Final study results!!!!!!!

matic22
matic22 Member Posts: 132
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Hello to all of you ILC ladies!
We have just finished our 3 year research of HER-2 positive breast cancer and I would share some of the results with you.All the results were compared with 5 big European researches, Finher, HERA and the other studies. Our study has shown that the most importnat independent prognostic factor is HER-2 status. The second one were PRG receptors, then nodes and ER receptors, and within the grade mitoses!!
So, HER-2 negative tumours had a very good survival rate in our study, also had HER-2 positive, but of course worse.HER-2 is the really strongest prognostic factor in breast cancer because everything is based on molecular pathways. PR receptors were more PREDICTIVE FACTOR for hormone therapy , SO women with both positive ER and PR receptors had much better survival than did have those with ER positive and PR negative. Mitoses were the best prognostic factor within the grade of the tumour and IN LOBULAR INVASIVE the mitotic activity was the ONLY IMPORTANT PROGNOSTIC MARKER , tubules and nuclear pleomorphism fell out.
Our best oncologist dr. TANJA CUFER explained to us that biologically very aggressive tumours are those that are HER-2 potivie, hormone INDEPEDENT, with high mitotic activity ductal type cancer, and these tumours tend to metastasize even when found very very small--Yeven smaller than5 mm in diameter. On the other hand, she explained, there are some women with a very huge exulcerating tumour that is locally advanced and lazy actually-hormone dependent and with very few mitoses that grow very very slowly and they do not metastasize to visceral organs never or really very lately in their course of the disease. Of course, all the pastients with hormone dependent tumours must be on hormonal therapy to be in remission.
I just wanted to deal this with you.-
Kind regards and good luck to you all.)
matic
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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Hi Matic -
    Good to "hear" from you! Thanks for sharing the study conclusions with us. I just re-read my path report and can't find the word Mitotic. Should I question my Onc about this?
    Hope everything's going well...how's Mum?
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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    WOW...
    Sadly, this is excellent news for some and not for others.
    I sure wish there were a cure or an even playing field...
    but some good news is better than none.
    Bless you for your sharing of this information!!


    I am curious if anything about the 2D6 genome came to mention....if no side effects of Tamoxifen, should we worry?
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  • matic22
    matic22 Member Posts: 132
    edited August 2007
    Dear Laura!
    Hi!
    Yes, I would recommend to you to ask about that because this is really important thing. There is another determination of "grade", which is not the same grade as this one of Bloom-Richardson"s. One famous oncologist(I cant remember his name) has done one research with this genomic grade and the results showed that grade I tumours fell in the good prognosis genomic grade(genomic gradeI), grade III tumours fell in the bad prognosis group(genomic grade 2-NOT 3, because there are only 2 GENOMIC GRADES!!), and grade II tumours(the most lobulars are in there) went somewhat between BUT those that had MITOSES 1 fell into GENOMIC GRADE 1-SO GOOD PROGNOSIS, those that had mitoses 2-3, fell to genomic grade 2-BAD PROGNOSIS.
    These findings are really fascinating!!!!Iam so happy because there are some researches every day.
    Laura, my Mum is great. She really takes care of herself and is very self-confident .She is not depressed any more, she smiles a lot, and so on..(I will add some photos of us if you like:)), and I really am grateful to every day that we spend together.I have studied her how to "forget" the cancer, even some of her friend have had a recurrence already, I have explained to her that EVERY TUMOUR IS DIFFERENT AND HAS ITS OWN BIOLOGIC PATHWAY AND PROGNOSIS.And actually we just can not predict it. You have to believe that it is never going to happen again and LIVE with it. I believe the diagnosis of lobular breast carcinoma is not so bad if you get it even in stage 3, becasue it can be biologically very favourable, so ladies, keep in mind you will go through these and be "friends" with your cancer .do not hate it!
    P.S.(those recurrences I have just mentioned were mostly of ductal high grade cancer of breast of my mum2s friends but they hang on in there.So they are all alive:)!

    Matic:;)
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  • matic22
    matic22 Member Posts: 132
    edited August 2007
    Dear wallycat!
    No, you do not have to worry about response to tamoxifen if you do not have any side effects.Side effects are independent of the real response to the treatment.So, do not worry about it.You can read it in some pharmacological books:)Enjoy your life:)
    Kind regards:)
    Matic
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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    Matic22, thank you for your response. I did post 2 new studies that seem to indicate hot flashes as found those in tamoxifen metabolizers (less recurrence) while the the no-hot flash group tended to have more recurrence (and had the non-metabolizer genome).

