tubulo lobular carcinoma

treetop

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, one for mitoses.  I had two primary tumours 11mm and 12mm which were both excised with lumpectomies. 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. Neither tumours are invasive.

 I started arimidex on the 1/1/09 and have had 7 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

many thanks

treetop.

Anonymous

treetop---I'm curious, did they call the tubulo lobular bc invasive? The grading, the radiation and the AI would make sense then, as none of those things are generally used for the treatment of LCIS by itself without an invasive component.

treetop

Hi Bkc,

 lets see if this post works this time.. Ok re the tubulo lobular carcinoma.. I think I must have looked at the sentinel nodes pathology which said they were both non invasive

Tumour one was at 10 o'clock tumour type T,L carcinoma. size 12mm  Nott grade 2....3 and 2. and 1.LCIS of normal type is unidentified and comprises less than 5% of the tumour and is contained in the tumour mass.

A piece of breast this size was removed..  50mm from medial to lateral,50mm from superior to inferior and up to 40 mm in depth ( does this mean 50 x 50 x 40? seems huge)LCIS of the normal type is seen and is less than 5%  and is contained within the main tumour mass. Vascular invasion. Not seen.

 Second tumour.. The 3 0 clock one. 45mm from medial to lateral,40mm from superior to inferior and up to 25mm deep..  firm white fibrous tissue, shows benign breast changes inc mild epithelial hyperplasia cyst formation and apocrine metaplasia, no evidence of invasive or in situ carcinoma. This would add approx a further 10mm to the deep margin. Tumour type TLC. Nottingham grade 2... 3 2 1  LCIS of normal type is identified and comprises of less than 5% of the tumour and is contained within the mass.  This tumour was 11mm

Does all this make sense to you?. If so please explain.... I understand that because both my tumours were primaries, and because lobules can spring up anywhere, that that is why I am on the radiation on left breast only, to catch any little cells, The arimidex will counter the strong Oestrogen positive that I have and hopefully stop anything appearing  in the the right breast.

 Anyway I would be interested to know what you think?  or any explanations you can give..

All the best tree top 

leaf

Tubulolobular carcinoma is a type of mammary carcinoma that displays an admixture of invasive tubules and lobular-like cells.http://www.ncbi.nlm.nih.gov/pubmed/17143261

http://www.pathologyoutlines.com/breastmalignant.html#tubulolobular

Your report says "Tumour type TLC. "  I'm sure this stands for tubulolobular carcinoma.

I think you have tubulolobular carcinoma with additional LCIS.  This pathology outline says it is common to have tubulolobular WITH DCIS or LCIS. http://www.pathologyoutlines.com/breastmalignant.html#tubulolobular

It says "carcinoma", not " carcinoma in situ" so I don't think this is some new, strange type of in situ cancer. 

So they would be treating for the tubulolobular, not the LCIS.  

Look at a ruler-50mm is 5 cm.  To me, it sounds like PROBABLY the dimensions you are talking about are the size of the pathology sample, in other words, the size of the piece of tissue that was removed, not the tumor size. 

 Sometimes I think the pathologist has trouble with English. In my pathology report, they put the final diagnosis in caps at the top.  Is this the word-for-word, entire pathology report?  I had a 'summary' section too.

treetop

Hullo Leaf,

Thanks for the information.. though I must admit to being a little more worried...understatement! I do know that my tumours are both E Caderin negative,  are 11 and 12mm  big,  and have less than 5% of lubular cells in both tumours.  The path stuff that i quoted was direct from the report.

Other online sites that i have found say that TLC. is only present in about 2% of breast cancers. and the outlook is favourable.. Both my BS and Rad Onc have said this.. So it was a bit disturbing to see that one of the site you mentions said that is can be an aggressive form of cancer.. I think they said this because these cancers have E cadherin complexes in them , which neither of mine does. 

