Pleomorphic ILC

snicklefritz

Wow!  I am loving Dotties and Sue's posts here.  They both show that chemo does work on lobular tumors AND we ladies are surviving for many years post disease.

FABULOUS! 

Galsal

now we know that the type I have is this Pleomorphic ILC.

SuzieQToo

I also have Invasive lobular carcinoma, pleomorphic type, histologic SBR grade III/III (nuclear grade 3/3), tubule score 3/3, mitotic score 3/3).  The size of the tumor was 3.2x3.2x2.8 cm stage pT2 N0.  ER+ and PR+, HER-2-

I am doing 4 rounds of TC Chemo (3 weeks apart) then 3-5 weeks of radiation and then hormone pills for 5 years.  Still trying to figure out my prognosis.

Is grade 3 as bad as Stage 4 cancer?

Anonymous

no, grade and stage are 2 completely different things. I think if you go to the home page, you may be able to click on "stage" and "grade" where it will explain what each means. (I'm sure it will do it more justice than I could!)

anne 

DanaLu

SuzieQToo. I agree with awb, that sight is excellent. Haven't been on this sight for some time. Heading on to my fifth year in Nov. 2012. Had stage 3 with all lymph nodes being positive. Feel great except for the neuropathy due to the chemo.  Lost 60 lbs since stopping chemo. No sign of any recurrence. 

Anonymous

Okay, ladies, one more thing to terrify me...I didn't know there was a variance in ILC, which I have. My path rpt says grade I, stage II 2.1 c. with lymph node involvement--about half of the 11 sampled. I freaked out because when my surgeon showed us the path rpt right after my lumpectomy he said in his very scary intimidating doctor's voice "It's AGGRESSIVE."  My hubby and I were confused when we began to research because Grade I st. II isn't called "aggressive" by Susan Love and others...and lymph node involvement means it's there, of course, but not growing very quickly according to the path. We had the path checked out by MD Anderson too.

I read about this particular type PILC and immediately began to sweat...I looked at my path and in about 3 diff places it says dx: ILC, but in only one sentence buried in the path rpt it said "mildly pleomorphic". I also have multi-focal ILCIS.  I'm going to have a bmx and have gotten AC DD and will finish with Taxol x 12 in 5 weeks, then on to rads 6.5 weeks. BMX/maybe recon to follow after skin recovers.

My lumpectomy was done first, end of Sept 11--close but clear margins. I'm ER/PR + HER2 neg.  I'll start on Tamoxifen as soon as chemo is done, too.

I feel now after reading about "rarity", "aggressive", etc I need to be writing my will instead of writing this. Please help, but  I really only need some reassurance. Yes, I know the lymph node thing is terrifying so you don't have to remind me of it. But do I have PILC? And doesn't stage and grade matter, too? What do you think? Sweating....

Thank you!

C

SuzieQToo

claireinaz.  My doctor said that mine is agressive too and I guess what he was trying to tell me when I asked what stage it was is that the stage didn't matter in my case because the cancer was agressive. I'm still trying to figure out what it all means. Yours sounds similar to mine except that my nodes were clear of cancer. I think you shouldn't panic too much before getting all the information that you need.  That's what I'm telling myself. I see my oncologist next Monday before my 2nd round of chemo on Tuesday. I'll be asking him all kinds of questions and I'll post here his answers. 

SuzieQToo

Thank you very much for your replies awb and danalu. I can't seem to find the location of "stage" and "grade" that you are referring to.  When you say "homepage" do you mean the homepage for the forum?

SuzieQToo

I found where to read up on the difference between stage and grade but I guess my real question is this.  Is a grade 3 cancer just as bad as Stage 4 cancer?

SuzieQToo

DanaLu. Great to hear how well you are doing.  Does Chemo make you gain weight?  What kind of neuropathy do you have? That's nerve damage right? What kind of Chemo did you have? I'm having  4 round of TC 3 weeks apart with a Neulasta injection after each round. It's day 16 and I still haven't lost my hair.  My doctor told me that I would lose it for sure so I'm still waiting.  I haven't had any major side effects from the chemo which is making me wonder if it's really working. 