    And YES! Please post pictures!!! I would love to see you and your mom!!
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  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited August 2007

    Thanks, Matic. That was very interesting. It seems to be be good news for my ILC, but I still worry and wonder if I should be on Tamoxifen even though the benefit was such a very low percentage. My mom handled 5 years of Tamoxifen with relatively few side effects, she had IDC with lumpectomy, was post-meno. I had ILC, bilateral and pre-meno. Did the study take compare types of surgeries, post/pre meno., or strictly a tumor study??

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  • matic22
    matic22 Member Posts: 132
    edited August 2007
    Dear lini57!
    Yes, the study also includes clinical data, of course. And premenopausal women actually had worse survival but only if they were very young(under 40 years), and about type of surgery: it is safe to treat lobular with lumpectomy and radiaton, but only if it is not multicentric, in that case total mastectomy is advisable.BUT I would never advice to my Mum to have bilateral only because she has had lobular in one breast.I believe this is ridicilous, I mean, do not understand me wrong, but it is hard enough to be without one breast, why to remove the healthy one also?It is actually NOT TRUE for lobular to be more bilateral than ductal.The new studies have not shown this "findings".It seems to be more a myth than real. Even some of you have had LCIS and ILC in the same breast.So what?!Having LCIS is an indicator that maybe some day in life you will also have LCIS( ILC) in the other one, but this is not a true cancer.LCIS can NOT metastasize!!!!
    I hope you will all understand my point of view.Of course it is a personal choice.
    Good luck;)
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  • LizM
    LizM Member Posts: 963
    edited August 2007

    Matic, thanks so much for posting the study results. I have a question that I have gotten two different answers to. My biopsy showed IDC, grade 2 with a 30% KI67 (considered high but which some say can be an inaccurate test). My final pathology after mastectomy showed ILC and IDC, grade 1 with low miotic rate (along with LCIS/DCIS also low grade and ALH). My right side removed for profolactic reasons showed ALH. My tumor presented itself as a thickening, never a lump which also makes me thick more of it was ILC. I would like to believe that my tumor is a grade 1 since that is what the final pathology says; however, the biopsy of grade 2 and high KI67 still haunts me. One answer I received is that my tumor was downregulated and should be considered grade 1 and the other answer I received is that breast cancer can be heterogeneous. It seems to me that the overall review of my entire tumor shows it to be grade 1 but it may have had smaller areas of IDC that were grade 2. Does that makes sense? Is it common for breast cancer to be heterogeneous and made of up different types of breast cancer and high and low grade cells? What is the prognosis for mixed ILC and IDC? My oncologist told me it doesn't matter the type of breast cancer as it is all treated the same.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008
    Liz

    I came across this 2005 ASCO abstract addressing "grade of tumor" just recently, so I share it with you.

    Abstract No:
    506
    Citation:
    Journal of Clinical Oncology, 2005 ASCO Annual Meeting Proceedings. Vol 23, No. 16S, Part I of II (June 1 Supplement), 2005: 506
    Author(s):
    C. Sotiriou, P. Wirapati, S. Loi, C. Desmedt, A. L. Harris, J. Bergh, J. Smeds, F. Cardoso, M. Delorenzi, M. Piccart
    Abstract:

    Background: Histological grade (HG) in BC provides important prognostic information. Grade 2 tumors are observed to have an intermediate clinical outcome if compared to grade 1 (good prognosis) and grade 3 (poor prognosis) tumors. A major problem is the lack of inter-observer consistency, particularly for grade 2 tumors. The aim of this study was to correlate gene expression profiles (GEP) with HG and clinical outcome. Methods: GEP from 137 early BC patients receiving only locoregional therapy at 2 institutions was performed using Affymetrix U133 A chips. Median follow-up was 6.8 years. Differentially expressed genes were identified by contrasting grade 1 and grade 3 determined by the local pathologist using a stratified t-test. Central pathology review is ongoing. False discovery proportion was done using 10,000 permutations. A multiple independent validation was performed using three publicly available datasets from Van't Veer et al. 2002, Sorlie et al. 2001 and Sotiriou et al. 2003 (total=281 tumor samples). Results: Grade 1 and 3 tumors were associated with distinct GEP. A “genetic grade index” (GGI) based on the 80 most significant genes was computed. Interestingly, grade 2 tumors were found to have GGI similar to either grade 1 or 3 tumors. At 50% cutoff, GGI segregated grade 2 tumors into two distinct subgroups namely grade 1- and grade 3-like with statistically different relapse free survival (RFS; HR: 3.89, p=0.013) and distant metastasis free survival (DMFS; HR: 4.67, p=0.049), similar to those observed in HG 1 and 3 tumors respectively (RFS; HR: 2.61, p=0.019 and DMFS; HR: 3.59, p=0.026). We then applied the 80-gene list to 3 independent publicly available datasets. Similarly in all three, grade 2 tumors were divided into grade 1- and 3-like subgroups with statistically distinct clinical outcome. Conclusions: HG 1 and 3 in BC is associated with distinctive GEP. GEP reveals grade 2 tumors to consist of either grade 1 or 3 molecular signatures, associated with different prognoses. This has been independently confirmed in multiple validation sets across different microarray platforms and could have important implications for optimal patient management.
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  • NancyNY
    NancyNY Member Posts: 67
    edited August 2007

