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Medullary features

Penguin688
Penguin688 Member Posts: 3

Hi

I'm receiving chemotherapy (TC) for a 11mm, node negative, grade 3, triple negative breast cancer with medullary features. Two pathology reports concluded that the tumour was 'probably' medullary, with chemotherapy and most likely radiotherapy advised as adjuvant treatment.

As this is such a rare cancer, there seems to be few with this sub-type - anyone else out there out with a similar diagnosis??

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Comments

  • moderators
    moderators Posts: 7,685
    edited March 2013

    Hi Penguin,

    While you wait for others to post with their experiences, you may be interested in checking out the main Breastcancer.org site's pages on Medullary Carcinoma, for information on treatment and follow-up care.

    In addition, you may want to do a search on the boards (in the blue navigation bar on the left of the screen) for the keyword "Medullary" to find others with a similar diagnosis.

    Hope this helps!

    --The Mods

  • Morgan513
    Morgan513 Member Posts: 303
    edited March 2013

    Hi Penguin,

    I'm a medullary too.  I'm a few weeks away from my 5 year anniversary!  I had lumpectomy, TCx4 and radiation.  

    There are not many medullary women here but I know of a few that are many many years out!

    Best wishes,

    Lorrie

  • Penguin688
    Penguin688 Member Posts: 3
    edited March 2013

    Thanks for the the reply, Morgan 513 - there are certainly not many back in the UK.

    Congratulations on your upcoming anniversary. I see that you received the same treatment as me and it worked! I was also told by some specialists, although not all, that this was a 'favourable' sub-type. Just hoping that this is true...

  • Moonflower83
    Moonflower83 Member Posts: 8
    edited March 2013

    Same here.

    I had IDC with medullary features. Size was 1cm x 2 cm, no nodes involved. I had lumpectomy in september 2011, then 6x TEC chemo from october 2011 to january 2012. Then 7 weeks of radiation ( 30+ 6 boosts) and I´m on Tamoxifen and Zoladex/Trenantone since february 2012, because "my" cancer was er+ and pr+ and I´m very young (28 when diagnosed).

    I have done genetic testing and I´m negative for brca1,braca2, chek2 and rad51c.

    I´m from Germany and was treated here.

    I heard, that there is a study in switzerland for medullary ca and ca. with medullary features which says, that chemotherapy is not always necessary for us. But I did it and my doctors wanted me to do it because of my age.

    Wow, Morgan, 5 years! That is great.

  • Kruise
    Kruise Member Posts: 242
    edited May 2013

    Hi Penguin - I have just signed up for this site today. I was also diagnosed with bc with Medullary features. I see that this type of cancer has a greater chance of being linked to the BRCA1 & 2 genes. I have been to see genetic services and hope to be tested for these genes in the near future - my mother was also diagnosed with bc at a similar age to me and passed away five years later. However she wasn't treated with the same treatments back then that I am being given. There is no one else in the family with a history of breast cancer. The docs call my breast cancer a Triple Negative Breast Cancer but I did test weakly positive for a Progesterone receptor.

    I didn't realise that having a "medullary" type of cancer was rarer - but my specialist also did tell me that even though it first appears aggressive as a Grade 3 - it really becomes a lower grade cancer - something to do with the bodies own antibodies being in amongst it trying to fight it.

    I am currently undergoing chemotherapy - have my fourth and final AC treatment this coming Friday - and then onto 12 weeks of Paclitaxel after that, followed by radiotherapy. It is going to be a long year!

    Karen

  • Penguin688
    Penguin688 Member Posts: 3
    edited May 2013

    Hi Kruise

    Just thought I'd pop back to this forum, and saw your post. It seems like your family history is exactly the same as mine. I was referred for BRCA1/BRCA2 testing because of the triple negative aspect of medullary breast cancer and the fact that my mother also had breast cancer in her 40s - sadly, she passed away in her early 50s but, like your mother, was treated very differently. My results from the genetic testing have just come back as negative which I find quite surprising as I was convinced I had the gene mutation.

    I have finshed chemo and am now deciding whether to have a mastectomy or radiotherapy - at the moment, I keep changing my mind. My consultant thinks we have 'overtreated' the cancer, as the pure type does not require chemo. I had a couple of pathology reports from different hospitals as I was not offered chemo initially. It was then decided that  the cancer was 'probably' medullary - although definitely had the main medullary features! All very confusing!

    Anyway, I hope your side effects are minimal for the remainder of your treatment.

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2013

    I was tested for BRCA1 & 2 and I'm negative also.



    Lorrie

  • Shirlann
    Shirlann Member Posts: 60
    edited June 2013

    Hi sisters, I am a 15 year Medullary Triple Negative survivor, so keep up all your hopes, I am just fine.

