ILC - The Odd One Out?

MsPharaoh, one more (yes, I am a bit obsessive, in case you haven't noticed).

This is a recent study and concludes, again, that CPR may be lower in lobular, and that means patients with lobular cancer may not get short-term benefit (such as clean margins or breast-conserving surgery):

"However, it would be an “oversimplification” to conclude that ILC simply does not respond to neoadjuvant chemotherapy, they emphasized. While most patients with ILC “are unlikely to derive substantial short-term clinical benefit” from neoadjuvant chemotherapy, they may derive modest long-term survival benefits, similar to those seen in ER-positive IDCs, they explained." Chemo in ILC

MsPharaoh, welcome! and we agree. I found more studies that basically reach similar conclusions. From the dates of the studies, it does seem to be something quite a few people are looking into. 

The study I just read the abstract of noted that clinical response was better in ILC, although CPR was worse (compared to ductal). It also noted that the low rate of CPR appeared to be clinically unimportant and that more ILC than IDC patients were still alive and healthy after 5 years.

This fits my own case, since I had a very good clinical response (meaning after 2 chemos the tumor had halved, and after 3 we could no longer palpate the tumor and I felt so MUCH better, even with the stupid chemo SEs), but there was still live cancer after the operation. So no CPR for me either.

Gemini, yes, I had neo-adjuvant, but I am not the "swiss cheese" poster, although I also remember that post. When we started chemo my tumor was about 5-6 CMs by 3.5 CMs. In the path report, there was 2mm (0.2CM) by 12mm (1.2CM) left, about from golfball size to a sliver of fingernail, so a very significant reduction.

From the studies I just posted above, and from others I have read, there is nothing to indicate that chemo is less effective in ILC than in IDC, in terms of recurrence-free survival and overall survival. The only real differences seems to be in the rate of complete response, which in any case is rare.

Yes, looking at it now, I realize it really was pretty durned significant. The thing that shocked me most was the difference in how I felt. I had been having symptoms for years, except they were all sort of vague and the kind docs chalk up to addled female brains or something. One female doc suggested depression, which is the polite version of "all in your head, dear" (although depression is also a cancer symptom). By chemo 3, with the tumor virtually gone, I started springing back to life. Haven't stopped since

For about 5+ year prior to finding the tumor (it was only palpable right before DX), I had mild nausea after eating in the AM, fatigue, weight gain (slow, but steady) and general malaise. I thought I had either thyroid disease or the beginning of diabetes. Got checked out several times, and they found nothing. Oddest thing is that these symptoms started on and off not long after my kid was born (she is 21). They only became persistent and bothersome later, but I do wonder how long I had that thing lurking, just based on the symptoms.

Once the tumor shrank, I finally started feeling good the way I remembered feeling long, long before.

Karen, definitely worth mentioning. My onc was quite insistent on finding out how I was feeling and how I was tolerating the SEs of femara as well as after effects of treatment. On balance, I feel better than I have felt in at least 15 years or so and compared to how I felt the 5 years prior to DX I feel downright fantastic (this is factoring in all the SEs and annoyances, physical and psychological). It is a bit freaky actually.

Georgie, it is early days still for you. Don't give up. Just try to do a little, tiny bit more each day. The thing that helped me the most was exercise. During treatment I walked, nothing else, and a very slow walk too sometimes. 

I had my last chemo in December (2011), then finished rads in late February (2012) and had a hyster in late March, after which I started femara. At that point I looked like death warmed over, weighed 115 pounds and could barely walk up a flight of stairs (I had bad inflammation from the chemo and it lingered). I still felt like myself finally, if that makes sense, after really not feeling "normal" for a very long time. I started going to the gym 3X a week when I started the femara. I still go 3X a week, but I can do a lot more and a lot more easily than back then.

I also gained weight the ten years prior to diagnosis. I thought is was hormonal. Interestingly enough, cancer breast, the left, was slightly bigger than the right after childbirth and nursing.  It also kept getting bigger the last few years.

Hi, just found this thread, quite a coincidence, as I just had my last AC today. Still have four taxoteres to go though. And it's neo-adjuvant. Dx at 55yrs and 8 months. 8cm x 6cm mass has shrunk to 6cm x 3.5cm with four AC infusions. Do smoke, very occasional wine drinker, took birth control for only about five years between 18-23 years old. First child at 18, second at 24, nursed that one for 9 months. Periods started at 11, scary regular, no cramps, bloating, or PMS. Ended at about 50. Just stopped, no menopause issues at all. A mammogram and ultrasound 18 months before DX missed it and we all know it WAS there. Mother died of BC but was DX at 89 so it was most likely an age thing. BRCA negative, thank all the stars in heaven. ER+, PR+, HER- No funny symptoms at all. Just one day found this tangerine size thing there, can't call ILC a tumor, so I call it Big Ugly. Mom did not take DES.  Not feeling so hot after the AC today, so I can't remember what else you guys were listing. I'll re-read later.