 I must admit when I saw the sizes of the pieces taken out, I was horrified... just as well that i am a 16DD.. The tumours are on the armpit side so the loss barely shows.. The only time I have been happy to have big boobs.. Once upon a time they were 34b!!!  and I havent put on that much weight.. Desp. trying to lose the 5 kg that I need to..!

 I couldn't access the pathology outlines website, my computer is old and running out of memory.. or whatever they call it... and it wouldnt allow me to scoll down any further than the diagram.

anyway thanks for your input, and if there is anyone else out there who has had a similar cancer/grading / treatment etc. I would love to hear from you.

all the best to everyone as we start the drag on another week.!

hugs

treetop.

leaf

 I have several 'unusual conditions'.  Probably different sources will have different opinions, because it is unusual. Here's what the pathology outline says:  (the formatting will probably be horrible, so this may be hard to read)

Not in WHO breast classification

Rare, first described in 1977 (Hum Path 1977;8:679)

Median age 60 years, range 43-79 years

Also occurs in anogenital region (AJSP 2006;30:1193)

Intermediate prognostic features between lobular and ductal carcinoma; best prognosis if unilateral and < 2 cm

25% present with greater than stage I disease, compared to 0% with tubular and 60% with lobular carcinoma (Mod Path 2007;20:130)

Axillary nodal metastases in 13-43%

May be a well differentiated ductal carcinoma with a lobular growth pattern, or a tubular variant of lobular carcinoma (Virchows Arch 2006;448:500)

Gross: 0.5 to 2.5 cm, usually unilateral, 19-30% multifocal

Micro: typical areas of invasive lobular carcinoma with cords of single file cells, which merge with small round to angulated tubules with minute or undetectable lumina; usually accompanied by DCIS, LCIS or both; tumors are usually well differentiated with small, round nuclei and indistinct nucleoli; stroma is densely collagenous with prominent elastosis

Cytology: single filing of cells and tubular structures; tumor cells have intracytoplasmic vacuoles, low nuclear grade, low mitotic activity; relatively clean background; variable apocrine cells (Acta Cytol 1996;40:465)

Micro images: AFIP - mixed tubular and invasive lobular components #1;  #2 (arrow points to glandular component);

other - mixed tubular and lobular components #1 (fig a-d);  #2;  #3;  #4;  #5;  #6;  #7;  involving complex sclerosing lesion;  axillary nodal metastasis;  E-cadherin (fig 3a);  34betaE12 (negative in fig 4a although usually positive);  beta-catenin+ (fig 6a);  p120 catenin+ (fig 7a)

Virtual slides: tubulolobular carcinoma

Positive stains: E-cadherin (75-100%), 34betaE12 (93%), catenins (alpha, beta or gamma-membranous staining in 100%), usually ER+ and PR+

DD: mixed ductal and lobular carcinoma

References:AJSP 2004;28:1587, AJSP 1997;21:653, Stanford University

 

Since LCIS and nothing worse is an unusual condition, you may find more eyeballs if you post on one of the invasive forums, or you can try searching on 'tubulolobular' and see if any posts are linked with specific posters.

I know this is very difficult having a rare condition. There may not be solid guidelines to follow. You can try more stuff on Pubmed

http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed

ratbait

I am a two year survivor of tubulolobular breast cancer.  My tumor was a little over 2 cm, and it took three times to get good margins.  I had four matted positive lymph nodes, and was treated with 15 weekly infusions of Adriamyacin, daily cytoxan, and then twelve weekly infusions of taxol.  I then had a boatload of radiation, from about three inches below the breast to the supraclavicular, intramammory and axial nodes.

 I've been on tamoxifen since shortly before starting radiation.

 I obsessed a bit about the tumor type initially, but stopped.  There aren't enough of us around to say that treatment should be any different than for other types.  

 I also mentally said my type was favorable, because even though the tumor was large, it was snaky, so there wasn't alot of mass.  And due to my young age, it didn't show up on a mammogram. 