    I have a question: What is Mitotic rate? My lobular path report, which I recieved from Sloan Kettering, said they don't grade lobular, and did not mention mitosis. Thanks

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  • nash
    nash Member Posts: 2,600
    edited August 2007
    nancee--mitotic rate is one of the things the modified Bloom Richardson score measures. It has to do with how fast the cells are dividing. Interesting that Sloan Kettering doesn't grade lobular--I'd read that there are issues with grading ILC, and I wonder why some labs do and some labs don't.

    matic--thank you for the info. I have a question--you said the under 40 group had a worse prognosis--was that independent of mitotic score?
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  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited August 2007
    Matic ~ My mother had ductal, not lobular. I believe that her lumpectomy choice was the right one for her, but I can't help thinking that there is still much credence to the bilateral mast. recommendation that my BS gave to me, especially when I and many others had areas of LCIS, ALH, or ADH lurking in the prophylactic removal. I had all three lurking in there, and am grateful for the bilat. recommendation and will continue to advise one for anyone with ILC. Of course, it is a highly personal choice, but I just couldn't see myself living with the constant fear of a new diagnosis, not that the fear is ever all gone. The bilateral did buy me out of chemo, rads and Tamox., a tradeoff albeit not such a great deal, huh?

    Thanks again!
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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    Lini, how come no tamoxifen?
    I've had bilaterals (no cancer was found in the contralateral breast, thankfully) but I was told tamoxifen....
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  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited August 2007

    My onc. told me that my benefit would be so small and the risks outweighed it. I still wonder if I should be on it, but I'm scared to ask and scared not to ask. My mom had minimal SE's, but she was post-meno and in her early 60's when she took it. I'm 49 and pre-meno. Had my BRCA test come back positive I was going to get the prophy. ooph and the Tamox.

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  • marshakb
    marshakb Member Posts: 1,664
    edited August 2007

    I think the reason for bi-lat is the fear that a lobular cancer won't show up on mamm and ultasound until it is too late. I'm not worried so much about metastisis statistics as I am having a LCIS turn into an invasive lobular. My body has already proved to me that it is capable of doing this. JMO and Matic, love having you and your vast knowledge of Lobular here on this thread. Your devotion is outstanding! Marsha

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  • Lynn12
    Lynn12 Member Posts: 1,008
    edited August 2007
    My path reads: Infiltrating lobular carcinoma, lobular neoplasia (lobular carcinoma in-situ and atypical lobular hyperplasia), microcalcifications associated with lobular neoplasia and benign terminal duct lobular units.

    My ILC was 7.5cm, so it sure did get large without anyone knowing about it. Like Marsha, I see it that the LCIS turned into invasive and I'm afraid of the other breast doing the same...can't live by the 6 month MRI's/mammos.

    Matic, thanks so much for the information and your dedication to cancer research!
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  • matic22
    matic22 Member Posts: 132
    edited August 2007
    Hi dear LizM!
    First of all, I would like to say that I know very well that oncologists always say that the type does not matter, BUT IT DOES.It is wrong to treat every breast cancer the same!Really wrong.because biology of the every single tumour is different and you cant treat everyone the same.We people are also different, we are not the same, if you know what I mean. And the other answet to you would be: YES, every tumour is heterogenous but this does not mean that some areas are grade 1 and some grade 2 and some grade 3. IN the majority of breast tumours there are some cells that are grade 1 and some grade 2 , but the pathologist have to look at the entire tumour and then he/she takes the worst part of the tumour, so if you have inside of the tumour grade 1 some more pleomorphic cells and more mitoses than in the majority and less tubules for instance, you would be grade 2 not 1.Do you get a point?I hope you do!
    In your case I would say you are grade 1 becase the final histology after mastectomy is more accurate than biopsy.mixed IDC and ILC tumours have a relatively similar survival than IDC tumours, but more favourable.It depends on which part of this tumour metastasizes, if at all.
    I hope I have answered to your question!:)
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  • matic22
    matic22 Member Posts: 132
    edited August 2007