MandaLynn

Claire-

Just because your path report states "mildly pleomorphic" doesn't mean you have pleomorphic ILC, it's a descriptive term that is used to determine how "differentiated" the cancer cells are vs normal cells. It is used in determining the grade of the cancer not the histological type.



Please don't panic, your cancer is hormone sensitive so you have many options for treatment. There are several women in the stage III forum with PILC who are years out and doing great (if that's what you have, but I don't think so). You have a grade I tumor and I've never heard those described as aggressive. In fact, it usually means it's been growing in there for years, Mine was grade 2 and I was told it grew over 5-8 years.



Susie--- You are confusing grade and stage - they refer to different things. Grade, in general, refers to the "aggressiveness" of the tumor (actually several criteria are combined to create the grade). You can have a grade 3 tumor at any stage. Stage 1 to 3 are considered local, regional or locally advanced tumors and have the possibility of a cure (at any grade). Stage 4 is not considered curable, but many woman can live many years at sage 4 --almost treating it as a chronic condition.



You can't compare a grade 3 tumor with a stage 4. Your info says you are stage II, so that is better than stage 4 no matter what the grade is because it means that your cancer has not metasticized or spread to other parts of your body (bones, liver etc). So, grade 3 is aggressive, but they caught yours before it had progressed so that means they are treating you aggressively.



Exit out of the discussion forum (where you are now) and go to the breastcancer.org main screen and look fr the part where it describes terms, it's so helpful to understand things.



Hope y'all can find some calmness in all this craziness. I'm 3 1/2 years out and doing great, you will too! The beginning is so hard, but it'll start to make sense soon.



Amanda

MandaLynn

Claire-

Just because your path report states "mildly pleomorphic" doesn't mean you have pleomorphic ILC, it's a descriptive term that is used to determine how "differentiated" the cancer cells are vs normal cells. It is used in determining the grade of the cancer not the histological type.



Please don't panic, your cancer is hormone sensitive so you have many options for treatment. There are several women in the stage III forum with PILC who are years out and doing great (if that's what you have, but I don't think so). You have a grade I tumor and I've never heard those described as aggressive. In fact, it usually means it's been growing in there for years, Mine was grade 2 and I was told it grew over 5-8 years.



Susie--- You are confusing grade and stage - they refer to different things. Grade, in general, refers to the "aggressiveness" of the tumor (actually several criteria are combined to create the grade). You can have a grade 3 tumor at any stage. Stage 1 to 3 are considered local, regional or locally advanced tumors and have the possibility of a cure (at any grade). Stage 4 is not considered curable, but many woman can live many years at sage 4 --almost treating it as a chronic condition.



You can't compare a grade 3 tumor with a stage 4. Your info says you are stage II, so that is better than stage 4 no matter what the grade is because it means that your cancer has not metasticized or spread to other parts of your body (bones, liver etc). So, grade 3 is aggressive, but they caught yours before it had progressed so that means they are treating you aggressively.



Exit out of the discussion forum (where you are now) and go to the breastcancer.org main screen and look fr the part where it describes terms, it's so helpful to understand things.



Hope y'all can find some calmness in all this craziness. I'm 3 1/2 years out and doing great, you will too! The beginning is so hard, but it'll start to make sense soon.



Amanda

hmh23

Amanda;  I couldn't have said it better.  I too am PILC and Grade 1 Stage 3A and my oncologist is extremely confident that I have a very long time left on this earth.

Today I am celebrating my 2 year cancerversary!!!!  I don't know if I could have done this well without all of the support I received on these boards.  Thank you to everyone who posts and who responds.  Heather

SuzieQToo

Thank you very much MandaLynn for your response. 