Anyway, there are others out there with your pathology type - and there is at least one person with a significantly worse prognosis who is still kicking strong two years post diagnosis.  And what's more, I plan to keep kicking another two and a half decades so that I can reach retirement age.

Hugs, and feel free to PM me with questions.  I don't check this board very often so have patience if it takes a while for me to get back to you. 

blondie64

Hi,

I also have tubulo-lobular morphology, 3mm with a Nottingham score of 3+2+1 = 6, Grade 2. No involvement of the 2 lymph nodes. I am set to start radiation in March for 3 1/2 weeks but have not yet talked with an Oncologist.  Tumor was E+, P-, and I can't remember HER-2 analysis. Can anyone fill me in on what to expect from the Oncologist? My BS has told me that I have the "best" cancer to have.  Is there such a thing?

Bitsy42649

I am a 12 year survivor of tubular breast cancer. I had a lumpectomy, radiation and 4 round of chemo. I was unable to tolerate Tamaxofin.

rosyFL

So then this is NOT LCIS?  I'm confused here.

leaf

Yes, I think most if not all experts opine that tubulo lobular carcinoma is NOT LCIS.  According to this Stanford Univ site, some do regard tubular lobular carcinoma as a variant of lobular carcinoma.  http://surgpathcriteria.stanford.edu/breast/tubulolobular_cabr/printable.html 

This Stanford website describes tubular lobular carcinoma as an infiltrating type of cancer - infiltrating is invasive. http://www.cancer.gov/dictionary?cdrid=46349 .  So, by definition, tubulo lobular carcinoma is not LCIS.

India1

Hi, I am diagnosed with tubulo lobular carcinoma on July 6^th 2017, Had a sugery and it was found 1.5 cm Cancer lump was removed with margin of 2 cm each side. Post surgery Histopathology report confirmed that cut margins are free of cancer. It shows ER/PR + and HER negative , Ki-67 is 20% which is good news. No carcinoma in any Lymph node.

Oncologist suggests going for Radiation and Medicines. My question is that if Tubulor carcinoma is not going to come back from what I found from Internet, it is completely removed from my body, Histopathology report says Intraductal carcinoma is not seen , do I need radiation? Please send me your reply to this board. I appreciate for any suggestion regarding treatment. I don't want to take radiation or medicines. What are risks?

Dx 7/06/2017, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-

Surgery 7/12/2007 Lumpectomy: Right

Icietla

Hi India1, and welcome to BCO. We are so sorry to learn of your having breast cancer, but we are glad you found us and that you have been getting good, prompt care.

Unfortunately, nobody can responsibly give you assurance that your cancer will not return. It is possible that tumor cells (or even one tumor cell) got away from the tumor to migrate elsewhere. There is lifelong risk that our breast cancers will recur in the area of our breasts or elsewhere in our bodies. The radiation treatment and medicine/s your Oncologist recommends are aimed at reducing the probability of your cancer's recurrence, to give you your best prospects for survival.

I hope you will discuss your concerns with the Doctors and have an open mind about the recommended treatments and what your Doctors can do to make all your treatment as easy as possible for you. They would be very knowledgeable about risks and side effects and how to minimize them for you.

Here is a general article on the customary use of radiation treatment for breast cancer.

http://www.breastcancer.org/treatment/radiation/when_appropriate

Here is a member discussion thread relating to risk of breast cancer metastasis, even in many cases detected and treated at early stages.

https://community.breastcancer.org/forum/105/topics/812929?page=1

Please read through them, and please feel free to ask your Doctors and/or your Brothers and Sisters here at BCO anything relating to breast cancer concerns. We understand about treatment decisions being difficult. Better to make your treatment decisions from information than from fear -- you would probably have more comfort and confidence in your treatment decisions that way.

I take a little pill once daily to reduce my recurrence risk. So far the side effects have not been so troublesome.