Final study results!!!!!!!

nash · September 2007

Hi, Matic--

Thanks again for answering all our questions. I have a question about ILC mets. You said they grow in sheets, like the primary, which makes sense and I suppose is why the mets tend to show up in unusual spots. My question is--do ILC mets show up well on CT? What about PET scans? My fear is that although my scans were clear, perhaps the radiologist wasn't looking for the right sort of thing.

matic22 · September 2007

Hi dear nash!

Thanks for a very good question!

ILC tends to metastasize really to very unusual places such as pleura, peritoneum, ovaries,uterus, but also liver,bones!!!!It likes very much abdomen and retroperitoneum so be aware of that!DO THE ULTRASOUND OF ABDOMEN IF YOU THINK SOMETHING IS STRANGE IN THERE because ILC METS tend to be hidden like primary ILC tumour is!!!!If you are not aware of that, the diagnosis can be missed!!!!!I mean the diagnosis of ILC mets.It is very hard to treat ILC mets when they are dispersed all over the abdomen as you know because you just can not surgically remove all of abdomen!

Another your question was about radiologic findings of ILC.YES!!!!ILC mets are found with CT .I think CT is the best radiographic method for detecting ILC mets in lungs, for example.But for liver metastases for instance it is very good ULTRASOUND OF ABDOMEN, because it always shows you retroperitoneal place and also basal pleural place. ILC metastases can also be found in ureters!!!!!So when you go to US please tell your doctor that your diagnosis is INVASIVE LOBULAR BREAST CANCER and tell him/her to look well at places described above!!!!

You really have to know your type of breast cancer because that way you will know whAT YOU HAVE TO BE AWARE OF.ILC mets can also be silent for a very long time, that is the reason some follow up checks with US of abdomen are recomended.If your doctor tells you you have no indications for that, just lie to them and say : I have pain in abdomen, for instance,you will do best for yourself becase the doctors unfortunately do not believe to patients any time.That is really sad!

I hope you will all stay healthy!

matic22

nash · September 2007

Thanks for the info on the abdominal US, matic. I didn't even think of requesting that. I may have to develop a stomach ache soon. Sealed

One more question--would mets to linings, like the retroperitoneal area, etc., light up on PET?

minuet · September 2007

Thanks Mattic for answering my questions. I have more. I'm so confused by pleomorphic ILC. Is it determined only by grade?

That is if it is grade 1 its classical and grade 2 and higher its pleomorphic. If this is the case than its very common as I read most ILC are grade 2 (~40-50 %). I've also read that pleomorphics, that are more aggressive ,are the ones that are HER 2 positive and/or hormone negative. My pathology report does not indicate pleomorphic but my grade was 2, so I'm just curious if it just based on grade and not other features. Thanks so much. When I asked my oncologist he just dismissed it and said that my tumour is comparable to a grade 2 ductal and is treated the same with chemo and hormone therapy. Thanks again,

Mo

matic22 · September 2007

Hi nash!

The big problem about PET is that it shows us places of high metabolizing glucose, and believe me if I do this method to any patients with breast cancer I will find in EVERY BODY these glucose findings, so it is actually confusing, do you understand me?And if you do PET scan before surgery then automatically you will get every woman with stage 4 breast cancer because EVERY INVASIVE BREAST CANCER ACTUALLY IS ELSEWHERE IN THE BODY(some malignant celss), but they die eventually, they even die with good immune system.I hope you get it what I mean!So, I would not do PET scan to any woman with breast cancer.Because even if there are some cells it does not mean they will develop metastases some day.

I hope I have answered to your question.

Matic22

matic22 · September 2007

Dear Mo!

IT IS NOT A GRADE OF THE TUMOUR THAT IS THE INDICATOR OF LOBULAR TO BE CLASSICAL OR PLEOMORPHIC.Classical invasive lobular is mostly grade I and grade II, but it can also be grade 3, if you get for tubules 3, nuclear pleomorphism 2 and mitoses 3, you are grade 3 but your cancer is still classical lobular.On the other hand pleomorphic can also be grade 2 or 3, and can also have these features>: tubules 3, nuclear 2, mitoses 1 and is still pleomorphic.What I want to say is that it is the type of lobular that is important and the growth of tumour cells and pleomorphism of tumour cells.So, these things are like that>:)

Thanks for the question!

