Final study results!!!!!!!

Jennifer40

Hi Matic22, I am new to this site and newly diagnosed a month ago.  All the info in this conversation is very confusing!  I have Dr. Cristofanilli in Houston and I didn't even know he was a specialist in lobular cancer.  Diagnosis reads "invasive mammary carcinoma, modified Blacks nuclear grade 1-2 with lobular and ductal features, lobular neoplasia- LCIS.  Estrogen receptor positive (60%) and progesterone low positive (3%).Absence of myoepithelial cells in the leasion and E-cadherin is negative in tumor cells supporting invasive lobular carcinoma. Another 0.4 cm nodule was also lobular carcinoma.

I had an MRI and 2 u/s and about 5-6 FNA's.  Dr. C wants to treat with chemo before we even do surgery to find out what we have.  I have had 2 other opinions that chemo is not the best course until after surgery and the pathology is complete.  I was going to go with that treatment plan, but now that I heard Dr. C is so good with lobular, I am worried I made the wrong decision.  I don't know a lot about all of this yet and I want to make an informed choice.  It sounds like we got very lucky to catch this so early.  One of my doctors has said he has never seen lobular caught this early.( My mammogram was clean but I had a little bump on my skin that turned out just to be nothing but during the u/s they caught the other area)

Thanks for your help, I wish your mom the best.

Mizsissy

Whew Jennifer, what a decision!!!  I'm not the expert here, but I would guess if you had chemo first they wouldn't find any tumor at all later on.  IMHO I'd go right ahead with surgery--that way I would know it's gone....but this sounds like a case for the experts.

Glad you caught it early! 

LizM

Hi Jennifer, your diagnosis sounds very similar to mine.  I also had mammary carcinoma with lobular and ductal features and LCIS and ALH.  I also had a clear mamogram and tumor was only found after I insisted on an ultrasound.  How large is the ultrasound indicating your tumor to be since one of you doctors is recommending chemo first?  The ultrasound indicated I had a 1.5 cm tumor and another small 0.3 cm tumor.  My ER was 80% and PR 75%.  I had surgery first and ended up having a 2.1 cm tumor and one positive node.  Ultrasound of nodes looked clear before surgery.  It is my understanding that survival is the same whether you have chemo before or after surgery.  The only difference is you can tell how well you respond to the chemo.  My oncologist has never placed much emphasis on whether I had lobular or ductal and indicated to me he would treat me the same either way.  I however feel my symptoms presented as lobular because I was previously diagnosed with atypical lobular hyperplasia and I had a thickening, no lump.  I also had both my breasts removed and the good breast also had atypical lobular hyperplasia.

I'm sure Matic will come along soon with some insight on your pathology.  Good luck with your decision.    

LizM

Jennifer,  here is Johns Hopkins explanation of mammary carcinoma from their Ask an Expert website:

Hi and thanks for being there for all of us who are so confused. I am 46 years old female and I just received my pathology results from a bilateral core biopsy. My right breast was fine (benign). Left breast however states this: Invasive mammary carcinoma at 1 o'clock and at 4 o'clock - microscopic examination reveals invasive mammary carcinoma with lobular features and foci of carcinoma in situ. I'm so confused. So my question is - what type of cancer do I really have and what does "lobular features and foci of carcinoma in situ" mean in this instance. Thank you so very much for a response.
A:	your breast cancer grew at the junction of where a lobule and duct "meet" thus the term "mammary". so you have both ductal and lobular carcinoma. not that unusual. treatment is till the same as with other types of ductal or lobular carcinomas. so next step is to see a breast surgical oncologist. if you want to come to us just call 443-287-2778. we are happy to see and take care of you.

http://www.hopkinsbreastcenter.org/services/ask_expert/index.asp?cat=14

matic22

Hi dear Jennifer40!

You are very young still so you have to do everything to stay healthy but still, I do not see the reason in your case why you would do the chemo before surgery if the tumour is very small.=???I am a bit confused here, how large is the biggest tumour?If it is not more than 5 cm in the diameter, then preoperative chemo is not recomended. Dr.Cristofanili is a very good doctor as far as I know but of course, you have rights to hear another opinion.