 I had to get my hair chopped off yesterday. It was very upsetting. But I have a really nice wig and I guess I'll get used to it.

barbiecorn

I have had my BMX on Feb. 1st - drains will come out on Weds.  So I am a new to this nightmare which started right after xmas.  Anyway - My diagnosis was invasive pleomorphiclobular carcinoma 2.2 - grad 2- stage 2 - HER-2 - amplified ratio 2.6 - ER- 97% - PR - 0% - Don't know what course of treatment I will have...want to get some second and third opinions after I meet with the oncologist.  Anyway, my daughter is getting married this spring and I have decided not to do any treatment until after her wedding.  I do not want to feel sick, etc. with treatment during this time.  I am trully scared about all of this. I can use a shoulder to cry on.  Thank you!!  God Bless Us All!!!!

toomuch

Barbiecom - Did your BS send your tumor for an oncotype test? Since your tumor was ER + and Her2 -, it can your MO and you, come up with your treatment plan. If it is a low score, it may be that anit-hormonal medicines are the best way to treat your cancer and you should be able to take them prior to your daughter's wedding. Many women have relatively small or no side effects from these drugs. I agree with getting several opinions before deciding on your treatment course. In the meantime, hope you enjoy this time with your daughter.

matic22

Hello dear Barbiecorn!

I would just like to add my opinion regarding your treatment plan.

I think genomic profile Oncotype dx would not be of any help in your situtation because I am 90% sure it would be high risk (because you have amplified HER-2 gene and the HER2 gene is a part of Oncotype dx recurrence scores). This type of cancer needs a good chemotherapy with both, anthracyclines and taxanes and concomitantly with taxanes also trastuzumab for a 1 year period.

You need to know this HER-2 positive cancer is an agressive one, however based on all other prognostic parameters with all chemo, trastuzumab and hormonal therapy there is a big chance for curing but not without these treatments.

please go into treatment with all weapons, it will be a very beneficial for you.

If you go for genomic profiles, choose rather Mammaprint because it has 70 genes (HER-2 not included) and it actually reveals approximately 10% of HER-2 positive cancers that are indolent indeed and do not need chemo. But if I were you in case your mammaprint would be low risk(??) I would go with hormonal and trastuzumab, in any other cases (also in case you do not do any genomic profile of your tumor) I would opt chemo, trastuzumab and hormonal therapy.

It is not because of pleomorphic subtype but because of biologic characteristics of this tumour and I doubt it would be classified as low risk.

As I have said with all treatments (anthracyclines, taxanes, trastuzumab, hormonal therapy) your changes for curing this disease are high, but it is not true for the other option-if not choosing all these treatment arms.

We do know that taxanes are beneficial inHER-2 positive patients regardless of ER,PR status and this is a typical HER-2 positive cancer where there are no PR expressed.

There are a lot of schemes available: AC or EC4X + 12 Taxol or FEC-100 3X + Doce 3x or 4AC dose dense + 12 Taxol.

On the other hand only taxanes plus trastuzumab I think they would not have been enogh because HER-2 positive patients also respond very well to anhtracyclines (especially if TOPO alfa 2 positive by FISH) and high MIB(cuttoff 14%).

Very best regards and I hope we have given you some support.:)

P.S.: I think the wedding of your daughter is in this case secondarilly, not primary thing. You need to start treatment at least 8 weeks post operation but better as soon as possible to kill those cells that are travelling in the blood.

Matic

Gitane

Hi Matic,

It's always good to hear from you and benefit from your special interest in ILC.  Thank you for posting.  I think about all the times you've helped and am so grateful.  G.     

IllinoisNancy

Dear Matic,

Thanks so much for checking in on us!  I value your opinion and read your posts numerous times to obtain information. 

Warm regards,

Nancy

matic22

Hello dear Gitane!

THANK YOU so much for your kind words and support.It really means a lot to me of you all lobular ladies;))

I have found some good article (study was finished last year in November I think) where they compared ILC not treated with chemotherapy and ILC treated with chemotherapy. I will try to give you all to have it ...And: those who were treated with chemo actually had better outcome than those who did not.So, not for all lobulars , hormonal is enough-I do not think so either.

I will try to find in.It was in my jounal Annals of Oncology which I get it monthly.

Best regards also to you dear NancyIllinois.:I hope you are doing well..