P.S.:You can also have one tumour that is combined ILC and LCIS, and inside of this tumour ILC is classical lobular, LCIS is large-cell variant(pleomorphic) but the prognosis of this cancer is based on invasive component of the tumour!So, hang in there!;)**

I will keep in touch!

Bye bye

Matic22

minuet · September 2007

Hi Mattic;

Thanks for answering my question...I think I understand now. It 's the appearance of the cells themselves, size of the cells and how the cells are growing not the grade of the tumour that determines the variant in lobular. Thank-you for clarifying this.

Best wishes to you and your mom.

Oh and if you have any comments about hormone therapy in ILC ..which one may be more effective Tamoxifan or AI's and should hormone therapy be extended beyond 5 years. Any research results in that area? Thanks again.

Mo

matic22 · September 2007

Hello dear Mo!

A very good question!I would say the best treatment for higly ER and PR hormone positive ILC is: 2 YEARS OF TAMOXIFEN, then if you are still premenopausal OVARIECTOMIA - surgical removal of ovaries or radiation therapy to ovaries!Then SWITCHING TO AI, exemestan I would say , for 3 years, and then I would still be on some hormonal therapy for another 2 years, anastrozol or maybe even better letrozol (Femara).Next year one research will be finished about hormonal therapy more than 5 years with AI.I believe because ILC usually comes back after 5 years of surgery, it is very good to be on some hormonals for a long time!!!!!for at least 7 years and with DIFFERENT ANTIHORMONALS NOT WITH THE SAME !!!!

I hope I answered to you:=)Kind regards!

Matic23

nash · September 2007

Mo has a good point. Is all pleomorphic ILC more aggressive than classical, or just the pleomorphic that is HER2+ or ER/PR-? Does anyone know for sure? Sounds like they need to do more research in that area. I wonder about it all the time, since mine is pleomorphic. It's HER2-, ER/PR+ like most lobular, so does that make it the same level of aggressiveness as classical? My docs think it's more aggressive than classical, so that's how we're approaching it with the chemo. It really makes one's head spin....

LizM · September 2007

Matic, I find your posts very interesting. I am interested in your statement about switching up hormone therapy. I have been very aggressive with my hormone therapy in that I was on Tamoxifen for 3 months, then had an oophorectomy (49 at diagnosis so ooph was no big deal but was premenopausal at diagnosis) and then put on Arimidex for a year. I switched to Femara after my year of Arimidex due to my research indicating Femara could possibly be more effective. You made the statement about going on Arimidex or better yet Femara. What did you mean by the statement. Are you also finding in your studies that Femara is more effective? Why do you think it is that more oncologists put those with ER/PR ++ mets on Femara than Arimidex? Just makes me wonder. Anyway, thanks so much for sharing your research with us.

matic22 · September 2007

Dear LizM!

hELLO!Thanks for post!

I have seen one study in which there has been put down that Femara (letrozol) lowers levels of estradiol more than arimidex(anastrozole).However both drugs are great!I wonder if in the United States you can alone switch from one drug to another or your oncologist does it??

Could you please be so kind and ask your oncologist (when you see him/her next time) what about exemestan?

And another your question was about metastases: I think that is the reason , but the reason I PUT DOWN THAT STATEMENT IS because Femara is more tested as a "last" line of treatment , I mean we all know that it is prescribed for 2 years after 5 years of tamoxifen.So that is the reason why I posted it so.But I believe that the best choice of treating tumours that have both very high levels of ER and PR, is the following: 2 years of tamoxifen(if you are premenopausal), then oophorectomia bilateralis and then you become postmenupausal so you must! switch to one AI, I think exemestan is a very good drug-because it is steroidal INACTIVATOR, anastrozole and letrozol are aromatase INHIBITORS.SO ,do you see a difference?Inactivation is better in that way because it means activation never begins, but that is so and so---in literature there is no data of these things,unfortunately.So, to then I would stay 3 years on Aromasin, for instance, or at least 2,5 years, then I would switch to Femara for at least 2 years.So, this is 7 years of hormonal therapy which is a very important treatment for ER/PR positive breast cancer, especially lobular carcinoma!Please ask your oncologist about 7 years of adjuvant hormonal setting, will you?It would be in my pleasure to know this because I also want for my Mum to do best with hormonal therapy as long as we can.It is very important for long-term prognosis!!!!