Hang in there and if you have any other questions, just ask me!

Kind  regards from chilly Slovenia!:)

riverinerabbit

Hi Matic, sorry I took so long to reply. I've still to work out how to navigate this discussion board and lost this thread. My age at first diagnoses was 40 and my treatment was mastectomy and tamoxifen.



my latest treatment was 3 CEF and now single agent of the Doxi.I've had 3 chemo regimes in 8 years and had tamoxifen, arimadex, femara, all held the disease for a period of around 2 years, latest hormone treatment was Faslodex and I had disease progression on that. My bone mets are extensive but not big.



Hope it's not too cold for you. Summer this side.



Kind regards,



River

JoelKM

Could you please post a link to where these study results have been published?

nash

Joel--if you're referring to the study Matic posted about originally to start this thread, it is my understanding that the results haven't been published yet. I'm sure Matic will be along to give a timeline on when the study will be made public.

shrink

I'd be curious about the number of participants in the trial, the  phase of the trial and what the inclusion criteria were. Was it a double blind study (the gold standard for research)?  What international guidelines were used?  Even if the study hasn't been published, this would be important information to have if someone were going generalize from the results to individual cases.  For example, if there were only 100 women in the trial with mixed diagnoses,  you couldn't draw valid conclusions from it.  If you didn't know their ages. other conditions or what treatment they'd had, etc., you're in the dark in terms of one's personal situation.

nash

Excellent points, shrink.

matic22

Hi ladies!

Our study was retrospective and it included 547 female breast cancer patients that were diagnosed with their cancers in 2004. All of them had patohistologically proven invasive breast carcinoma from stage I to stage III. Those who had metastatic disease and bilateral disease were excluded from our study. All of the patients were treated with radical local surgery and radiotherapy and adjuvant chemotherapy or hormone therapy.Chemotherapy was given to those with positive lymph nodes and to those with high risk node negative breast cancer.Chemotherapy usually cointained the anthracyclines. The median age of patients was 58,83 years (27-87). 130 of them were premenopausal, 417 were postmenopausal. Thosw who had HER-2 positive breast cancer did NOT receive adjuvantn trastuzumab, but they did get it when or if they developed metastatic disease. The median time of follow-up was 2,5 years. Among 435 women with HER-2 positive breast cancer the disease recurred to 32 of them and among HER-2 negative women the disease came back to 23. 12 patients died and the cause of death was breast cancer in all of them. 8 of them were HER-2 positive and 4 were HER-2 negative.

For correlations between HER-2 status of the tumour and other classical prognostic factors (size, nodes, grade, mitoses, ER,PR, vascular invasion) we used the hi quadrat test (statistycal test). Disease free survival and overal survival were analysed with Kaplan-Meier curves. Disease free survival was measured as time from diagnosis to recurrence(local or distant) and overal survival means time from diagnosis to death from any cause(not just from breast cancer).We also used Cox uni and multivariat tests for every single prognostic factor.

I hope I answered your questions:=)

And I would add that next year maybe when I become a doctor, we will publish this in some journal, or maybe later on because students can not publish these studies in the worldwide journals, in our Slovenian yes, but not in the worldwide.

Kind regards and I hope this post is understandable:=)

matic

shrink

Thanks, Matic, for the info.  Lots of luck on your career path as a physician.

Toni

Hi to all and matic! I had mastectomia - main tumor IDC 1 cm., and some 7 mm. tubulo-ILC found unexpectedly. What type is it - mixed? I am doing chemo and radiotherapy, hormone therapy ahead. As 1 node was positive with IHC of the node metastasis ER/PR+, HER 0, I wonder what kind of cancer is there /IDC or ILC type/ and does it matter for survival prognosis and way of treatment.

Being a newcommer in this forum I am greeting all and thank you all for the useful info and support. Matic is doing great answering so devotedly to numerous questions.

Looking forward for a reply. Good luck !!!

Toni

GOOD luck

matic22

Hello dear Toni!

Welcome on board and thanks for the question!

Well, you have had both tumours-IDC and ILC.You are special now;)Many women have this combination of both tumor types.

