How many had chemo with ILC?

mymountain

I'm sure this question has been posed before, but I am curious.  I am understanding that ILC is kind of a slow grower, and most are grade l or ll. Mine was a grade ll.  I did have the oncotype dx -my score 11,and since I did not participate in the TailorX trial, I didn't have chemo (would have been randomized anyway).  I was so relieved initially not to have the chemo, but a year later, I wonder if it would have given me some reassurance (at least mentally) from a second or recurrent bc. Seems like every few months, something pops up to worry about.  I know each ILC is different, but was curious how many did have chemo?

Thanks, MM

IllinoisNancy

Hi MM,

I did not have chemo for my ILC.  My oncotype score was 9 so my oncologist said it would be of no help at all.  I'm approaching my 3 year anniversary next month and so far so good.  We are similar in the fact that we are both er+ and pr-.  Was your er+ really high like mine?  I scored the highest you could for that one. I think we both made the right decision based on all the research that I have done in the past 3 years. 

Take care,

Nancy

nagem

I had chemo (and Herceptin), but my ILC was grade 3, hormone-negative, her2neu-positive and had invaded one lymph node. Not the usual lobular profile. But I'm four years out, and feeling fine.

Kleenex

I also had an oncotype of 11, and was not offered chemo. The oncologist said that the risks from the side effects would be greater than any potential benefits for me. Also, since my tumor was highly er & pr +, I was a good candidate for Tamoxifen, which is allegedly reducing my risk more than chemo would have.

I remain relieved to have avoided chemo, and feel like I am "doing enough" with the Tamoxifen.

Coleen

nash

I had chemo, but I was 38 at diagnosis, had an Oncotype of 18, and had a 2.7 cm pleomorphic ILC tumor, which I was told acts like a grade 3 IDC.

nash

MM, wanted to add that with an Oncotype of 11, hormone therapy is more effective than chemo on your tumor, like Kleenex's.

That's the whole deal with Oncotype--it measures how responsive your tumor is to hormone therapy. It's not that chemo is a better or more effective adjuvant therapy in general than hormone therapy--it's just more appropriate in specific settings. There are plenty of Stage IV women who are on Tamoxifen or an AI, and no chemo, and they have a good response.

So don't feel like you didn't do enough--you did what was appropriate for your situation.

amlg1

I am doing chemo now,many lymph nodes involved.also not the usual profile for ILC ,I am ER/PR-HER+.I have gone every year for mammo's,then this shows up,so mine was not slow growing.

Anonymous

I start chemo tomorrow.  I did sign up for the TAILORx trail, my oncotype is 24, and I was randomized to chemo.  Like Nash, my tumor as well as LCIS in both breasts is pleomorphic.  I am glad I got the chemo, so I won't have to wonder.  I have heard from many people that you should trust the oncotype.  At this point it seems to be the most advanced test for determining the benefit of chemo for node positive women.  I think with an 11 I would have been less enthusiastic to do chemo if I had been randomized to it.  I hope you are able to relax and not stress.  I think an 11 is a great score.  Take care.

Susan

Mazy1959

I had AC chemo x 6 dose dense for stage 2b ILC. Mine was fast growing. It had visibly grown in just one week (you could see my tumor just by looking at my breasts). The surgeon believed it to be about 2 cm when he first saw me but by the time the week had passed he guessed it had grown alot more and it ended up being 3.2 cm. I honestly think its the luck of the draw on who gets mets. I was on the unlucky end and I do have bone mets but I am stable and doing okay.

I read somewhere (maybe on this site) that ILC often does not respond to chemo as well as IDC. I do not regret having chemo. I am confident that I did everything possible.

May you never have mets and may you live your life like it's never coming back.

Hugs, Mazy

hrf

I had chemo for ILC -- it was already in 4 lymph nodes by the time it was detected. No oncotype testing was done. 100% ES+/80% PR+ so should respond well to Arimidex.....I hope.

TXBadboob

I had chemo for my ILC.  Mine was 2.9 cm and you could see it bulging visibly outside my breast like a small orange.  The tumor responded better than expected to the chemo.  I then had BMX, because ILC tends to be bilateral and I tested pos for BRCA2.  Glad I did, as I had IDC in the other breast, even AFTER chemo!  I never got the oncotype test, as they suspected I had a bad node, which it ended up I didn't.  I am now on Arimidex and Zometa IV and am cancer free so far.