Kind regards to all of you, you are very kind and good ladies.How are you, anyway, how many years is now from your diagnosis, dear LizM and SherriG?What about your friends with lobular, are they fine?I would love to hear some successful stories!

Bye, I will be in touch:)Matic23

matic22 · September 2007

Dear LizM!

hELLO!Thanks for post!

I have seen one study in which there has been put down that Femara (letrozol) lowers levels of estradiol more than arimidex(anastrozole).However both drugs are great!I wonder if in the United States you can alone switch from one drug to another or your oncologist does it??

Could you please be so kind and ask your oncologist (when you see him/her next time) what about exemestan?

And another your question was about metastases: I think that is the reason , but the reason I PUT DOWN THAT STATEMENT IS because Femara

is

LizM · September 2007

Thanks for answering my questions. I do believe that here in the US one would have to ask their oncologist to switch since he would have to write the prescription to change meds. My oncologist had no problem with my asking to switch to Femara. He said it would not hurt me in any way to switch. He was aware that Femara had been shown to reduce estradiol lower than Arimidex and Aromasin; however, he also said that the clinical siginificance of lowering estradiol is unknown. He also thought I would have worse side effects with Femara due to lower estrogen levels but so far I have not noticed any difference.

You mentioned your theory for premenopausal women on the best course of hormone therapy but what about postmenopausal women. Most postmenopausal women start out on an AI and are staying on that same AI until 5 years unless they switch due to side effects.

wallycat · September 2007

Matic,

Your comment that lobular will come back after 5 years is very upsetting...I know you don't make the rules, you just report them

I wonder how this applies to women who have both breasts removed (like myself).

Will the 5+ year recurrence then go to a different organ??

I've asked my oncologist about ovarian removal and they think it is very drastic.

Also, I believe my pathology report also indicated pleomorphic, but the mitosis rate was 0-1.

So even though it is a very low mitosis, should I consider my tumor aggressive because it was pleomorphic?

I sure wish they had a cure for this crap!

Thank you for sharing all your knowledge and experience.

I just gave blood to determine if I am a tamoxifen metabolizer and we will see if I stay on that or move to more drastic measures.

TenderIsOurMight · September 2007

Dear WallyCat and Matic,

WallyCat, I must have missed what you saw about the 5 years reference; I keep scrolling up and down and maybe it's on a former page, dah. But WallyCat, if you have had bilateral mastectomies for ILC and your nodes were negative, and your original tumor favorable (that low mitotic rate is right on!) then this is all in your favor. And it's good you had your Tamoxifen phenotype done (I wrote to you on your original post about inquiring how it all turned out): this test should put you and your doctors in the know! Try not to worry to much about metastasis, WallyCat. All BC can go that way, and our sisters with mets will tell you how many treatments there are and from what I read, many, many more on there way down based on molecular knowledge (cellular interactions themselves, which is as low as you can go, imo,oops, except for actual electrons and neutrons and....). So try not to be held hostage, which is not to dismiss your legitimate concern...

Matic, if I may add regarding your questions, as LizM and others have said, our doctors write the prescriptions here. Yet advocacy for self is highly regarded in American medicine, and w.r.t AI's, since there will be confusion of which is best, for how long, etc.. due to the great group of women soon facing that 5 year point, I believe most physicians will be open to their patient's suggestions as to their preference. A knowledgeable patient presenting research data is one who helps argue her point; self advocacy is more respected still BECAUSE partially we do not have, as yet, socialized medicine.

As to the 7 year question: yes, this is now often read and I point you to "Breast Cancer Updates" to read through and you will see 7 years repetitively mentioned: http://www.breastcancerupdate.com/bcu2007/3/default.asp

As to Exemastane: yes, there too, I have recently heard my oncologist specifically point out it's steroidal properties (as an inactivator as well) as read of it's difference. Yet too, Fulvestrant as a steroid complex, results in the estrogen receptor inactivation and destroys thereby the intracellular transcription which normally follows when activated. So, I believe we here will also be hearing more of this drug too, as alternative to an AI.

