Final study results!!!!!!!

matic22

connihear!I can not answer to your question, of you have classical or pleomorphic.Because there has to be put down on your path report, for instance>: Diagnosis of my mum: Invasive lobular carcinoma, classical type and massive lobular carcinoma in situ, classical type and large-cell type, grade of Bloom-Richardson-Elston II. (tubules 3, nuclear pleomorphism 2, mitoses 1).Hormone receptors highly positive (90%), PR also (80%).HER-2 not amplified(0). There are also some microscopic focuses of invasive lobualr carcinoma in the inner lower quadrant of the tumour.The size of the whole tumour (with in situ tumour) is 3x1,5x1 cm.

So, that is the diagnosis of my mum, for instance.So, in the path report there has to be the type of the tumour and it has no association with grade.Classical lobular can also be grade 3, but very rarely and pleomorphic can also be grade 2.

Kind regards:) 

matic22

hi nash!

The other day when I talked about pleomorphic lobular I did not mean that BRCA1,BRCA 2 would be involved in this.Maybe also, but I meant that there has to be something in genes of pleomoprhic lobular , I mean in pathway of lobular tumours that go to pleomorphic morphologic structure. I am not sure if I make myself clear?

i hope i do.!;)bEST WISHES! 

matic22

DEAR TRIGEEK!

I think that in your case the other axillary lymph nodes would be negative.So, focus on chemo now and if you have to go through taxanes, I would recommend docetaxel, not taxol.tAXOL IS not going to be so effective to you, but Taxotere is.But on the other hand I would recommend to you chemo EC, epirubicin (because it is more effective and less toxic than Adriamicin) and ciclophosphamid.i think for these tumours it is enough, I would never give taxol for HER-2 negative tumour.Ask your oncologist about that. I mean...if you go for taxanes , go to Taxotere not Taxol because the recent studies have shown taxol is not beneficial for these tumours,.

My MUM would also do it so .

Kind regads:) 

matic22

Dear Laura!

Well, actually the hematoma can be the reason for not counting the right mitotic within the carcinoma. But however as far as I know you have had multifocal carcinoma, so it can be measured within the seconc focus or the next one if there was INVASIVE CANCER, not in situ carcinoma. In situ lobular is not cancer!!!!I hope this helps=) 

matic22

dear israel!

Well, I do not know what grade to fill it the adjuvantonline,because it should have been noted in the path.But according to the other pathological findings I believe your grade was I or MAYBE II.:=)kind regards! 

matic22

I HOPE I ANSWERED TO EVERYONE:)))))

israel

hello matic 22

i wonder about:

in the SLN 1 micrometastasis <0.5mm (is it involvment nodes - 12

 nodes are clean after second surgary of axillary nodes)

thank you

matic22

hi israel!

I do not understand your question---you wonder what?about prognosis?I mean...

It means you have had 1 lymph node positive...The prognosis is good despite having 1 lymph node positive. In the past it was believed patients with positive lymph nodes had worse survival.In some way it is true, but the most important thing of every cancer is its biology. I have seen many patients with negative nodes who died of disease and many with many positive nodes who are alive after many years or have metastases in the bone, for instance that can be controlled with specific therapy, for example with hormone therapy.

I hope I have given you the correct answer.:=)

Mizsissy

Hi Matic,

It is so nice to have someone on the boards here who can answer our questions intelligently.  I know you are getting deluged, but I have a question too, in particular because you said that women who were ER positive without being PR or HER positive were at highest risk of recurrence.

I was diagnosed last year about this time and had a lumpectomy and reexcision.  The first excision revealed two related stellate tumors, IDC, Grade 3, probably connected in some way, that were identical histologically, although only one was visible on the mammogram.  The visible one was 1.7 x 1.6 x 1.3 and the invisible one was 1.3 x .8 x .7.  Both were very strongly ER positive and weakly or equivocally positive for PR.  Negative HERC. The second excision came back completely clean.  Eleven nodes were all clear as well.

There was also a third area of DCIS found in the first sample that my doctors told me they were not concerned about. 

Oncotype score was 36, which was translated to a 25% chance of recurrence with hormone therapy and no chemo.

I am post menopausal and am taking no tamoxifen, but plan on five years of Femara (Letrazole).  I had four rounds of dose dense Taxotere + Cytoxan, and radiation. 

I am very concerned about my high oncotype score and your comment about that  being just ER+ was not a good prognostic factor.  I am convinced that this cancer came about as a results of the numerous synthetic estrogens my body was subjected to in the womb (DES), drugs to boost fertility, as well as HRT (estradial w/o progesterone!).

Can you offer me any realistic probabilities for recurrence and the best way to avoid it?

