invasive tubulo lobular-anyone out there?

treetop
treetop Member Posts: 37
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi,

 I was diagnosed with tubulo lobular carcinoma on 12/8/2008. The pathology report does say it is LCIS. However the percentage of lobules is less than 5%, and is contained within the main tumour mass... for both tumours. My Nottingham score was Grade 2, 6..... 3 for tubules, 2 for nuclei, 1 for mitoses. I had two primary tumours 11mm and 12mm which were both excised with lumpectomies from the left breast. Two different sites. My BC sugreon said fortunately I have generous breasts.. so much nicer than saying large or big!! There are good clearances around both tumours.

O/2 nodes tested negative with extensive testing done up to 10 days after the excisions.  I am strong HR positive but E cadherin negative.

I started arimidex on the 1/1/09 and have had 8 of 30 rads today., started 1/21/09 I would love to know if there is any one else out there with tubulo lobular cancer. I understand that only about 2% of this type of cancer is present in breast cancers, and that it has favourable prognosis. There does seems to be conflicting advice whether to have lumpectomies or mastectomies.

Anyway it would be great to find some others who have similar diagnosis, even if in the past and what their treatments were. Any recurrences etc.

many thanks

treetop.


Dx 12/8/2008, LCIS, 2 x 11mm, Grade 2, 0/2 nodes, ER+/PR-, HER2-

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  • treetop
    treetop Member Posts: 37
    edited February 2009

    Thanks Sherri G,

    So much for responding.. yes I was very fortunate.. My endocrinologist checked my breast three weeks before, didnt find anything..... I had a routine mammo three weeks later, which took forever as they kept on going back to the spots to make sure, then i had an ultrasound immediately, things still looked dodgy so I had two core biopsies and got the results back on the 8th dec, had lumpectomies on the 18 and then waited the 10 days, day before xmas before getting the definate negative nodes results back. Must admit i cried lots and lots before the final "good news" doesnt everthing get relative when beating a disease like this?  Because everything has happened so quickly I am still coming to terms with things.. From the forum I have learnt so much, want to find out my oncotype, if I am having any boosters etc. Also I dont have any family left, only DH and two daughters.. both live  a long way from me.. so friends and dh are my best support. and this site.

     best of luck to you and all the others out there for no recurrences..

    hugs 

    Treetop

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  • ann-idiot
    ann-idiot Member Posts: 128
    edited February 2009

    I'm new to this discussion board, glad I found you. in july 2008 I was diagnosed with tubulolobular as well. 1 lymph node a wee bit involved. Had a lumpectomy the end of Sept. and am on #30 of 33 radiation treatments. I'd like to go straight onto the tamoxaphin (i'm sure that's spelled wrong) because ILC seems to respond to the hormone therapy more so than chemo. HOWEVER, my onco wants to start chemo (4 doses of TC) in early March, due to the fact that it was multifocal. Not sure if I'm on board with that or not. TC treatments can cause leukemia. Even tho I'm premenopausal, I demanded they give me the oncotype dx test, which gave me a score of 11. Is chemo even worth the side effects for me? Wish I knew a really awesome oncologist.

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  • nash
    nash Member Posts: 2,600
    edited February 2009

    Ann, with an Oncotype of 11, I'd think you'd be fine with Tamoxifen. Don't know how much the multifocal issue plays in to things, but the idea of adjuvant treatment is to kill any stray cells, and the idea of Oncotype is to find the best means to do that. A low score like 11 indicates that your tumor(s) are very sensitive to hormones, and thus should respond well to HT.

    Just a question, though--when the tumor is multifocal, do they send samples of each site in for Oncotyping?

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  • priz47
    priz47 Member Posts: 470
    edited February 2009

    No they only send one sample d/t expense. At least that is what I was told. Mine is also tubulo lobular. My Onco type was 16 and I did do chemo. I thought it was best for me and finished chemo in December. It was hard at the time, but to me, worth it! because of the multifocal, I had a mastectomy after no clear margins with the lumpectomy. The journey continues...

    D

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  • nash
    nash Member Posts: 2,600
    edited February 2009

    Thanks, priz. That's interesting. Maybe that's part of the reason Ann's onc is saying chemo for multi-focal--the Oncotype score may not be as significant if there is only one sample.

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  • treetop
    treetop Member Posts: 37
    edited February 2009

    hi Anne.   sorry cant called you an idiot.!.. Just check my facts above and see how many relate to you,, I am postmenapausal so am on Aridiidex.. The Onc and breast surgeon didnt feel it was nec to do an oncotype as it was caught so early  stage i.. I disc. recently that because my tubules count was 3, this was very very good... Sorry dont ask me why.. It is a bit like having a strong progesterone.oestrogen, Mine were 5 and 6 out of 6, hence the aridimex.. Also my lobular was less than 5% of the mass, and I have very good clear margins..  the surgeon took huge pieces out.. like 40 x 45 x 25deep and 50 x 45 x40 deep!! Yikes... But I have generous breasts so it is not too bad..

    All those things help in treatment. Also tubular is a very slow growing cancer, so that is another good thing.  At the moment it looks like I will have an annual checkup with a mammo and an ultrasound each time.. I can live with that.. Chemo would be tough.. am so pleased that I didnt have to do that, but each case is different, so check your scores against mine and PM me if you want.

    i am having 25 rads and then 5 boosts over the scars.. am currently on no 15... so getting there.

    All the best

    treetop

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  • treetop
    treetop Member Posts: 37
    edited February 2009

    Hi Ann,

    the "flash came back" both my tumours were primaries.. another reason for not going chemo. From what I have read very very few tubulo ever have chemo.. You could always get another opinion in another town? or medical centre?

    take care

    treetop

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