I have found one article about lowrisk oncotype scres and recurrences-in that group that had lowrisk tumors according to oncotype Dx (Genominc Health) MIB-1 WAS the most reliable predictor for relapse...so if the tumor has high MIB-1 (more than 14%), it is more chance that overall lowrisk tumor will relapse, others not-I will also try to find this one too:;)

Kind regards to all:;)It is quite late night, so I have to go to sleeping:)

Matic

Galsal

those sound like soome good articles Matic. 

hmh23

I am currently thinking of working on helping get the word out on Breast cancers that are not detected by mamograms as is my case with ILC.  I thought this would be a great place to start.  So, if you have been diagnosed with ILC, would you kindly let me know how it was detected. 

I personally had 3 mamograms and 3 sonograms that didn't find it and only with the persistence of my radiologist, did I have an MRI which diagnosed me with Stage 3a ILC.  Would love to hear your diagnosis story. 

Thx so much, Heather

mary625

I'd love to be part of this effort. I found my tumor because of pain and soreness in the area. This was 8 months after a benign mammogram.

toomuch

hmh23 - I found my PILC on breast self exam 9 months after a normal diagnostic mammogram and sonogram. It is likely that it was missed on mammograms and ultrasounds in previous years too. I'd love to be part of an effort to educate women that mammograms don't pick up all BC.

cj81842

You can count me in.  After having IDC on left breast with mastectomy five years ago, I have been very faithful with Oncologist visits, mammograms, ultrasounds and MRI's but still ended up with ILC in right breast this past August - only five years from first bc.  I have very dense breasts but I feel this shouldn't have happened since my tumor was 5.5 cm and was grade 1 when finally found so why wasn't it found earlier. Mine was not detected in the mammogram or ultrasound but did show something in breast MRI and after having core biopsies, I was diagnosed with bc once again only this time the cancer was at my chest wall and had already invaded my pectoral muscle. I truly believe more density was seen (at least, what they thought to be more density) during the past five years and maybe if they had done a biopsy just to make sure, I would have had a better prognosis or at the least, the tumor would have been smaller. Who knows...

SAMayoFL

I would like to hop on the bandwagon too!  When I found my very large lump I didn't go to the doctor because I had a clear mammogram 3 months before!!  I tell everyone who will listen that all breast cancers are NOT detected on a mammo.

Susan

Galsal

this would be great to review, Matic!  i'm curious to know if it's for all stages for ILC or what specifics about it.

"I have found some good article (study was finished last year in November I think) where they compared ILC not treated with chemotherapy and ILC treated with chemotherapy. I will try to give you all to have it ...And: those who were treated with chemo actually had better outcome than those who did not.So, not for all lobulars , hormonal is enough-I do not think so either."

Sally

Nkb

I read that if you have a high metaplastic spindle cell count your prognosis was worse with pleomorphic ILC. Where do you find out your metaplastic spindle count on the path report?

Does having a low mitotic count (1) make it less aggressive? Does tubular count count more in prognosis?

Gitane

Hi Nkb,  A lower mitotic count means it grows slower (fewer cells are dividing under the microscope).  All lobular BC has a tubular formation score of 3 because of the morphology (shape) of lobular breast cancer.  (This is unlike ductal BC that could be 1, 2, or 3 for tubular formation.) I believe metaplastic spindle cell count applies to metaplastic BC of the spindle cell type, but I really don't know much about it.  I don't think it applies to lobular, or pleomorphic lobular necessarily.  There was nothing about this on any of my pathology reports.

Nkb

Gitane- this is a quote from an article on the internet and i am wondering what it means and can i tell from the path report about the metaplastic spindle cell component?



"Overall statistics tend to show a five year disease free survival rate of about 40%, although about 40% of women with pleomorphic breast cancer may succumb to the disease in 2-3 years. However, the absence of a significant spindle-cell component has been demontrated to have a positive effect on survival, as well as a tumor size of less than 5cm at the time of diagnosis. It may be estimated that patients with pleomorphic carcinoma of the breast but without a significant metaplastic spindle-cell component will survive the disease about 90% of the time."