Mizzy 

nash

Matic--

Regarding BRCA/pleomorphic ILC--here are some of the articles I read that discuss the connection between BRCA2 and pleomorphic ILC:

http://www.qimr.edu.au/research/labs/sunill/index.html

http://www3.interscience.wiley.com/cgi-bin/abstract/75500597/ABSTRACT?CRETRY=1&SRETRY=0

http://jco.ascopubs.org/cgi/content/full/18/suppl_1/107s

matic22

Hi dear Mizzy!

You can see now the catch:!Oncotype scores 36, otherwise favorauble histology, if we look at classical prognostic factors, except grade 3. Here we have a case, that is the reason why I would like to have everyone"s oncotype scores first, then I would look at classical prognostic factors. It is also true that your tumour type is luminal B because of grade 3 histology and PR - tumour. Luminal B tumours have worse survival than luminal A, becasue they are more proliferative. BUT as you have already said, it is very important to be aggressive with your hormone therapy as possible. I would do Femara for 5 years, then for another 2 years AROMASIN. And please, think positive!!!!!!!!!!!!!!111Our thoughts and wishes are materia. Do not bother yourself what you do NOT WANT TO DO, TO HAVE AND SO ON (YOU DO NOT WANT CANCER TO COME BACK), SO FOCUS ON positive thinking and good wishes, will you;)it really helps. You have to be treated psichologically as well, not  only phisically.

I hope you are well:)Kind regards from Slovenia!

nevaeh

When I asked my onc what my grade was, she replied that ILC is not graded.  When I asked her if my tumor was classical or pleumera (sp?), she checked the path report and could not tell me.

The Path report does not say what grade or type--guess my lab didn't do this.  Any way I can find out?

My OncotypeDX score was 21.  Tumor 1.5, node negative.  BRCA - despite strong family history.  Onc did not recommend chemo.  Had lumpdectomy with clear margins (residual LCIS); Plan now to do radiation and 5 years Arimidex.

Getting second onc opinion tomorrow.  Really worried I am taking right course.  Any comments (Slovenia - you seem to be up on this stuff--what's your take)

Thanks so much for any and all feedback

israel

  Hello matic 22

 

 my question: is micrometastasis in sln <0.5mm is like macrometastasise.

Is it node involvement or mach better

I made another axillaries surgery ,12 clean node

  Size tumor  2cm

 

 

 

i have ki-67 data (less then 5%)

hr -  score 0 (0-3)

I didn't get grade data.

estrogen>75%, progesterone>75%.

tumor 2cm ILC classical Varian.

matic22

Hi israel!

Yes, it means node involvement, but really very limited-it is not macrometastasis, but micrometastasis.Macrometastasis  in lymph node means it is more than 2 mm in diameter, everything that is smaller than 2 mm is MICROmetastasis.As I have already told you,do not bother yourself with node involvement because it has nothing to do with the prognosis in your case.Your tumour biology is very good, so hang in there:)Bye!

I would do the oncotype DX in your case as well!

ravdeb

With micrometastasis in nodes, they usually don't do anything but see if the chemo and/or hormone drugs will get rid of it.

With such a low Ki-67, it appears to me that it's a low grade tumor and that would be good. But ask your doctor.

I agree...with the 2 cm tumor you are borderline between stage one and stage two (me too) and you have the positive er so do ask for the oncotype test.

Good luck.

Mizsissy

Hello Matic,

Thanx so much for looking over my data and offering encouragement.  I am just wondering how to square this new information we're getting about being ER+ being more of a chronic disease, i.e., a more strongly recurrent disease, with information I have just heard from Dr. David Hymans at the Breast Cancer Audio Update site.

According to Dr. Hymans, women with high risk oncotype DX scores do not benefit as much from hormone therapy as women with lower risk.  And, now we are hearing that some of the chemotherapies are ineffective for many women, in particular, Adriamycin and Taxol.  I personally decided not to do Adriamycin because I was concerned about the effects on the heart, and took Taxotere with Cytoxan instead.  I am beginning to wonder if there are ANY therapies that are effective for women in the high risk category.

Perhaps I should have a double mastectomy...or would that be irrelevant?

I have a little family history for BC...a maternal aunt, and a maternal great grandmother who died of BC (my mom didn't tell me until after treatment was over!) 

Mizzy 

shrink

I have written this elsewhere but I am ER+, PR- and HER2-.  I have had 4 rounds of A/C three weeks apart and 3 of 4 Taxol infusions, also 3 weeks apart.  My 6 cm tumor has shrunk to where the onc. cannot feel it.  So, it worked for me, very well. I'm Stage III, nuclear grade 3, so I consider myself high risk.  I find it alarming to hear that I may have wasted my time with Taxol, Adriamycin and Cytoxin when, in fact, that's not the case.

I would also like to know more about this study - ie. how many women participated for how long and what were the inclusion criteria.  If anyone can tell me, I'd appreciate it.  Thanks.