  My onc explained that the ILC tumor is a lump that has bad cells integrated with fatty tissue, and an IDC tumor is a dense lump of mostly bad cells, so the chemo tends to shrink the IDC tumors more quickly than the ILC tumors.  Hope that makes sense.

Have a great day!

Deen

Hood1980

Deen,  Thanks for the excellent description of the different types of cancer tumors. 

cd1234

I had chemo for my ILC. 4 Rounds of AC, 12 rounds of Taxol and I took part in a study, so I recieved 8 doses of Avastin also. I had a bi-lateral, and getting ready to start Tamoxifin. I figured that I would do everything I possibly could to get rid of this disease.

fortunate1

I did not have chemo. My oncotype score was 20.5, and my Onc said no chemo was necessary, that Femara was where the benefit was for me. I was surprised- he was very insistent- I agreed.

mymountain

Wow, we are all over the board with differences in dx and treatment

.  Fortunate 1 I'm surprised your onc was insistent with 20.5.  We had decided that we would have the talk about chemo if i scored above 20. 

Nash ,I would have thought no chemo for an 18, but maybe because you had a grade 3?

Nancy, our stats are very similar, and am encouraged that you are coming up on three years!

MM

I guessI I  worry as much about a recurr as anyone, and hope that will diminish over time.  Remember the saying "Time heals all wounds"

nash

MM, the Oncotype of 18 was only part of the decision for the chemo. Yes, the grade 3 played a part in it, as did the size of the tumor, the fact that it was growing into the pectoralis muscle, my age at diagnosis, and the fact that my ER/PR expression was only moderate. I got four opinions, plus my case went to tumor board four times, and all docs said to do chemo.

delaine

Hi everyone

 Interesting reading here about the differences in our treatments.

I had bi-lat mastectomies on Aug. 6. Met my onc. yesterday and I will be getting chemo T/C X 4 - just waiting for appt. date but should be within the next two weeks. My tumour was 4cm - no nodes involved. No oncotype test was done; I don't think they do them in Canada but I could be wrong.

dreaming

I had ILC and D.C. I wanted the most aggressive treatment I could get, had a mastectomy ,chemo, for me it was the right decision, I respect what others chose, I am almost 16 years from diagnosis.

Also I never look back or question a choice I made, what is the point?  It is done.

I was Stage 1 .

nash

Wow, dreaming, congrats on 16 years out. That's great!

I agree about not questioning the choices we've made--it's done, and those choices were made with a lot of careful thought and consideration. Same goes for other's surgery and adjuvant treatment choices. There's no one size fits all answer with any of this.

fortunate1

Mymountain, Yes I was surprised at the no chemo recommendation too. I just looked up the charts he gave me from Adjuvant online. (My cancer folder, do you have one too?) For my stats, without any further therapy at all, 70.3 out of 100 would be alive without a relapse in 10 years (5.3 die of something else). Femara saves 12.4 more. Chemo added would save 1.3 more. I guess that and the oncotype made him pretty confident that chemo and it's possible side effects weren't for me. And me? Well I'm hoping they all know what they're doing.

KorynH

Another great resource like adjuvant online is NexCura 's outcome wizard - very thorough..where you can get results of all kinds of studies done to your specific case stats.  I had her2+++ so chemo was a must even though I had small ILC and IDC, + mastectomy .  With ILC I am told the bogger concern for my situation is developing bc in the opposite breast, which I do still have. ILC tends to show up in the other breast more often.

Gitane

Had chemo.  AC x 6 dose dense, 4 before surgery, 2 after. No question that I needed it since I had a lot of tumor in my breast.

azmnm

I also was dx w/ILC. I had chemo which included 4 treatments of A/C and 4 of Taxol. Before chemo I had an unsuccessful lumpectomy. After chemo I decided to have a bilateral mastectomy.Tough decision but I didn't want to go through it all over again if it returned in the other breast.My surgeon and onc. were aggressive with treatment and care. The chemo not only took care of the "seed-like cancer that was still in my breast after the lumpectomy, but was prophylactic in that if for any reason there were cells anywhere else, it took care of that also. It was er+. I am on femara for 5 years. That too has some side affects, but I can deal with them.