A pertinent remark/question worth your comment, should you have time and interest, is how best to deal with any ER+ dormant cancer cells from potential "re-awakening" should their soothing low estrogen state change during vacations from hormones or time to onset due to differing action by other hormonal types, as in steroidal inactivators. Now this is very controversial, so I do NOT wish to frighten our wonderful ladies here. Perhaps knowledge gleaned will allow adjustment in our treatment favorably.

Thank you for your gift of sharing your knowledge and time, Matic,

Tender

Elizabeth06 · September 2007

Hi Matic,

I'm also concerned reading the probability of lLC returning after 5 yrs.

QUOTE ("I believe because ILC usually comes back after 5 years of surgery, it is very good to be on some hormonals for a long time!!!!!for at least 7 years and with DIFFERENT ANTIHORMONALS NOT WITH THE SAME" !!!!)

This info is bothersome to me because I was diagnosed with a classical lobular, node neg, super ER+ and have been on Arimidex for nearly 4 yrs and doing great. Should I be waiting for the "other shoe to drop"?...is 5 yrs the magic cut off for ILC to return?

Also a ? about the possible areas of spread...

QUOTE ("ILC tends to metastasize really to very unusual places such as pleura, peritoneum, ovaries,uterus, but also liver,bones!!!!It likes very much abdomen and retroperitoneum so be aware of that!DO THE ULTRASOUND OF ABDOMEN IF YOU THINK SOMETHING IS STRANGE IN THERE because ILC METS tend to be hidden like primary ILC tumour is!!!!If you are not aware of that, the diagnosis can be missed!!!!!I mean the diagnosis of ILC mets.It is very hard to treat ILC mets when they are dispersed all over the abdomen as you know because you just can not surgically remove all of abdomen! Another your question was about radiologic findings of ILC.YES!!!!ILC mets are found with CT .I think CT is the best radiographic method for detecting ILC mets in lungs, for example. But for liver metastases for instance it is very good ULTRASOUND OF ABDOMEN, because it always shows you retroperitoneal place and also basal pleural place. ILC metastases can also be found in ureters!!!!!So when you go to US please tell your doctor that your diagnosis is INVASIVE LOBULAR BREAST CANCER and tell him/her to look well at places described above!!!!)

My onc said I had a good prognosis, should I believe him? I'm really frightened now approaching the 5 yr mark. Is the above scenario what my future holds?

Thanks

Anonymous · September 2007

Elizabeth--please don't despair about the 5 year mark. MY mom is coming up on her 21st year as a survivor of ILC (stage one, negative nodes) and doing very well. (lumpectomy, radiation, tamoxifen). She has lymphedema and has had colon cancer twice, but never a recurrence of breast cancer.

matic22 · September 2007

Hello to all of you!PLEASE DO NOT BE FRIGHTENED ABOUT THOSE POSTS WHERE I PUT DOWN ABOUT LONG TERM RECURRENCE OF LOBULAR.I will explain what I actually meant.

Firstly, answer to dear LizM!

Postmenopausal women with a very low risk of recurrence can be given tamoxifen or AI for 5 years, the others with high risk of relapse of cancer need immediately go to AI (Arimidex) for 5 years, and maybe later on even for another 2 years of another AI or something else(there has been no researsh done yet on these, I mean the results are not published yet because the research is still going on).I hope I have been understood:)

Dear Wallycat!

What I meant about that 5 year mark about ILC, was that mostly lobular carcinomas tend to spread after a long time after the diagnosis because usually it is a slow growing cancer and highly ER+!Mostly if it does!But most lobulars NEVER metastasize because the patient dies of other casuses(old lady), or something else.I especially pointed out that in the past lots of ILC tumours were not treated agressively as ductal, because of slow mitotic growth and so on, and after many years the disease recurs, becaause they did not know the biology of the cancer, the whole cancer, not only of ILC.Do you all ladies understand me now what I meant?Of course the agressive ILC tumours can also and they actually do recur even in the first 2 years after the diagnosis(I have seen some patients, but not many) and they metastasize to orbita!But those tumours were mostly grade 3 lobulars and they did not get any chemo because they refused it.