Mizsissy

"SO women with both positive ER and PR receptors had much better survival than did have those with ER positive and PR negative."l

I am wondering if scientists really understand the mechanics of cell metabolism that prevents tumors from growing when women are on anti-hormonal therapy.  Tamoxifen is supposed to be a "weak" estrogen that fools the cancer cells, while the AIs are supposed to actually eliminate the estrogen in the body. 

Were the women in this study taking Tamoxifen or the AIs?  I've heard that tamoxifen can have a boomerang effect if you take it too long...that is, that the cancer cells eventually learn how to use Tamo like a real estrogen.  

I am wondering if Tamoxifen might really be affecting the PR receptors and not the ER receptors, and if so, can we generalize the same results for women taking AIs?

Mizzy 

nosurrender

Hi IDC girls,

I think there may be a little bit of a difference in study results, tx and prognosis in your cases because as Matic has so wonderfully explained to us our Lobular is a different kind of cancer completely.

Matic, I hope you jump in and maybe correct me if I am wrong!

But I have been lead to believe that my ILC is nothing at all like my IDC was.

g 

israel

HELLO RAVDEB, HELLO MATIC22

My oncology told me that very low ki-67,

high receptors, hr =0

Is low score on the oncotype dx test.

What do you thinking about this???

ravdeb

I don't know the oncotype scores so you'll need to see your doctor.

I sent you a private message...

israel

hello ravdeb

i send you a massage

bye

ravdeb

I got it israel!

Anonymous

Deleted by Mizzy

matic22

Hi Mizsissy!

Well, I have to say that there are actually chemo regimens that are good for ER+++ tumours as well, for example CMF chemo regimen, but of course if there is massive lymph node involvement Epirubicin or Adriamicin shoud be considered into the chemo schedule. Because you have to know that however the tumour is favourable, you have to give chemo to kill the rest of the cells that are through the body, if cancer is invasive.Kind regards!:)=

matic22

Dear nevaeh!

If you would like to know your grade and mitotic count of your tumour, you just need to tell your doctor to do so.I do not understand the doctor did not tell the pathologistto do it because grade is important of ILC as well.It is especially important to know whether it is grade I or II, or on the other hand GRADE III, that is less favourable.

I hope this helps:)BYE

israel

hello metic22

a lot of time you are not getting grade in ILC

you can get  ki-67 instead

israel

riverinerabbit

Hi, your comments are educational, thanks. I was dx with stage 1 low grade idc 8 years ago pr and er+ Her2-.No chemo first 3 years. I've had bone mets for 3 years. Been on tamox. arimadex, femara, all worked and 3 chemos. cef. taxotere now cef again. Faslodex was the last hormone drug and this did not work, hence the bone met becoming active again.



My confusion is this: My Onco, who' s one of the most experienced and well respected, thinks my pathology reports have been wrong all along and my disease shows classic pathway and development of ILC. She is convinced....She tells me this disease will follow the 'linings' route and not go into my organs,until perhaps the very end.



I would appreciate any help

nash

River--is there any way to biopsy your bone mets? The only thing I can think to suggest is that if they are indeed ILC, then the onc should probably do an abdominal u/s in addition to your scans. Matic says that's a good imaging technique for ILC mets.

What's interesting about your case, in addition to the IDC/ILC confusion, is that you had a very good prognosis from the start, with stage 1, low grade, ER/PR + HER2 -, yet you're Stage IV now. I had an oncologist tell me that she's had patients who she thought would do poorly do well, and ones she thought would never progress, get mets. It just goes to show how little they really know about the disease and how unpredicatable it is.

  

matic22

Hello riverinerabbit!

Firstly I have to say I feel sorry for you because of mets, secondly I also have to say that bone mets are treatable and they can be only there for a very long time, but however it is chronic disease not curable if there are bone mets.

So, my understanding is, you did not get chemo at the time of diagnosis, can you please tell me, how were you treated?Please, I would appreciate it!

And what was your age at diagnosis, this is very important!

Well, I would not say that path report is wrong, I mean why would be so, it can be, of course, but I think ductal carcinoma can also be so alike. BUT!!!!!IT IS ALSO TRUE that grade I ductal carcinoma behaves like classical lobular carcinoma, they have the same pathways, maybe your oncologist said that because usually ILC of classical, when it metastasize, it does not spread so quickly to other organs but stay to the bones, but I have to add here there is no rule to the pathogenesis of bone metastases. Noone!!!can predict when and where the metastases will appear, if ever. Do you know what I mean?I HAVE TO SAY I am surprised a little that you have developed metastatic disease but as your oncologist told you: I also have seen many patients with favourable disease that developed metastatic disease and on the other hand very unfavourable prognostic factors but patients went well for a long time, but I also have to say this is not very common, it is usually like the prognostic factors go.

I would appreciate your answers in advance and please, hang in there, you can try exemestan as well, for instance. You can ask your oncologist!

Kind regards!