Well I can not answer to your question about the metastasis in lymph node, because I have not seen your tumor slides., if you know what I mean.This information knows only your pathologist that have seen your tumour under the microscope.

I really can not tell you.It does not affect the prognosis, I would say.These tumours were very very small and biologic profile is very favourable so please hang in there.

I have read one researsch the other day about comparison lobular to ductal.I will put it down in the near future and actually I have to admit I was highly surprised.Lobular actually did not go better than ductal.It is also true that lobular had an improvement in survival if it was ER+++ and was treated with hormonal therapy, BUT IF IT WAS HORMONE NEGATIVE, IT WENT WORSE THAN DUCTAL, !!Especially it was worse after 10 years of follow up.Those lobulars that were highly ER+++ and were treated correctly with hormonal therapy, went really well even after 30 years.So, hormone negative lobulars would go worse than ductal hormone negative.It is not clear why.I will put down that article so that you could all see it.

Kind regards;)

Matic

nash

Matic, what percentage of ER/PR is considered ER+++? My ER was 49% and my PR was 31%. I would guess those would be considered moderately positive?

mkl48

matic22,

Your unequivocal statement that Taxol is not to be used is both interesting and distressing. I know that the NEJM study suggested that Taxol was not useful in ER+HER_, but where is the proof that Taxotere is better. Both MDA and Uof Mich are using taxol as first line. The MDA lobular expert definitely uses Taxol even before Adria/c or FEC. Beth  A study from Baylor also suggested the outcomes were not better for lobular if all the usual variables were accounted for.The MDA study suggested neo-chemo response was not as predictive of outcome in lobular.

matic22

Dear nash!

ER/PR+++ is considered more than 75% of positive cells. I would say that even if it is 70% it is still very high ER positive.Yes, in your case ER would be considered moderately positive and PR poor positive, I believe.

Dear Kmb50!

Well I have read many articles about Taxotere being more appropriate for improving the prognosis of those tumours.I can not tell which one the exact,.I can see again through the articles(I have written down the websites of them)and one day I will put them down here so that you can see it.One very good article was published in NEJM and it is lined as: Adjuvant docetaxel for node-positive breast cancer,It is from 2005.I can put it down some day or just a link.

I will try to do it ok?:)I know that classical lobular is the tumour that does not respond very well to neo chemotherapy but however I think chemo gives a benefit even for lobular.Not all lobulars are indolent!!!!!Some are quite aggressive-We have now literature that shows us this indolent behaviour but also progressive behaviour especially after 10 years, but if we have a look at behaviour of ductal we can see the majority have recurrence within 10 years, buit then tha plato of curves is seen.

I think only oncotype or mamaprint can give you the EXACT POINTS of your individual lobular/ductal tumour.We can not say any more lobulars are....such, ductals are such...I have been disapointed so many times so I am afraid to tell some woman...You are going to go like ...Because noone can really know it.!Only genes can tell us and in genes there is a future of oncology,not grade, not size not nodes .These all things are old fashioned and not precise enough to prognose every individual tumour.

For example, the size of the tumour does not mean anything to me, because you can have an 9 cm tumour that will never metastasize and on the other hand 5 mm tumour that will metastasize very quickly, within 2 years.So, please, tell me,does size really really matter?Not to me.And those oncologists who think that every tumour above 1 cm needs chemo, is a very bad one.The genetic profile of your tumour tells you everything you need, need of chemo, hormonal therapy and maybe imunotherapy.

Even some papilary tumours , which are considered to be extremely good prognostic, are not, if you see the scores from some women with papilary and they get score 18,. it means, it is quite favourable but not so as some oncologists think they are.So, the type of the tumour is important but even within the same type there are big differences.

I hope this helps.=)

Kind regards;)

ck55

matic22 Your knowledge is always so encouraging to me. I was diagnosed with ILC 9 cm Grade 2, Mitotic Rate 1, Stage 3A, 2+ nodes, ER+ 100%, PR+ 100%. Had mast., dose dense AC x 4, Taxol X 4, radiation and am now on Femara.

 The 9 cm size has always freaked me out a bit, so your comment on size has helped. My question is, how important would you guess  the two + nodes are in my case? I know you can't predict anything,  I am just looking for an opinion based on you knowledge and experience.