    Hi nash! Well, in our study the majority of patients had mitotic score 2-3, so actually it was a dependent factor, not independent.BUT if you have score 1 for mitoses, you will do much better than one woman with mitotic score 2-3 even if she is 60 years old.Kind regards;)

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  • scarednancy
    scarednancy Member Posts: 76
    edited August 2007

    Thanks for the info. Some of it is good for me and some not. I wonder why they didn't mention the OncotypeDX test. My mitotic rate was 1 and my HER-2/neu was negative or 0. The part that worries me about mine is the ER/PR. My Estrogen receptor had a proportion score of 5 and an intesity of 2 while my PR was 0. I think it's all a crap shoot.

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  • LizM
    LizM Member Posts: 963
    edited August 2007

    Matic, you did answer my question and I do feel more confident in accepting that my tumor was grade 1. I had already read quite a bit on mixed IDC and ILC, sometimes referred to as tubulobular and it does seem to have a fairly good prognosis. My tumor was also highly estrogen and progesterone positive and her2 negative which also gives me cause for optomism. If it weren't for that dang positive node I would feel a lot better. Thanks so much for your response to my questions.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Matic -
    Thanks for your all the info! I will ask my Onc the Mitotic # - but I remember the surgeon saying, after the Mast. that because I had such a large and invasive Hematoma develop as a result of the Core Biopsy, they had a dificult time grading the tumors. They ultimately settled on a grade of 2. Glad Mums's doing so well...yay for both of you (sure, post some pics...we'd love to see them)! There's an ILC researcher...I think his name is Christiani...and I can't remember his last name - but it's a very Italian name, who's very involved in ILC. Do you know of him?
    Take care...
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Sherri -
    Yes, that's the dude! LOL Thanks!
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  • matic22
    matic22 Member Posts: 132
    edited August 2007
    Dear LizM!
    tubulo-lobular breast cancer has a very good prognosis, but I have understood you that you have had mixed IDC and ILC , IDC of classic type and ILC classical type, that is the reason I said the prognosis is the same than of IDC, no special type.
    Just for info;)Oh, and please, do not be sad because of one positive lymph node, My Mum also had 2 positive lymph nodes, fortunately only micrometastases, but as far as the prognosis of lobular is dependent not so on the node status but mainly on biology and mitotic activity and so on, I believe you are going to be just fine. Believe me!I know there are no guaranties, but if you believe you are going to be fine, you will be. Your prognosis is good with that positive node, even if you have had none positive node, your prognosis would be the same. I have met many women with 10 positive nodes that are just fine many years after mastectomy, on the other hand many women died with none of positive nodes, so hang in there. My Mum lives completely diferent life than before, she does not bother herself with lobular cancer any more, and I am happy because of that.
    She believes that she is healthy now and I believe also.
    The prognosis of breast cancer depends also on imunobiologic features of every single woman.
    Kind regards;:)
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  • momdablakes
    momdablakes Member Posts: 1
    edited August 2007

    O.K. tell me if I understand this. I had lobular adenocarcinoma, Stage 1, no lymph nodes, l.5 cent., grade 3 tumor. I had a bilateral mastectomy, 16 rounds of chemo and because it was grade 3 (also negative receptor) I am doomed???

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  • matic22
    matic22 Member Posts: 132
    edited August 2007
    Dear mattiegirl!
    I have to admit that I have not seen many lobulars that would have been estrogen receptor negative, so I actually can not say about your prognosis. But a very good thing about this lobular is that it was caught early.So hang in there. On the other hand, if lobular carcinoma is hormone negative and grade III yes, it is aggressive.
    My Mum has a very good friend that had invasive lobular classical type 11 years ago and it was estrogen receptor negative but grade I (mitoses1), so I can not say for this particular case. She was treated with adjuvant chemotherapy with CMF and mastectomy.No hormone adjuvant therapy!