SherriG:Thank you for your posts, dear Sherri!"Mum is doing great.She has some problems with asthma(bronchial asthma) but on the other hand is fine.In october she has some appointment with her surgeon of breast.

This is a very good question!E-cadherin is really a Ca-dependent cell-cell adhesion molecule.It is unexpressed in the majority of ILC cancers.That is the reason why lobular carcinomas grow in the single Indian files and not as a mass, so now you know it why so;)It does not have anything to do with the prognosis because in all ILC e-CADHERIN IS NEGATIVE, so the spread of lobular carcinomas has actually nothing with this, but in other cancer it has.So, do not worry about this protein.It is tipically for iLC to be E-cadherin negative.I have read many research of it ,even in context with prognosis.

Elizabeth06:Again, I feel very sorry for misunderstanding about 5 year mark and am really sad about that.We have misunderstood each other.What I meant was that in the past when there was no good systemic treatment, the lobular carcinoma relapsed after many years, usually long after 5 years versus ductal breast cancer that mostly returned in the first 4-5 years.Of course some ILC relapse very early in the course of the disease.But as you know EVERY PERSON HAS A DIFFERENT KIND OF DISEASE, EVEN IF YOU HAVE COMPLETELY THE SAME PROGNOSTIC BIOLOGIC FACTORS, YOUR PROGNOSIS CAN BE TOTALLY DIFFERENT BECAUSE THERE ARE SOME OTHER ISSUES HERE OBVIOUSLY(immune system of the body, positive thoughts and so on....).So do not bother yourself with next year mark, when it is going to be 5 years since xour diagnosis.I really am sure you are going to be fine, because your prognosis is really very very good.So please stay calm and srong as you are;9Will you;:)?The post about ILC metastases is completely true -I have just read what I had written the other day.What is strange to you about that?Just write to me...

Oh, and if you have any interesting articles (any of you)about lobular, it would be in my pleasure to get them because I really am doing a lot of research in this type of breast cancer. Just let me know.Kind regards to all of you, wonderful ladies.Be brave and stay healthy and strong:)We are together;:=)MATIC

Snewl · October 2007

I brought out my path report to check it over (it's been awhile) and e-cadherin was positive and the type was listed as tubulolobular. I read somewhere that in tubulolobular breast cancer, e-cadherin is usually positive but it still has the indian file growth of the pure lobulars. Also, mitotic activity was low (1) and the grade was 1. I was dx'd a stage 3 with 9 positive nodes, so I try to find cause for optimism where I can.

Shirley

LindaLou53 · October 2007

Dear Matic,

Thank you for taking the time to share your research and answer so many questions! I would like to get your opinion about the difference between a "classical lobular", "pleomorphic lobular" and "non-classical lobular".

Can a lobular cancer be non-classical and also NOT be pleomorphic? I ask this because my cancer was Grade 1 with no tubule formation (3/3), minimal nuclear pleomorphism (1/3), and 5 mitotic count per 10 high power fields (1/3) for a total score of 5/9 making it Grade 1.

My Estrogen receptor was positive 94% but my Progesterone was negative 2%. Her-2 negative. Normal dipoloid DNA pattern. My path report also notes that the E-cadherin is negative but interesting that my Progesterone is negative and I have an increase in the Ki-67 which shows medium tumor proliferative activity.

I had a 5.1cm lobular mass with all 3 levels of nodes removed during my bilateral mastectomy. All 23 nodes removed were positive for cancer plus had extracapsular extension in the axilla area with many bursted nodes.

My oncologist says my lobular cancer is not purely classical because of the negative progesterone. But I do not believe I am pleomorphic either. How would I fit into the lobular study types you have seen in your research?

I took Tamoxifen for just over 1 year back in 2001 for an invasive ductal cancer. I then went off all hormonals for a little over 3 years until my new primary Lobular cancer was found in the other breast. After intensive chemo and radiation I am now taking Aromasin and have been on it now for 1.5 years. The 2 year anniversary of my Lobular diagnosis and surgery will be in December this year.