Just looking for anything positive to grab onto!

Cyndi 

     

matic22

Dear ck55!

Welcome on these boards!

In your case we can see tipically non massive spread to lymph nodes even with large tumour size, because usually!(not always) is like larger tumour more chance to have nodes positive, but 2 positive nodes with a 9 cm tumour is not bed.,not at all!Try to focus on your good prognostic signs, for example, you have 100% ER and PR receptors, that is very very good, and mitotic rate 1, .This lobular had been growing for 10-15 years, I would say.Because the biology of this tumour is really slow and non-active.

You have done aggressive chemo, mastectomy, radiation and now on hormonal therapy.Focus on aggressive hormonal therapy.I would definitely do as much as possible in your case.For instance, switching from Femara after 5 years to Aromasin, because these two drugs have different mechanism of acting.You have to do hormonal therapy as long as you can.I would also consider of ovary removal or radiation to ovaries.

Less estrogen in your body, less  chance of spreading the cancer.

Stay healthy;:)Kind regards;)

Matic

mkl48

Why have overies out since she is post menopausal? At least it appears to be so? Beth

matic22

Hi Kmb50!

Well....if she is 100% postmenopausal, then there is no need to, but age 55 does not mean always a woman is really postmenopausal.

Of course, if she is, there is no need to.

Regards and luck;)

ck55

    

Good question Kmb50. YesI have been in menopause since my first chemo in Jan 07 (actually it was one year ago to day that I had my first chemo!). I am 53, so I am sure I was close to it anyway. Plus I assumed the Femara was taking care of any estrogen that was left?

paige-allyson

Matic-

I am new to this particular discussion and relatively new (in knowing I had it anyway) to ILC. I was dx in 5/07 with Stage 3A ILC, 6/17, nodes positive, the tumor was 3.2x2.5x1.7 cm. The lesion was predominently small size cells with rare tubular pattern and prominent, predominent "Indian filing"  but no evidence of signet cell features (Question #1- does this "rare tubular pattern" or other specifics have any major prognostic significance?). Among the lymph nodes that were positive, one palpable axillary node had been completely replaced by malignant cells and measured up to 6mm (Question #2 Is this an "extra bad" thing?) Other nodes ranged from micro mets to 30% replacement. Does this matter or is it the total nodes involved that is the main thing?

There was no evidence of direct lymphatic or vascular permeation by malignant cells.

Axillary Lymph node dissertion: Partial replacement of the largest lymph node in the dissection which measure 2.7 cm by metastatic lobular adenocarcinoma w/o direct extention to the adjacent adipose tissue or capsular transgression (involvement of one out of thirteen dissected lymph nodes in the axillary dissection alone). (Question 3- what does this last part about the 1 out of 13 nodes mean?)

The tumor was found to be ER+ 8/8, PR+ 6-7/8, HER2 -, grade 2

(This part I realize is good but any comments you have would be welcome).

I am going to run through this when I see my oncologist next month but thought I would get your thoughts if you would be so kind and have the time.

My treatment has included mastectomy (affected breast only), dose dense AC4/T 4, radiation x 33 including axilla area and supraclav node area. I was initally offered tamoxifen for 2 years followed by 5 Femara. I pushed to start Femara right away. I had been deemed menopausal prior to tx based on my estradiol levels despite having no change in my normal menstration- strange- huh?

 My onc agreed to the Femara with Lupron depot every three months as "insurance" that I stay in menopause.

Do you have any additional thoughts re: anything else I might benefit from. Are there any special prognostic factors bad or good in the pathology info I have provided.

Thank you so much for the time, effort, kindness and consideration you offer us here. Allyson

minuet

Happy New Years Matic and every one else.

In reference to the study you read of ILC compared to IDC

you mentioned Hormone -ve ILC had a worse survival than

hormone -ve IDC. How were these women treated? Did they recieve Chemo? ILC is often reported to have a lower grade which I read as lower mitotic count. Could it be that chemo doesn't work that well with this group of ILc  because they are not highly proliferic and those are the cells chemo works on???