    I wish you good luck and be happy you have caught it really early. Not many lobulars are caught early, so be really happy about that!
    Kind regards from Slovenia:)
    Matic
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  • minuet
    minuet Member Posts: 25
    edited August 2007
    Matic ...Thank-you for this info ... there was some good news for me
    as my mitosis was scored 1 out of 3, node negative, her 2 negative and ER 65 % and Pr 75 %. I'm curious if this will be published in a medical journal. I'm also interested in lobular in younger women as I was dx at age 40. How many women in your study were dx in their 40's? What was their pathology like...more aggressive or not necessarily so? Thanks again for sharing this.
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  • matic22
    matic22 Member Posts: 132
    edited September 2007

    Dear minuet!

    Sorry for such a late response, I just have been so busy with my studying!Our research will be some day published in medical journey, yes, but it takes a very long time to get there.People think it is so easy but IT IS NOT,IT IS VERY IMPORTANT for researching to be written really well and exactly.I hope you know what I mean.

    In our study age was important factor for prognosis, yes, unfortunately younger women(under 35 years) really had much worse survival than older.

    Just to let you know Mum is doing well, she has just had an appointment with her oncologist and all is well. It will be soon 4 years after the diagnosis.

    Yes, the time passes so quickly!

    Kind regards and stay healthy_)

    MATIC22

    P.S.: I have one question. What is now with personal mailings, I can not see my inbox, this has been strange since the program is different.

    Bye!

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited September 2007

    Quote from MATIC22

    "P.S.: I have one question. What is now with personal mailings, I can not see my inbox, this has been strange since the program is different."

    Matic the BCO admins are working on bringing back the flashing symbol to alert us when we have any new personal messages.  Until then you can go to MY HOME on the menu at top of each page and click on your INBOX to read any new PMs.  Also, if you go to the PREFERENCES tab in the MY HOME section you can check the box to be alerted by email anytime you have a new personal message in your inbox. Smile

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited September 2007

    Dear Matic,

    Thank you so much for keeping us up to date!

    I would like to ask your opinion please...

    I was dx'd with ILC in Feb. 2.5 cms with 4+ nodes and extranodal extension.

    I had a bilateral in March.

    I started on dose dense sequential Adriamycin, followed by Abraxane and then did one cytoxan but am having an adverse reaction to the Cytoxan. My onc is considering switching me to Xeloda for the next two months.

    How does this sound to you? My path is: Tublule formation 3, nuclear pleomorphism 3 and Mitosis 1.

    Thank you so much in advance!!!

    g 

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  • matic22
    matic22 Member Posts: 132
    edited September 2007

    Dear nosurrender!

    You have caught ILC at stage 2 , which is still early stage breast lobular cancer BUT we all know that the long term prognosis of breast cancer MOSTLY depends on BIOLOGIC PROFILE OF THE TUMOUR.Have you had a pleomorphic lobular carcinoma?Some research say pleomorphic is more agrressive than classical lobular and I agree!Next year I am going to do doctor work of invasive lobular.I will compare ductal carcinoma to classical invasive lobular and to pleomorphic lobular and then we will see. Then I will be able to say: pleomorphic is better/worse/the same as the other ones.The other day I talked to oncologist of our institute and she said in lobular the mitoses are the most important, several studies have shown these findings and it is logical because: TUBULES do not exist in lobulars so you automatically get 3 points for that.But I wonder what about nuclear pleomorphism?!This is still unknown.

    I believe your prognosis is with today"s agressive chemo and hormone therapy good.yOU HAVE TO believe you are going to be fine.If you are sceptic, then the cancer will return no matter what your grade is, mitotic count and so on.I hope you understand me ?!

    In our Institute of Oncology the doctors say about lobular two things: some of them think it is the same disease as ductal, BUT I TOTALLY DISAGREE WITH THEM, because several studies have shown it is completely different and women with ILC die relatively in the late course of the disease, after many years.The other pathologists say ILC is a disease with a long free interval but when it comes back it is usually not only in one place which is probabla true because of its nature of growth.The metastases of ILC are completely the same as primary ILC in the breast-it grows in sheets not as a nodular mass!

    I suggest to all patients with ILC(including to my Mum) to ignore the statistics about ILC.The truth about it is that ILC ladies have more favorable outcome, no matter what.Dr.Cristoffanili also showed these findings.I think it is 11% lower mortality rate for ILC than for IDC.

    The biggest mistake of treating ILC is not giving any adjuvant setting.THIS IS REALLY WRONG!Especially for stage I ILC.i THINK for the good long term prognosis it is very important to treat ILC agrressively as ductal cancer and then the outcome will be good!

    Kind regards and hello to all of you:)Stay strong!

    Matic22

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