Has anyone not had a mastcetomy with Ivasive Lobular?

I had a complete mastectomy.  My mass was 12 x 8 cm.  Pretty big.  I'm lucky though; I trust my doctors and go with whatever they say. I figure they know more than me.  And the sooner I had that cr*p out of my body, the better.

Hi Annie,

I had a lumpectomy for ILC in May 2009.  The first opinion I got was that double mastectomy was my only option.  I got three more opinions that all said that lumpectomy was reasonable for me. 

My tumor was pretty small, and I think maybe that plus the fact that it was found by a screening mammo somehow made me feel like I didn't need to go the most drastic route.  The biopsy report also showed no lymph or vascular invasion and I had an MRI that was clear for anything other than the original tumor. 

I didn't have the experience like a lot of others seem to where they can tell something is wrong and none of the scans show it.  If I had, I think I probably would have felt a lot differently.  Since it was so out of the blue I didn't have that feeling that diagnostic tools had failed me and I needed to get rid of my breasts asap.  I decided that for me I would do the lumpectomy and if there is a recurrence I can have a mastectomy then - I guess I had more fear of the effects of the mastectomy than of recurrence. 

I brought up the issue that ILC is oftentimes missed by imaging, and the doctors who said I could do lumpectomy all said things like "you'll be followed very closely - if you have a recurrence we'll find it."  Maybe I'm naive for believing them, but since I was given the option of lumpectomy I took it - I was very afraid of double mastectomy and lymphedema.  I didn't want to risk both arms if I didn't have to.  If all of the docs had said no to lumpectomy I wouldn't have done it, but for me the vote was 3-1 that it was reasonable.

A dear friend had a lumpectomy for ILC, chemo, rads and AI's. She was in her 50's. She just reached her 5 year anniversary.

I had an ILC tumor, 1.2 cm, mast, no chemo, no rads, and Femara at age 61. Age can make a difference with early stage BC treatment. I wanted a lumpectomy, but was urged toward a mastectomy because the tumor was in the cleavage area and would leave a large "defect". An MRI and a PT/CAT scan showed no other involvement besides the tumor. A double was also suggested by the surgeons, but my oncologist said there was no medical reason to do so, thus a single mast. was my choice. 

Are your doctors suggesting a mastectomy? Or are you wondering if you've done enough? 

I had a lumpectomy for a 2.7cm pleomorphic ILC tumor that was right up to the chest wall, clean margins, extensive pleomorphic LCIS left in the breast that extended into the pectoralis muscle. Oncotype 18, did chemo and rads, am now on Tamoxifen and Zometa.

Remember, the adjuvant therapy the doctor recommends for you is not based on the surgery you chose. Mast=lump+rads, so having a mast doesn't mean you get to skip chemo and rads if the biology of the tumor/size of the tumor/your age, etc., warrants it.

Annie ~  Did you have an MRI?  I initially had a lumpectomy for a mixed ductal/lobular lesion.  But when the pathology from that came back with some oddities, I went for a second opinion, and the second  MRI I had (a month later; my first MRI had "obscured" areas that no one worried about) found 2 tiny lobular lesions.  I had a mastectomy, and the pathology from that found one more very tiny lesion (5mm) in a piece of breast tissue my BS trimmed at the last minute mostly for cosmetic results.  So, I actually had 4 lesions when my original BS only took out 1!  

My concern re. lumpectomy is how carefully has your breast has been examined for other possible tiny lesions.  I know we like to think that chemo and/or rads will get anything that might be left behind, but someone made the point to me that after surgery the blood supply to your breast is somewhat compromised, so there may be areas the chemo doesn't reach.

Just some food for thought from my own experience --   Deanna

It has been a year and a half.  I had TCH chemo and radiation.  I just finished the herceptin two weeks ago and am feeling better every day!  Hope all goes well with you.  My hair is growing fine, and my fingernails are coming along!  It gets easier as time goes by!

annie--my mom had ILC many years ago. She had lumpectomy, radiation and tamoxifen, and is doing very well after 22 years without a recurrence.

Anne

Maybe someone who had a tumor similar to your size will chime in on when they had chemo.  I know I've seen quite a few posts where people have had chemo to shrink the size of the tumor before surgery.  I don't know if that was so they could try to have clean margins on a lumpectomy, if it was necessary to get clean margins on a mastectomy, or if it is just standard to try to reduce the size of a large tumor before surgery. 

Anyone who has gone through this and knows the answer?

My tumor was officially 2.2 cm, but that was only the dominant part. The MRI showed it as extending up to 6 cm in some directions, so MRI was used to guide the surgery, which was successful after one reexcision. Luckily I have large breasts and the tumor was in the lower outside quadrant and concentrated in the same area, so it was possible to get clear margins and good cosmetic results.

If ILC or LCIS is in more than one part of the breast, then mastectomy is more likely to be recommended.

Yes in 2003 had 2.5cm Ilc had a lumpectomy chemo 4 ac then radiation for 5weeks   5years of   Arimidex    and Iam still neds

I was diagnosed with invasive lobular cancer, LCIS and hyperplasia in Feb, 2009.  I had a lumpectomy and then a reincision for a clean margin.  .9mm, stage 1, grade 2 with an oncotype of 19.  That's what threw me.  Just over the medium range.  My oncologist said it was my choice to do chemo or not, but she recommended against it.  So I didn't do it and am taking Femara now, but second guessing the chemo part since my number was 19.  I also had 5 weeds of radiation.  Scary.  Will it come back?  $64,000 question.  r27784y

That helps a lot.