all the tests again?

    Many thanks!!!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2012

    Stayinhappy... You can have your tumor samples reviewed by pathology departments at other centers. Just go on the websites of MD Anderson, Hopkins etc. Their websites should explain what to do. By all means you can ask for a second or third opinion at another hospital as well AND you can also ask that your case be presented to the tumor board for review. I wish you well.

  • carpe_diem
    carpe_diem Member Posts: 599
    edited July 2012

    Stayinhappy,

    I recently made an appointment with Memorial Sloan-Kettering in New York City for a second opinion. They asked for reports on pathology and scans before assigning me to a doctor and I'm now sending them pathology slides and will bring a copy of my last PET/CT scan to my appointment on July 24. I had considered going to MD Anderson in Houston since I live in Texas, but the info on mucinous cancer on breastcancer.org lists the following:

    The medical experts for IDC Type: Mucinous Carcinoma of the Breast are:

    • Jennifer J. Griggs, M.D., medical oncologist/hematologist, Division of Hematology/Oncology at the University of Michigan, Ann Arbor, MI
    • Clifford Hudis, M.D., Chief, Breast Cancer Medicine Service, Memorial Sloan-Kettering Cancer Center, New York, NY

    These experts are members of the Breastcancer.org Professional Advisory Board, including more than 70 medical experts in breast cancer-related fields.

     I won't actually meet with Dr. Hudis (he's the head of the breast cancer department) but I'm hoping his expertise will be available to the doctor I do see.  New York was an easy choice for me since I can stay at my brother's apartment, but most cancer centers can help with housing arrangements.  If either Michigan or New York are options for you, they ought to be at the top of your list.

    My onc trained at MD Anderson and I'm not expecting any change in treatment plan based on the 2nd opinion, but I hope to have a clearer understanding of my situation and the confidence that it's based on the most up-to-date information on mucinous breast cancer.

    I understand that phone consultations for follow-up can be arranged, but that cancer centers generally will want to see you in person after reviewing reports and slides.  Does anyone know about long-distance arrangements for consultations?

     

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2012

    Carpe Diem... Good luck with your appointment in New York. I hope you will post after your appointment and let us know what they say. I wish you well.

  • carpe_diem
    carpe_diem Member Posts: 599
    edited July 2012

    I found some additional information on the breastcancer.org section on getting a sevond opinion under 

    Deciding Where to Go for a Second Opinion

    http://www.breastcancer.org/treatment/second_opinion/where.jsp

     "A few major medical centers — such as the Cleveland Clinic,Johns Hopkins, and Harvard-affiliated Partners HealthCare — now offer online second opinion services that don’t require an in-person visit. A specialist would review all of your test results and other information to compile a report of recommendations about your care, which is then sent to you and/or your current doctor. Because this type of service is so new, insurance companies don’t always cover the expense. Some state medical boards don’t allow remote second opinions, so you also would need to call the cancer center or check the website to find out whether residents of your state are eligible. If it’s impossible for you to travel but you really want a second opinion from a physician at a top-flight institution, this may be a good option for you."

    Hope this helps.

    Janet 

  • FeelingtheMagic
    FeelingtheMagic Member Posts: 103
    edited July 2012

    Carpe Diem, way to go on getting more opinions. Looking forward to hearing what you learn.

    Chemo going well... day 11, and the last two days I've felt almost totally fine. Even going camping this weekend. So involved in this healing part of things, I forgot to call Doc for results of FISH test! 
    Insanely, my daughter's mother-in-law was also just diagnosed with BC. We're all baffled. At least, I can help her get to the 'good' resources more quickly than it took for me.

  • stayinhappy
    stayinhappy Member Posts: 25
    edited July 2012

    Thank you!  Great information! So helpful.

  • Stena3912
    Stena3912 Member Posts: 18
    edited July 2012

    Haven't posted in a bit so here it goes:  my thyroid bx was (-) ca, some type of inflammatory issue - will f/u in 6 mths; finished rad July 3 (same day my husband had surgery to repair a torn bicep tendon), had appt with med onc to discuss hormone tx, I was leaning more toward an ovarian abliation because I so do not want to take a pill for the next 5 years and the list of side effects - OMGoodness!!  My favorites were: 'can cause additional cancer, like liver ca, cataracts BUT you can just get surgery and hair thinning (yes, I know it's vain but still don't like it)'.  I'll never get the 'weight loss' one!!  Now that I think about it, I didn't even see DVT listed on this set of side effects!  So, needless to say I have the unopened Tamoxifen bottle still in the bag on my counter.  Even though I've talked to a couple of women and most have had no side effects.  One elderly lady had the thinning hair effect!  No one seemed to have the weight loss one either. 

    Yes, I'm scared to death to open it!  There are times, and forgive me if this sounds awful, that this breast cancer is a scarlet letter!!

    So any words of wisdom, comfort, encouragement on how to open that bottle and committ myself to at least try it are truly appreciated!

     Peace to us all!!

  • NJvictoria
    NJvictoria Member Posts: 45
    edited July 2012

    Hi Stena,

    I kind of look at the tamoxifen as my own little "pac man" that eats up any little nasty cells that are cruising through my body. I've been on it for the last year and a half and have had just a little weight gain. So I've started to add walking to my exercise routine and hopefully the weight will come off.

    Vikki

  • tricianneAust
    tricianneAust Member Posts: 153
    edited July 2012

    Hi Stena3912, Its good to hear that the thyroid diagnosis wasn't cancer, every thing that goes wrong with our health for a while immediately needs the cancer check, so it does get a bit scary. Like NJVictoria Tamoxifen hasn't been loaded with side effects for me, I have also been on it since Dec 2000 and now it seems like a non event. Initially I got rather tired and weepy, who knows how much the other treatment was part of that, then got a few panic attacks when I got overly anxious about matters that I normally deal with easily, plus I had some vaginal discharge. Everyone I have talked to going though the same stages at the same time as I was all found by three to four months the Tamoxifen SE faded away.So far no other problems and life is very back to normal. Most of the time I forget I have had BC then I just log on to this website to keep you all prayed for from top to toe. It is such an immediate response type website to browse though the other emails and get lots of answers to questions and concerns.

    So praying for you all right now, that your cancer is healed and that you manage all the decisions that you need to make.

    Blessings Tricianne.

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