Any opinions you can offer are much appreciated!

Matic... you also asked for articles on Lobular cancer. I try to keep a file of such articles so here are some links you might find interesting.

http://www.nature.com/modpathol/journal/v18/n5/full/3800273a.html

http://annonc.oxfordjournals.org/cgi/content/full/17/8/1228

http://www.ajronline.org/cgi/reprint/182/3/745

http://www.edu.rcsed.ac.uk/Case%20Presentations/CP41.htm

http://www.guardian.co.uk/medicine/story/0,,1963324,00.html

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1937002

http://www.medscape.com/viewarticle/440969

http://www.medscape.com/viewarticle/518230

This article is a little dated and I don't agree with it's conclusion but it does provide alot of the biological data about lobular characteristics.

http://breast-cancer-research.com/content/6/3/R149

LindaLou

nash · October 2007

Thanks for posting the links, LindaLou. I was especially interested in the article about the FGFR1 gene--hadn't seen that info before. I'm going to ask the genetic counselor who helped with my BRCA testing if she knows anything about the gene. I wonder if it's too new a discovery to have a standard test for it.

matic22 · October 2007

Dear Shirley!

You have been lucky somehow because tubulolobular carcinoma has a very good prognosis, but because it was stage 3 with 9 positive lymph nodes I believe you had chemo and agrressive treatment.Just stay calm and enjoy your life.I think you will be fine.It is true that in tubulo-lobular cancers E-cadherin is usually positive, because it resembles tubular breast carcinoma, which also has an excellent survival.I wish you luck and stay healthy.

Kind regards!

matic23

matic22 · October 2007

Dear LindaLou53!

I remember you and your path report well.I strongly believe that your lobular carcinoma was in the breast even when ductal carcinoma was discovered, I believe it and then of course tamoxifen did its job to lobular as well but of course the success is when you excise the cancer out of the breast, if you leave it in there, it is not a good outcome.

Classical lobular carcinoma consists of small cells that are dispersed in the fibrous stroma within the breast and their mitotic growth rate is low, this is classical lobular, which tends to have a long free interval.Pleomorphic lobular carcinoma consists of large, pleomorphic cells with large nucleoles and usually higher mitotic rate,but not necessairly. The term non-classical is used for every other lobulars that are not classical.We know solid variant, tubulo-lobular, signet-ring cell, and maybe I have forgotten some variant as well.Tubulo-lobular and classical lobular carcinomas have better prognosis as other variants, especially tubulo-lobular.Oh and I have forgotten alveolar type and trabecular type, which have the same prognosis as classical type, I believe.So, my answer to you would be:YES, lobular can be non-classical and non-pleomorphic, the other variants I have put down.What is put down in your path report?It should me mentioned the exact type of the tumour!!!!!!

Ask your oncologist about that!

It is great to have grade I lobular carcinoma, and low mitotic scores andso higlhy ER ,HER-2 NEGATIVE, even with 23 positive nodes.I believe Aromasin is a very good drug for you, but I would recomend to you to stay on antihormonals for more than 5 years, at least for 7 years with Aromasin and Femara.Maybe there will be some new drug for hormone-dependent breast cancer in the near future when you will be aproaching 5 years of hormonal therapy.Could you be so kind and writing what were your tumour characteristics of your ductal breast carcinoma in 2001?

Thanks and I wish you lots of healthiness!

Kind regards:)

Matic23

NancyNY · October 2007

It is very kind of you Matic to keep us all up to date. I just went back to my pathology report, and am getting nervous. It said I had 2.3 cm ILC cancer involving the ducts. Though it is highly Est pos (more than 90%) as well as Prog. + 90%. No lymph nodes, no vascular invasion. BUT, the tumor had clasical and pleomorphic cell and a proliferation index of 35%. I am taking arimidex. Is a proliferation index the same as mitotic rate. Does that mean I should be even more agressive and insist on more than 5 years of hormone therapy. My hospital, as well as Sloane Kettering told me that they did not grade lobular tumours. Sloane Kettering said they do not use a proliferation index because it is too subjective, but what you said about mitotic index has me nervous. Matic, thank you so much for sharing your information with all us lobular ladies. I hope your mother continues to do well.

nash · October 2007

Nancy, mitotic index is part of the modified Bloom Richardson scale, and is scored 1, 2 or 3. So a proliferation index of 35% is not the same as mitotic score. I don't know anything about proliferation indexes, though. I'm sure Matic will be along soon to clarify.

