Medullary breast cancer?

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HeatherBLocklear
HeatherBLocklear Member Posts: 1,370
Medullary breast cancer?
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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited February 2008

    Hi all,

    I'm interested in knowing how many of us have been diagnosed with medullary BC, a relatively rare subgroup of breast carcinoma. I'm asking specifically because I'd like to know what treatment options you were offered or are currently being offered. Thanks so much for any help and/or advice you care to give.

    Annie

  • Rainenz
    Rainenz Member Posts: 93
    edited February 2008

    Hi Annie

    I was dx with a medullary BC 11yrs ago had lumpectomy followed by 6 AC and rads. Have had no further problems in that breast , but was dx with IDC in other breast July 06 and this time had 4 FEC and 6 Taxol.  So far am NED and hope to stay that way.

    I was triple neg both times. 

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited February 2008

    Hi Rainenz,

    There sure don't seem to be very many of us. You, me, and then Shirlann is the third. I wonder why it's so rare -- do you know anything about this variation of BC?

    Hugs to you and the koala bears,

    Annie

  • vickic3
    vickic3 Member Posts: 1
    edited February 2008

    Hello,  I have been a member for some time but this is my first post.  I was diagnosed with Medullary carcinoma in situ (Triple negative) in April 2006.  I was 34.  From what I know these cancers are unusual (about 5% of all breast cancers) and tend to be very aggressive.  On the plus side my specialists were excited because they also respond very well to chemotherapy.  I underwent a lumpectomy, 6 cycles of FEC and 35 radiation sessions.  Am coming up to my 2 year anniversary but will be more excited about my 3 year anniversary

  • mags
    mags Member Posts: 233
    edited February 2008

    Hi ladies, I had medullary bc three and a half years ago. I find it quite confusing as even though I heard that it is aggressive I also read that it doesn't tend to spread. I did lumpectomy - I had no node involvement- then 30 rads. I was er+ so I'm on tamoxifen now. Also had periods shut down for two years with zoladex. There seems to be very little information on it.

    Hugs

    Mags 

  • karenann
    karenann Member Posts: 70
    edited February 2008

    Hi,

    What I have heard about Medullary bc, is that it tends to not spread as fast as other bcs, but if it does then it is harder to treat. 

    Karen 

  • chumfry
    chumfry Member Posts: 642
    edited March 2008

    My 2005 tumor was medullary. I also was told they are aggressive (grow really, really fast) but tend not to travel. My 2007 tumor in my other breast was IDC, so it definitely hadn't traveled from my 2005 tumor. My onc called it a "second primary," in that it wasn't related to my earlier tumor at all! I think medullary's are always triple-neg, and my IDC tumor was triple-neg, too.

    I had mastectomies both times, so no rads. But I had chemo both times. (AC/Taxol in 2005 and carboplatin/taxol in 2007) I'm hoping I'm all done with BC since I'm now all out of breast tissue! LOL

    --CindyMN

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Thanks so all for your explanations. Even though mine is medullary, it had spread to lymph nodes in axilla. I guess the delay in diagnosis was just a bit too much.

    Hopefully we can all beat this monster. Have a great weekend all!

    Hugs,

    Annie

  • Labgal
    Labgal Member Posts: 62
    edited March 2008
    I was diagnosed with atypical medullary (had almost all of the qualifications for pure medullary but not quite) three years ago. Stage one 9mm tumor.I had a mas with tram recon. Had 4 A/C and still cancer free!Laughing Medullary is rare and is alomst always triple neg and a grade three tumor. It has a large layer of white cells that surround it and some theories say this keeps it from spreading as fast.
  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Hey Cathy,

    So good to hear from you! What are the differences between typical and atypical medullary? I'm afraid to ask which mine is, but guess I will eventually. Better to battle the beast one knows than to strike out in the dark.

    Hugs,

    Annie

  • pattypoo53
    pattypoo53 Member Posts: 46
    edited March 2008

    Hello

    I was also diagnosed with an atypical medullary in Dec 03, stage IIA ,no nodes ,no vascular invasion ,2.8 cm, triple negative, no multi focal, I didn't meet the criteria for a medullary. I did 4 AC and 4 Taxol and 33 rads. Over four years out and doing great. I don't post alot but had to chime in on this one.