I was 65 % ER + and 75 % PR + with a mitotic count of 1 or 1 per 10 HPF 400 field diameter and I always wonder if the chemo was killing any those hormone negative cells in my tumour. Matic ..in your experience are most ILC's of lower mitotic count?

You indicated that ck55 tumour was growing for 10-15 years. I had

a grade 2 (but low mitotic count )and the size was around 2 cm. Would mine have taken 10 -15 years to grow?

 If so it would have started growing in my late 20's or early 30's. That is when I was having  my kids. Does pregnancy play a role in the development of ILC?

Thanks so much Matic for answering our questions and sharing your knowledge of this disease. 

Minuet

matic22

Dear minuet!

Thank you so much for wishing a happy new year!I also wish you only best;)

Hormone positive ILC in that study had really good survival, not worse than hormone positive IDC,better survival than IDC, BUT hormone negative ILC had worse survival than hormone negative IDC.Those women were treated in majority with mastectomy and axillary dissection and then those, diagnosed after 1988. year, also had chemotherapy and hormonal tamoxifen.There were no AI back in then and majority of lobular carcinoma that were ER positive were not treated with chemotherapy.So, the comment at the end of study was also that lobulars were treated less than ductals in the past, today it is completely different. I also believe classical ILC with lower mitotic counts has to be aggressively treated with hormonal therapy rather than chemotherapy becase hormonal therapy gives us much longer remissions and quality of life than chemo,.Malignant cells become resistant to chemo drugs(and also to hormonal drugs) overtime, but as I have said those remissions with hormonal drugs are longer and better.

Well I have seen many path reports and I would say that most ILC are low mitotic rate, yes, but not all of them.some can also be mitotic 3 or 2.But the whole grade is in majority grade 2.That is the reason why I would recommend an oncotype analise to women with ER positive, stage i-ii cancers,BECAUSE grade 2 actually means nothing-it can be grade 1  or grade 3.grade 2 MEANS : I do not know.All these  our pathologist explained to me the other day. That is the reason why onco scores are important .grade 2 tumours belong either to grade 1 or to grade 3.I hope this is understandable.

Your tumour absolutely did not grow for 10-15 years, but I would say for 6-8 years, yes.Lobular carcinoma really grows very very slowly, especially ER positive low mitoses.The pregnancy does not role play in the development of ILC, but hormone replacment therapy does.BUT that is completely different thing.

And dear Allyson!

Well yes, tubulolobular cancer has better survival than classical lobular, but it depends on many factors, including positive nodes,...but it is almost grade I. because it forms tubules.Classical lobular does not form tubules, so you automitically get a 3points for tubule fotmation within the grade(grade= tubules 1-3, nuclear pleomorphism 1-3, mitoses 1-3).

Microdeposits in lymph nodes actually have more favourable survival than the whole replacement in the lymph node but this is not so important.other things are more important.Well, it means that 2.7 cm was the largest node, I believe, that included malignant cells of lobular breast carcinoma).

Those hormonal and grade 2 is good,.You have very high positive hormone receptors,(ER). and also PR are quite high.This is very good.You can do hormonal therapy.

I also think Femara would have better benefit in your case because of 6 positive nodes.I have to say your prognosis is favourable ,only bad thing are 6 positive nodes. that is the reason I would do hormonal therapy as long as you could, at least for 7 years,.Maybe after 5 years,you could switch to Aromasin or maybe in 7 years there will be another good drug for these tumours. so hang in there.

And do not worry about cancer .,..,just let it go away.

Psychologic aspect is also very important!

Remember that and good luck;)

KInd regards.,

Matic;)

gracejon

I asked my oncologist about my original path report from 2004.  Grading was not done by this institution at the time and doctor said never has seen anything but grade I with these tumors since they are slow growing.  I had a negative PR and a 19% ER report.  Doctor also said the ER positivity may mean that other parts of the tumor maybe more positive but the area they tested was pretty low therefore I have been on an aromatase inhibitor.  I do have 3 spots in my liver discovered on CT in December.  They are very small and docs current recommendation is to rescan in 3 months to check if there is any growth.  I am a bit unnerved by waiting but clearly can't fuss about the recommendation.  Nobody would listen.

paige-allyson

Matic-

That you very much for your input and encouragement. This is the first I'd heard of tubulolobular vs classical- no one ever mentioned this to me. I am very glad that I pushed for the Femara- feel comfortable with this choice- more than I would have with the tamox. I will definitely plan to stay on hormonal therapy for as long as possible- also doing my own "hormonal therapy" via exercise and working to get to the low end of my healthy weight- I understand both of this can lead to decreased estrogen availability.