    Gentle hugs, Shirlann

  • Kruise
    Kruise Member Posts: 242
    edited June 2013

    Hi again ladies -great to see your posts on here since I first logged on. I haven't checked since then as still getting over chemo but starting to feel better. Interesting Penguin that you came back negative for the BRCA genes. I guess like you I am expecting that I would be positive - so I guess I must not worry or cross that bridge until it happens. I was told that there are three outcomes from the testing - 1) a positive result for BRCA 1 or 2; 2) A negative result and; 3) an abnormality found but no info on what that may mean.



    I wonder if you have decided on mastectomy or radiation yet. I often wonder if I should have gone for mastectomy but went with what breast specialist/surgeon suggested. I was having annual mammograms and yet I found the lump myself as it grew in between times. Does make me wonder how super fast and aggressive the type of cancer really is.



    It is great to see you are doing so well Shirlann 15 years later. Thanks for posting that. It is SO good to hear stories like yours. Did you have any lymph node involvement? What check ups do you still get. And finally did you change any lifestyle factors at all? Sorry for all the questions :)

  • pc711019
    pc711019 Member Posts: 1
    edited June 2013

    Hi all, I too am a triple negative Medullary breast cancer survivor. I was diagnosed in May 2011 and had a bil mastectomy with expanders July 5th 2011. I was a stage 1 grade 3 with 0/5 lymph negative. I had 4 chemotherapy treatments of TC and no radiation as I elected to have the bil mastectomy.  I did not want to risk going through surgery and chemo again if I could avoid it. My oncologist is at Siteman in St. Louis, Mo. and he said I could forego chemo but it was my decision. I decided to do everything I could the first time around to get it done. My baby sister died of a leiomyosarcoma of the uterus and I didn't want to deal with anything else if I could avoid it. I am a nurse and my daughter is a nurse, so after a discussion with my husband and children we came to the above treatment.  Cancer, any type affects your whole family.  I hope everthing goes well for all of you, but if I had to have cancer, I am glad it was this type.  Blessings to all!

  • MsBliss
    MsBliss Member Posts: 62
    edited August 2013

    I had medullary features which the tumor board at the hospital said were absolutely not a qualifier towards being a "true medullary" case.  Now, four years later, those guidelines are somewhat different.  I did not do chemo or rads--still kicking with no evidence of disease.  I also tested BRCA negative.  I lost my sweet mom to bc five years after she was diagnosed, but we do not know what subtype she may have had.

  • BanR
    BanR Member Posts: 238
    edited February 2014

    just chiming in.. i am triple negative with medullary features too. they called it atypical medullary carcinoma. 

  • mg23
    mg23 Member Posts: 2
    edited October 2014

    I was diagnosed with TNBC with medullary features on September 19, 2012.  I received weekly chemo (clinical drug...I Spy 2 trial with paclitaxel) for 8weeks (4 weeks shy of 12 due to tumor growth).  It was then followed with 4 bi-weekly A/C (red devil) chemo treatments....HORRIBLE but I got through it!  Tumor shrank to the point of it not being detected. I received a lumpectomy, 16 lymphnodes removed, and received 34 (last 6 of those were booster rads to center of chest--target internal mammary nodes) radiation treatments later on.  It had spread to my lymphnodes and internal mammary nodes prior to treatment as well.  I completed treatment June 26, 2013.  I have been in remission since.  I hope all is going well for you.  Please visit the TNBC website as well...tons of support and information.

  • NATSGSG
    NATSGSG Member Posts: 64
    edited June 2015


    hello ladies:

    Hope this message find everyone well and recovering....just stopping by to share this link below that provides scientific articles of Medullary Carinoma of the breast which I hope will be of use to you. May need to sift through the titles to find the ones that are pertinent. Just listed in another thread of the same subject, but thought I'll copy and paste it to make it more convenient for you.

    http://www.ncbi.nlm.nih.gov/pmc/?term=Medullary+Carcinoma

    In the meantime, if you are interested to find out if there are immunotherapy treatment being used to treat Medullary Carinoma, then consider visiting the Society for Immunotherapy of Cancer (SITU) to find out if there has been any use of immunotherapy to treat it, or perhaps requesting to be on their mailing list to keep you updated of any new developments? 

    http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps 

    P.S.