LindaLou53 · October 2007

Dear Matic,

Thank you so much for your response and good information. Yes, I agree and my doctors have also told me I had the Lobular cancer in the left breast at the same time I was being treated for the Ductal in the right breast in 2000. It was just never picked up by mammograms, ultrasounds or physical exams. My pathology report for the Lobular cancer in 2005 just calls it a T3N3a "Invasive Lobular Carcinoma". So I don't know if it is still considered classical or not with the negative Progesterone.

My cancer in 2000 was staged as T1cN1 Stage IIA 1.2 cm Invasive Ductal Cancer of the right breast. Strongly ER/PR positive, Her-2 negative, Ki-67 greater than 15%, plus focal DCIS and LCIS. I had a lumpectomy and SNB with removal of 6 nodes and 2 nodes were found to have micromets by immunohistochemistry. I did 4 rounds of Adriamycin/Cytoxan and then 4 rounds of Taxol plus 37 radiation treatments to right breast and lower axilla.

After my Lobular diagnosis in Nov 2005 I decided to have a prophylactic mastectomy of the right breast along with a modified radical mastectomy of the left breast. The path report on my right breast came back with no signs of any residual Ductal cancer at all so it seems my treatment in 2000 was very effective for that. I am sure that the chemo and tamoxifen in 2000-2001 slowed down the growth of my Lobular even though we did not know it was there.

I definitely plan on staying on the hormonals just as long as I can until something better comes along. So far I am tolerating the Aromasin just fine other than mild joint pain and hand stiffness. My only other ongoing BC related issue is the stage 2 Lymphedema I developed in my left arm following the total axillary dissection. I am still proactive and positive in my approach to BC though and have every hope that I will be around for a long time to come!

Thanks again Matic for all the help you provide to us here!

LindaLou

Fitzy · October 2007

Hi Sherri, glad you are still doing well.

Thanks Matic for the information re: ILC prognosis. It's great news for me as I was dx just over 3 yrs ago, with stage 3 ILC, a large, lazy mass, 5 nodes, extra capsular but no Vascular invasion, very er/pr+, low mitotic count. My onc here in Australia put me straight onto Femara after 6 mths of TAC and prior to surgery and rads. She had to fudge things a little and write it was advanced BC so I could get the pharmaceutical benefit, i.e. only pay AUS$30 instead of $200 per month! Freaked me at the time reading I had Stage 4 when I didn't! I think she just knew of the early studies with Femara and took a "punt" that it would be good to start straight away. Retrospectively, I think she may have been right.

Hope all the other ILC/Stage 3 women are going well

nosurrender · October 2007

Fitzy, thanks for this post! I was dx'd with 4+ nodes and extranodal extension too. Glad to hear you are doing well!

LizM · October 2007

Nancy, I also had a high KI-67 rate that really spooks me. My biopsy showed a high KI 67 of 30% but my final pathology showed grade 1 with a low miotic rate. I want to think that my tumor was low grade and slow growing but that biopsy report haunts me. I did have a 2.1 cm tumor with ILC and IDC and DCIS and LCIS and one positive node so I consider myself to be at an intermediate risk of recurrence and plan to take hormone therapy for as long as they will let me. I was very aggressive with my treatment and am now on Femara which does give me peace of mind.

matic22 · October 2007

Dear all ladies here!

I am in a hurry so I will anwer all questions to you tomorrow!I just wonder what do you think of oncotype D??Is it good test?I wonder if we could send my mum"s tumour to the USA to make that test.I have spoken to our pathologist and she says it can be done.Could you please tell me what your oncologist says about it?Is it more predictale than classical prognostic factors of breast cancer?If it is , then I will do this for my mum!

KIND REGARDS!;)

Final study results!!!!!!!

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