I will take your advice re: not worrying about cancer and "letting it go away." Sounds like a plan! Hopefully the cancer will be on board with this idea  and will find something else to do (die? turn into normal cells?). Kind regards to you as well. Thank you again and I will continue to follow this thread with interest. Allyson

marshakb

Hey Matic, it was nice chatting with you a couple of weeks ago.  I started a post in Moving Beyond but thought I'd ask this same question here:

I was dx'd Dec 2006, right mastectomy that same month.  Feb I started 4 A/C chemo followed by 4 taxol, ending in May.  Then 33 Rads ending early August.  In October I had a prophy mast on the good breast.  No recon.  Now it is just over a year from dx and I am wondering about follow up.  I have no health insurance and alot of bills from 2007.  The end of this month I have follow up visits with BOTH the med onc and the rad onc.  I also see my PCP every six months.

I found this recommendation from ASCO (American Society Clinical Onocology) regarding follow up visits:

Results: The evidence supports regular history, physical examination, and mammography as the cornerstone of appropriate breast cancer follow-up. All patients should have a careful history and physical examination performed by a physician experienced in the surveillance of cancer patients and in breast examination. Examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter. For those who have undergone breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Thereafter, unless otherwise indicated, a yearly mammographic evaluation should be performed. Patients at high risk for familial breast cancer syndromes should be referred for genetic counseling. The use of CBCs, chemistry panels, bone scans, chest radiographs, liver ultrasounds, computed tomography scans, [¹⁸F]fluorodeoxyglucose-positron emission tomography scanning, magnetic resonance imaging, or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine breast cancer follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination.

Conclusion: Careful history taking, physical examination, and regular mammography are recommended for appropriate detection of breast cancer recurrence.

So...... no labs, tumor markers, scans etc are recommended.  My PCP is the hubby of my best friend and he sees me without charge.  Am I crazy to be thinking of canceling my appts this month with the oncs?  The last time I saw my med onc (Oct) he didn't  lay a finger on me.   Just talked, said all my tests were normal.  I had a base line pap, u/S and trans vaginal u/s in August since I am on tamoxifen. 

I would love some feedback.  Thanks, Marsha

matic22

Hi dear Marsha!

Well I know it is hard when you finish all treatment of breast cancer but you know what-just go through it.Start enjoying a new life-a life after breast cancer!It would go better, you will see.As the time pass away it is really!!!! better. About follow ups I would strongly recommend to do them for the first 2 years every 4-6 months, and in every follow up there must be done a physicial exam of your breast, and also lymph nodes of all body, heart and lung avscultation , palpation of abdomen, and so on.BUT!!!! many times the recurrences are not seen or heard on these tests, I believe the metastases have symptoms, but not always,. so this can be really hard. I believe that tumor marker has to be done once a year, at least for the first three years after diagnosis because it can help us,especially for ER-positive tumours.And the most important thing is to listen to your body-if you think something is wrong, you should go to do more tests, for example an US of your liver.Or if you have pain in your bones, you should have bone scan-you just have to, because the first years after mastectomy are the most important.The majority of recurences occur in the first 2-3 years after the operation, then it goes down every year.Of course it can happen after 10 years too, but rarely!

So, if you know PCP personally, then go to him to appointments, do not go to the oncologists, if you only talk to him/her, but if you think you have some problems, go to the oncologist and ask him/her to do more tests and blood work.

Really be a listener to your body, and do not bother yourself with cancer.You have done everything you could. So, keep this in mind-I will be really fine, I will be!

My mother is now 4 years after diagnosis and she has an appointments every 8 months.I think next year she will start with an one year appointment.And I think this is just fine.If she has some concerns, I tell to some doctors I know and they just do more tests that everything is okey.

Kind regards and I will keep in touch:)

Bye bye

Matic