Hello all, I've been reading this thread with interest.

My story:

I found a lump just a couple of weeks prior to my regular mammogram.  It showed the lump clearly as well as lobular type cells in a different part of the breast. U/S showed both clearly as well.  I'd always had my mammograms every two years from the age of 40.  Core needle biopsies of both areas showed IDC as well as ILC in two separate parts of the breast.  So I hit the jackpot, having two separate primaries.  Apparently not all that common, but not rare.

The IDC was 2cm and the ILC was almost 1cm, and as the IDC was grade 3 and HER2+ was the primary tumour that dictated treatment.

I had my first period at 12, and always had very heavy periods and as I got older they were also very painful.  Endometriosis was dx after trying to fall pregnant. Was on Clomid for around a year (I think!).  No success in falling pregnant and due to the severity of the endo had a hx when I was 28 without ever falling pregnant.

I'm now just over three years from dx, but around seven months ago started to get abdominal pain in the lower right. Have had U/S, CT scans that haven't shown any problems, apart from a 4mm lesion on my liver. Still undergoing testing to try to get to the bottom of the pain. Of course I'm worried that the ILC has come back to the abdominal area, but also wondering if it may be a "grumbling" appendix.  I'm having a colonoscopy next week (have had diarrhea for the past two months) and once that's done will see the onc in early March to see what his take on everything is.

I'm on Aromasin now and it's treating me fairly gently.  I did three rounds of FEC and was supposed to do three rounds of Taxotere, but reacted badly to that and ended up only doing two rounds.

In Australia FEC-D seems to be the standard of care for IDC and ILC.

So - I was lucky that the mammogram and U/S showed the ILC very clearly and it was very small and only grade 1. I'm hoping that this means that the pain I have at the moment isn't because the ILC has migrated, but a more mundane finding.

We'll also have to keep a close eye on the liver lesion in case it's more sinister.

Great thread!

Trish

I must be one of the "odd one out"......I actually was feeling pretty good...no real complaints when I was Dx....I went for my annual mammo and it was the first time that I was ever called back....Prior to Dx no real health concerns or issues other than some struggles with mood disorder but functioning well...working full time (yes job was stressful but what job isn't), married, 3 kids and a husband...life was good and I was looking forward to celebrating my big 50!!!  Of course with Dx 3 months before my b'day, life changed!!!  I am one week shy of 8 years from Dx and life has not been the same since then!!!

Momine,

Thanks for the support. It helps!!! I made myself walk a bit longer tonight even though it was cold. I always appreciate your research, information in this and other threads.

Kat....as I noted in my post above, I was living life well and no health concerns or complaints....I was fine till I got the call back from my mammo....I was healthy and only went to the doctor once or twice a year...took almost no meds....I was the rock!!!  I worked full time and had 2 kids at home and one in college....with my youngest only being in grade 2 at the time of Dx.  

Holeinone....No, I don't have a constant panic feeling...not sure I was panicked when first Dx but sure lots of anxiety, fear and tears!!!  I'm not the same person that I was when I first heard those dreaded words on 02/03/3006, but then again, I'm 8 years older as well.  I struggle with some late effects of chemo, like some chemo brain but then some people say its age.....who knows!!! depression is also an issue for me....But on the positive side, I work 3 days/week, cook, clean, grocery shop.....spend time with my mom and take care of her, married and still have 2 kids at home....walk every day at least 10k steps and hope to start running....I try to live life the best that I can.  Fear of recurrence...you bet that is in the back of my mind....I know that it can come back at any time!!! but it is not the first thing I think of when I wake up....I see my onc every 6 months with my next appt in March and I don't like going, because its a big reminder of what was and what can be!!!  I do get anxious around the appt....but I've quit seeing all the other docs (BS and PS...rad onc dismissed me when I was done rads and said that med onc would follow me and report to her)...I haven't been to my gyn in 3+ years or my pcp in over a year.....

I enjoy reading this thread...thanks everyone...

Greenarch, I hear you. The 5 years prior to DX were some of the busiest in my life, as well as challenging. My mom was going through ovarian cancer (she is well today, against all odds), my kid was going through HS, boys etc, I had enrolled in university to study Arabic (midlife crisis or something) and we had all kinds of work too. Just as kiddo had gone off to college and I had finished a big research paper, thinking it was time to breathe, I found the tumor.

I am with Karen - I was about as fit, healthy and energized as I had ever been just prior to Dx - we have had a pretty stressful 5years pre Dx. - due to a near marriage breakdown and new business venture - (all on track again now ) But I am still convinced that too much EtOH was the main reason for my ILC .....