    Patty

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Hi Patty,

    So good to hear from you. I really wish someone could fill me in on the differences between typical and atypical medullary. I've been searching the Internet and my university library frantically over the past three weeks, but either can't get the information, or perhaps don't recognize it if I am running across it. And, of course, if I don't recognize it, I don't understand it either.

    Help?

    Also, can either or both of you tell me what your treatment has been?

    Annie

  • tornadogirl
    tornadogirl Member Posts: 133
    edited March 2008

    http://www.google.com/search?hl=en&q=medullary+breast+cancer&btnG=Google+Search

    There is a lot of information on Medullary, Atypical Medullary and "similar to" Medullary breast cancer.

    If I were you I would get a copy of your surgical report and your path report, sit down for about three hours and read it and compare it to the research here on Google. You CAN learn what these big words mean even if you look 100 of them up in a dictionary as you are reading them.

    Don't underestimate your ability to LEARN! I did it, you can do it too. Pretend you have to interpret your path report to someone else.

    Pretend you are a biology student learning about Medullary breast cancer so you can teach it to others.

    YOU CAN LEARN EVEN IF YOU HAVE TO READ AND LOOK UP THE DEFINITIONS OF EVERY OTHER WORD, LIKE I DID WITH MY PATH REPORT!

    You will feel better knowing MORE....at least I know I did. I still pull my path report out and study it occasionally even after 2.5 years of my diagnosis. I have triple negative breast cancer, poorly differentiated with some Medullary features. 

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Thank you, TornadoGirl. I appreciate the input. Smile

    Best,

    Annie

  • tornadogirl
    tornadogirl Member Posts: 133
    edited March 2008

    Yes, welcome! I said I have BC, but hopefully I can really say "I HAD BD! since i went thru treatment...

  • joykeeperorg
    joykeeperorg Member Posts: 154
    edited March 2008

    Im apart of some many different groups on here is ridiculous :) Stage III, Triple Negavtive, Young (dx at 23), and Medullary Carcinoma! Did 4 AC and 4 Tx bi lat mast and going through 6 wks of rads

  • arc229
    arc229 Member Posts: 88
    edited March 2008

    count me in! I had a 2.5 cm atypical medullary cancer lumpectomy in July, 2006. 4 AC + 15 rads (double dose), finished 1/07.  Medullary is named for its appearance under the microscope, looks like brain tissue, big source of jokes for my husband & me (where exactly my brains are located....)

    best,

    amy

    weebles wobble but we don't fall down.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Hi Tornado, Joy, and Arc,

    Thanks to all three for your input. I'm asking because it seems to be such a rare subtype of BC that I wonder if treatment options for us have been completely explored. They seem to lump us in with all tri negs, and to my understanding there are important differences between medullaries and metaplastics, for example. I'm wondering if anyone's doctor mentioned those differences, and what we can expect from them.

    Joy -- you're in my favorite city! I love San Antonio. I see you're also a service person. Thanks from all of us for everything you brave people do for us every day.

    Love,

    Annie

  • joykeeperorg
    joykeeperorg Member Posts: 154
    edited March 2008
    Yes I was moved here by the AF cause of cancer so I could be with my family! I like S A to :)! No need to thank me ma'am just doing my job! I think the Marines and Army deserve more of a thanks! I do appreciate it though! Laughing
  • chumfry
    chumfry Member Posts: 642
    edited March 2008

    Annie, I've gotten all my treatment at the Mayo Clinic and my onc said in 2005 that the treatment for medullary was basically the same as for IDC. I got dose-dense 4xAC, 4xTaxol. I don't think that has changed. Because medullary is so rare, they do less research on it. But I do know that chemo is supposed to work very, very well on triple-neg cancer. So that's comforting.