    Below VIDEO link talks about the use of immunotherapy in cancer treatment (current hot cancer treatment topic) and fascinating to watch.

    http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

  • Starwater
    Starwater Member Posts: 1
    edited September 2015

    Just adding my two cents worth: I was diagnosed with a medullary carcinoma triple negative stage 1 <2 cm tumour following a lumpectomy in July 2015. I have turned down an offer of chemo (I garden spray free, eat organically, and don't take prescription medicines--why would I deliberately choose to poison the ecosystem that my body? Especially given a cancer type that seems to be responsive to the body's immune system, see http://breast-cancer.ca/med-carc/ ). I am (somewhat reluctantly) starting a 4-week course of radiation later in September--my surgeon, the oncologist, and my husband were all pretty adamant about that, less pushy about the chemo. Will keep you posted on progress and thoughts. I think this is an interesting type of cancer that doesn't fit the usual breast cancer profile and I wonder if the one-size-fits-all approach to breast cancer treatment (cut/poison/burn) makes as much sense here as with other cancers, particularly at Stage 1. Some information I've found suggests that although medullary cancers look like grade 3 cancers and are identified as such, they don't tend to act like them. I'd welcome others' thoughts on this.

  • moderators
    moderators Posts: 7,685
    edited September 2015

    Starwater-

    Welcome to BCO! We hope you find this community to be supportive and informative. Thanks for sharing your experience. This is an older thread, so you might not get the feedback you're looking for. We would suggest doing a site search (search function is in the blue menu on the left) for "medullary" to find others with the same dx, or start a new topic in this forum to generate a new discussion based on the interesting information you shared with us.

    Please let us know if we can be of any assistance!

    The Mods

  • Aidinmom
    Aidinmom Member Posts: 1
    edited October 2015

    Me, I have the same thing. My tumor was 5.5 mm

  • moderators
    moderators Posts: 7,685
    edited October 2015

    Welcome Aidinmom! This thread is a little old. If you want you can also start your own thread and explain your particular situation to others. Let us know if you need help with that, we're here for you!

    The Mods

  • Eibra
    Eibra Member Posts: 15
    edited July 2016

    hello ladies any updates ? We need a more medullary survivor , just diagnosed and started chemo lil scared ..

  • Kruise
    Kruise Member Posts: 242
    edited August 2016

    hi Eibrahim - hope you are doing ok? It's normal to feel scared. Iam 3 years 7 months out from my diagnoses. Still doing good.

    I don't think this thread is active now - but as the moderators said above you can start your own new one.



  • Eibra
    Eibra Member Posts: 15
    edited August 2016

    hi Kruise i hope you are doing well :) , im doing okay after first cycle , i hope that specialy our type is very rare , thank you for your kind reply xo

  • kristyf
    kristyf Member Posts: 1
    edited August 2016

    Anyone have triple positive medullary carcinoma?

  • Amy37
    Amy37 Member Posts: 1
    edited August 2016

    Hello I wanted to know how everyone was doing. I was just diagnosed on Aug. 11, 2016 with breast cancer stage 2 they called invasive carcinoma with medullary features. I had a lumpectomy back in July and after my pet results came back it shows a little in one of my lipnodes so i have to have another surgery along with 4 weeks of chemo and 12 weeks of radiation.

  • Eibra
    Eibra Member Posts: 15
    edited August 2016

    Hello worrior , we will fight , we just started , im done eith second round Ac , i want to ask also if any one did a genetic test ? I did and im negative to brcaas , and i dont have family history , but it came like un known likely benign issue in CDH1 gene , anyway we have to fight and keep praying and be strong we will face it together xo

  • Eibra
    Eibra Member Posts: 15
    edited November 2016

    any medullary warrior


  • Desirr77
    Desirr77 Member Posts: 12
    edited December 2016

    Hello from Germany!

    I was daignosed in February this year with a carcinoma of no special type with medullary features (6mm, G3, no nodes involved). While doing research on this topic, I found your community.
    The medullary features of my tumour led to genetic testing and I came back with a positive palb2 mutation.

    I do not have all medullary features: only focal pushing borders and only a small amount of syncytial growth patterns. But I do have a dense lymphocytic infiltrate peripher and within the tumour, high pleomorphism and no tubular formation. I am wondering now, if I will also benefit from a more favourable prognosis. I did chemo until August (4x EC and 12x Paclitaxel) and a bilateral mastectomy in September due to the genetic problem.


  • Eibra
    Eibra Member Posts: 15
    edited December 2016

    helo Desi , our type is very rare its 3 % only , it's actually have a better prognosis than the invasive breast cancers , we will go through this

  • Desirr77
    Desirr77 Member Posts: 12
    edited December 2016

    Dear Eibra,

    so glad you answered me! Is your tumour true medullary? And how is it treated?

  • Eibra
    Eibra Member Posts: 15
    edited January 2017

    its Medullary feature , stage 1 , i did lumpectomy and chemo 4 AC , 4 docetaxl and I'm doing radiation those days , almost the same as yours , im 31 yrs with no family history and i did brca test and its negative, what about you

  • Shirlann45
    Shirlann45 Member Posts: 2
    edited January 2017

    Hi gals, I am 20 years post Medullary BC. Doing just fine. Gentle hugs Shirlann