ILC and chemo

bean4865

ILC and chemo

bean4865

I am 42 years old and recently diagnosed with invasive lobular. I had MRI done which shows 8 cm mass. Mastectomy is December 13. Not sure about bilateral or not. Going crazy trying to decide. My ob/gyn doesn't think it is necessary because no malignancy showed in other breast. Will see oncologist and will decide. My question is has anyone my age 42 ever had ILC 8 cm grade 1 (with no apparent lymph node involvement according to MRI) not have to have chemo. This scares me. I have read so many horror stories of chemo. My ex sister in law had it and said it wasn't that bad.

shrink

Kathleen: - I could be mistaken but I thought that all tumors over 2 cm were treated with chemo first in order to shrink them to an operable size.  However, each person is different.  I had 4 AC and 4T with minimal side effects. My tumor is grade 3, enlarged nodes and I'm stage IIIb.  Now I'm scheduled for surgery on Dec.3.  Lots of luck on this tough, long road.

Lynn12

Hi Kathleen,

I was 45 when diagnosed with a 7.5cm ILC tumor, multi-focal.  My sentinal node was negative.  Have you seen an Oncologist yet? I'm guessing not...I didn't see mine until after my surgery.  Anyway, I'm pretty sure you will need chemo. Your onc will go over the numbers with you on recurrence and survival rates.  For me, if I did nothing, I would have a 34% chance of recurrence, that's too high, so it was a no brainer to do the chemo.  I don't think it was ever a question in my Onc's mind either. 

Chemo is doable.  I had 6 treatments of TC.  It sure wasn't a walk in the park, but I got through and know that I hit this beast with the big guns.  The anti-nausea drugs are amazing these days.

Making the decision on bilateral is tough.  At the time, they thought my tumor was about 1cm, so my surgeon would not even consider a bilateral.  It's been almost a year since my mastectomy and the thing I hate the most of having one breast.  In 3 weeks, I'm getting a prophalactic mastectomy on my left breast and bilateral DIEP reconstruction.  But that's me, everyone is different.  There are several threads on the this board that discuss unilateral vs. bilateral mastecomy.

Best of luck to you, please feel free to PM me if you want...looks like our diagnosis are quite similar.

conniehar

Kathleen -  I think I responded to you on another thread too.  I was dx's at 39 and had a large tumor.  I was told that anything over 5 cm definitely needs chemo and radiation.  I was scared to death of chemo also, but I made it through.  It wasn't that bad.  I started radiation today.

I asked my surgeon about a bilateral and he did not want to do it.  Because my tumor was so large he didn't want to risk having my good breast get infected and delay chemo.  He said I could come back anytime to have the other one removed.  I'm still deciding.

Best of luck to you. 

trigeek

Kathleen,

First of all Stop reading the horror stories and do not talk to people who tell you about them  Only read facts, statistics.

I am 45 had 2.5 cm ILC tumor grade 2, with 2/6 Sentinel nodes positive.

Before the surgery I opted for bilateral mastectomy ( I was given the option of lumptectomy) it turned out that the breast having the tumor also had other multifocal ILC's brewing up that did not show up in MRI or Mammo, so that was a good call.

As for the other breast... I am sorry but it was collateral damage. However I felt that I would surely have a heart attack if I had to go have future mammograms those would be just too stressful for me.

Plus I was worried about reconstruction and the problems that I heard about matching the mastectomy breast to the other one, and the reconstructed breast staying perky as years passed but the natural one sagging. ( I intend to be around till I am 90 ! )

Bilateral Masc -  Very personal choice.

Chemo.. I went  with what the doctors told me to do  I did not want to mess with that decision and have it on my conscience.

Good luck !

Make a decision and never look back !

Msklapkin

Bean,

I am glad you are going to an oncologist.  While we all have special relations with our ob/gyn and trust them, they really do not know about BC like the oncologists.

Oncs, particularly those that specialize in BC have the best info.

I am BRCA2+ so double mast was what I chose.  I also felt after having BC once, I did not want to get that phone call again and would do all I could to avoid it.

I did 4 months dose dense chemo and it was fine-definitely doable and I know I took an aggressive approach.

good luck

susan

mkl48

I would find someone who knows lobular. The recent studies on Taxol make one wonder about its use especially since chemo is not as effective in reducing   lobuar  tumors adjuvantly though that does not seem to be as predictive of survival. Hormones are the treatment that MDA says is most important. Fec is used there for many lobular. New ideas about node negative- low miotic , grade 1 may be very  important.Dr. Crhistifanelli is the expert. Google him.Beth

SLH

My ILC was miraculously found at 1 cm.  But I chose a bilateral for many reasons:
1) Lobular cancer tends to swing to the other side
2) A lumpy "good" breast that I'd had 3 needle biopsies on already
3) By having my cancer-free breast removed, I didn't have to biopsy lymph nodes, and therefore I have an arm for I.V.s and blood pressure
4) I wasn't sure that I would be so lucky if it came back
5) Less breast tissue=less estrogen=less cancer reoccurance (hopefully)

I didn't want to worry every time I felt a lump.  In the biopsy of my good breast, they didn't find cancer, but they found 5 small benign solid lumps that would have been future fears.

ValerieF

Hi Kathleen,

I was dx with ILC at age 39.  The MRI/CT/mammogram estimated the tumor size to be anywhere from 6 to 10 cm, but it turned out to be "only" 4.5 cm.  By this date, you have already had your surgery, so you'll know about tumor size and nodes.

Anyway, I had the 4.5 cm tumor with 3+ nodes, but went into my first oncologist visit armed with Dr. Cristofanelli's study and a couple of others.  My onc was quick to say that she thought that it was reasonable for me to have hormonal therapy rather than chemo.  So, I started with ovarian suppression + tamoxifen and also did rads.  I had my ovaries removed in August.  So far, so good.

carstell

 I had aleft mastectomy for ilc on Friday 12/21. Initially all tests showed 1-1.5cm and 1-8mm tumor. I had a MRI mammo amd ultrasounds. Ijust got a call from my surgeon. It was actually 1 big tumor 4x3x3cm. They also saw some dcis.Funny they couldn't see that with all those tests.Nodes were negative!!!I am 40 years old.I will make an appt. with an oncologist on Friday. I was told tumors greater than 2cm usually get chemo.