    --CindyMN

  • Labgal
    Labgal Member Posts: 62
    edited March 2008
    The differance between typical and atypical medullary comes in the path report. The college of american pathologist came up with a group of defining factors for medullay bc. The tumor has to meet all these factors for it to be pure medullary. If it only meets some it is called atypical medullary. Most of the time they are treated the same as regular breast cancer. True medullary bc usually does not spread as fast (even though they are almost always grade 3 tumors) as other breast cancers and if caught early have a cure rate of almost 98%. This is due they think to the wbc layer that surrounds it. It holds it in longer. Get your path report. It should tell all of this. Also google medullary. You can find the factors for diagnosis pure medullary verses atypical. I work in a hospital lab and our pathologist (Md who reads and diagnosis the tumor) confirmed all of this for me when I was diagnosed. Mine had a dense wbc layer surrounding it and although it did not meet all factors and was diagnosed and atypical medullary, I am counting on those little wbc cells and that they kept mine from spreading..Wink 
  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited March 2008

    Thanks, Cathy,

    I'd meant to get my path report some time ago, but have been feeling punk and also had my sick mother with me, so haven't gotten around to it yet. I'm hoping mine is pure medullary -- it was associated with a huge (and I mean huge!) axillary lymph node which might (I'm hoping again) indicate a massive immune response to the cancer. From what my breast surgeon said, such an immune response isn't typical -- even when nodes are involved, that's usually not evident except through histological examination.

    Thanks to all. I wish us all a really speedy and complete recovery. This journey is a bitch, isn't it.

    Hugs,

    Annie

  • foxiegrandmother
    foxiegrandmother Member Posts: 1
    edited May 2008

    Was diagnosed with medullary bc in Sept. 1992. Nodes were all clear.  Had a modified radical mastectomy and that's it.  I'll be 51 in June.

  • itsnotfair
    itsnotfair Member Posts: 1
    edited June 2008

    I am a newbi- diagnosed very recent and had surgery also for lumpectamy. I do not know what stageits in but am curious of treatments.

  • Dragonfli
    Dragonfli Member Posts: 50
    edited June 2008

    I am glad I came across this post.

    My 1st pathology report was sent off for a 2nd opinion because of this very reason, in 2003.

    Diagnosis is an IDC Grade 3 ,

    Measures 2.7 cmX 1.8 cm Tumor Extends within 0.5mm of inked resection.

    Sentinel lymph node negative for  carcinoma,

    Tissue from left axilla-Metastatic Adenocarcinoma in 1 of 6 lymph nodes measuring 1.4 x 1.0 cm

    Comment from my 1st pathology report:

    This tumor has features of medullary carcinoma which would be expected to have a better prognosis then a high grade infiltrating ductal carcinoma. However, this tends to be a rather subjective diagnosis and considering the significant degree of prognostic implications between these 2 lesions, it will be forwarded to Kelowna for further review.

    2nd Path report comment:

     (very lengthy & detailed, I have shortened the comments).

    I agree with you that the tumor shows some features suggesting a medullary carcinoma (cynctial growth, high grade nuclei with brisk mitotic rate).However the diagnostic features of meduallary carcinoma are not fulfilled by this tumor. 

    Specifically, there is too much irregularity and infiltration at the tumor margin,(which should be smooth and rounded in a medullary ca) and there is not enough lymphoplasmacytic infiltrate(which should be diffusly present throughout the lesion, but if not, at least completely around the perimeter of the tumor).

    This could be an "atypical medullary carcinoma" or an infiltrating ducatal carcinoma with medullary features, neither of these 2 designations is helpful clinically , tumors such as this should be considered a high grade infiltrating ductal carcinoma Nos.

    A.Sentinel node - One lymph node negative for metastatic carcinoma

    B. Remaining axillary lymph nodes:

    i.One of five positive for metastatic carcinoma measures 1.4 cm

    ii.Another one of the five nodes shows a rare atypical subcapsular cells. Suspicious for micrometastasis(please see above).

    Seems like the 2 types can be easily confused and or can even have cross over charactertistics in 1 tumor. Either way, I feel my treatment worked, and I generally feel great, with the exception of this awful puffiness, and argggg the post menopausal,post chemo weight gain ( 30ish lbs).

    Hugss to all

    Barb

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited June 2008

    Hi Barb,

    Thanks so much for your post. Yes, I'm discovering how difficult it apparently is to categorize a cancer as medullary. I'm a little confused about your first path report -- was the cancer in your axillary node of a different type than that in the primary tumor? If you know, please let me know. My doctors and I have been confused by the difference in response to chemo between my breast tumor and the lymph node known to also be cancerous. Could they possibly harbor different malignancies? It seems unlikely, doesn't it, but I'm at a point where I'm ready to explore the most nebulous hypotheses.

    Can I ask what treatment you got? I'm floundering about right now, wondering if I should stick with my clinical trial (I didn't respond to Taxotere), or request an alternate regimen. It would be useful to hear what was effective for you.

    Thanks again, Barb. I really appreciate your post.

    Hugs,

    Annie Camel Tit

  • Dragonfli
    Dragonfli Member Posts: 50
    edited June 2008

    Hi Annie,

    As far as I know, my breast tumor and the lymph node had the same "type" of cancer. I think the cells in my lymph node were looking like  cells that have "bought a passport to travel through my body". so chemo was not delayed, and started even though my margins were not clear.

    I do know that being 41, pre menopausal and ER negative dictated my chemo regime to be FEC( Fluorouracil, Epirubicin( sister drug to Adriamicyn) & Cytoxan. The Neupogen was to keep my WBC(actually the Neutrophils) up so that I could stay on target, and not miss or delay any treatments.

    I also had radiation, and after rads, that was it for me since I was a triple neg. No after meds, except Calcium & Vit D.

    From what I understood when I was diagnosed, if you are offered to take part in a clinical trial, do it. Apparently those patients in clinical trials are followed more closely after all treatment. It's not a biased follow up, but rather for scientific data to include into the trial results for a year, 2 years, even 10 years later.

    Where are you in your course of treatment? Some of my treatment might be different as I am in B.C. Canada.

    Hugs

    Barb

  • murph2270
    murph2270 Member Posts: 1
    edited August 2008

    I too am atypical medullary, diagnosed if 2/08. had 4AC and 4 taxol. Started radiation on Tuesday for 33 treatments. Very confused with typical/atypical. Does atypical not spread a quickly as reg. bc like typical? Eileen

  • Shirlann
    Shirlann Member Posts: 3,302
    edited September 2008

    I am Medullary, and at UCLA, they said it was named that because it looks like brain Medula tissue.  Of course, it has its own characteristics too.  Almost always aggressive, but more stationary.  That is funny, huh?  Oh well, I am coming up on 10 years and since I am also a TriNeg, I hope this one is history.  But who knows what else lies in store?

    Barb, mine was 7mm, so I just had a lumpectomy and rads.  Now, I hear, 10 years later, they always do chemo for TriNegs.  Back then, no one seemed to know much about TriNegs.

    Hugs, Shirlann

  • MsBliss
    MsBliss Member Posts: 536
    edited December 2009

    I would like to add my experience too.  I was dx with IDC which had medullary features.  It was so hard to get a straight answer that I had 3 additional pathology studies done and one extra consult done.  I also did a lot of research on my own and learned quite a bit.

    For the purposes here, Atypical is AMC, True or Typical is TMC.  TMC is very difficult to dx even with the 5 Ridolfi criteria because of observer or intraobserver variability.  One path might say no there aren't enough infiltrating lympocytes, while another would see a robust grouping--and depending on whether they study the whole tumor block or slides alone, the picture will be different.  Also, pathologists are inhibited from calling a tumor TMC because of fear of undertreatment.  Many women under treated in the past and that is not the "cover your ass" way of doing things anymore.  Paths would rather be conservative on the issue, understandably. 

    TMC does not always appear to look like the medulla--it sort of does, but not all of the time.  Also, if it is TMC and your nodes are clear with no LVI, you do not need chemo or rads--just surgery.  TMC is 99% of the time triple negative--if you have any ER positivity, then it is not TMC.  It would have to be truly physically textbook to be ER Pos and TMC, but they are very rare and the incidences of those rare cases have been attributed to testing error of receptors.

    A very thorough Danish study indicated that some AMC are just as favorable as TMC IF they have at least some significant synctial growth pattern and diffuse moderate or marked mononuclear infiltration (lymphocytes, macrophages). This study said the Ridolfi criteria are far too narrow and do not reflect features that confer favorability. When they broke down each individual case, the two features of synctial and lymphocytes were the lynch pins of favorability.

    The Ridolfi criteria are easy to look up so I won't reprint them here--but as I said, there is some controversy about the issue.

    So, if you have AMC,it actually depends on which features you have that you might be able to confer some favorability.  However, chemo status wise, no onc will give a pass on chemo and rads unless you have the TMC label.

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