ILC poll

marshakb

For those of us diagnosed with Invasive Lobular Carcinoma. Please respond to the following poll regarding you final surgery procedure. Thank you. Marsha

Sandra1957

Bilateral Mastectomy after two stereotactic needle biopsies and a wired-guided excisional biopsy (could have been the lumpectomy with clean margins after a follow-up SNB).

Lynn12

Marsha, as I've mentioned, I had single mastectomy, but I voted for bilateral because that's what I'm ending up with in December and your question says 'final' surgery.

swimfan

Hi Marsha, I've been following your threads..I voted single Mast. so far but at some point I will want the other evil off too! When first diagnosed in April, I truly thought through internet research that I would lose both. The surgeon felt that at the time we should just do one where we knew the cancer was (Apr 23) and monitor...Now however after finishing 4AC July 20 and getting ready to Start 12 Taxol next week and having had my first "evil mother of all biopsies" on the "good breast" July 12th (whew B9) I think I will be having more discussions sooner about taking the other off! Both Biopsies were core-needle...the 4.6cm ILC biopsy went like "butter"...5 chunks no pain, no bruising, no blood but yes ILC...so I wasn't sweating the July bio at all...OMG! The follow up MRI found "lesion" was soooo fibrous, the doc could not get the needles through...first procedure during this whole time I've cried! Thank goodness the first one was easy or I never would have gone back!!!!

Oh yes and I have the added joy of being ILC AND TRIPLE NEG.

Good Luck on your battle and I'll let you know if I find out any tips when I start my fight for the "time to lose the lefty".

Robin

scarednancy

Hi Marsha,
As I've probably mentioned before, mine was 1.1 cm and my MRI's showed no other cancer so my surgeon really didn't even discuss any procedure other than lumpectomy. At that time I was such a basket case that I couldn't even think to ask questions. I'm so sorry that your doctors aren't cooperating with your choice. I just hope and pray that none of us get it back.
Take care,
Nancy

wallycat

1.8cm, no nodes...
opted for bilateral.

bbmom

I had the rt removed at time of dx. and the lft removed when I did recon.

karen1956

Marsha - As you know I had a bilat. Luckily, both the surgeons I interviewed when I was Dx recommended a bilat. It was one of my questions and I didn't even need to ask it. I am glad I did as my left side was pre-cancerous. Right, BC side had 3 tumors and lymph node involvement even prior to surgery. Good luck to you in getting what you know is best for you. Hugs from denver. Karen

marshakb

Bumping in case you haven't responded. Thanks

suzfive

Hi Marsha,

I was diagnosed with ILC in December 2005. Final surgery was prophy right mastectomy in September 2006 after chemo and rads (rads finished in July 2006). I have been very fortunate - my docs will do anything for me if it gives me peace of mind. I am a worry wart and was even afraid to do BSE for fear of what I might find in that breast - so it had to go. Path report came back precancerous so that just validated my decision. I sincerely hope you can convince your docs to do what YOU want. Can you claim that it is for symmetry? I hate bras - have prostheses but rarely wear them - just go flat most of the time - couldn't do that without the surgery. Grasping at straws here I guess - just hope you get what you want.

Good luck.
Hugs,
Suz

Anonymous

Marsha---my mom is the almost 21 year survivor of ILC--had lumpectomy, rads, tamox. (I have LCIS; fortunately nothing invasive yet, but I would choose bilat. mast. if it is ever found.

Trish03

Right mast at time of dx, left PM two years later at time of DIEP.

ValerieF

I chose a bilat mast. I had seen my mom die from bc, and read about the high incidence of bilat bc in ILC, and chose the bilat mast. Besides, losing two breasts really didn't seem any worse than losing one.

terricarolyn

i was diagnosed with ilc in dec 2005. offered choice of mast of lumpectomy--i chose mast with immediate recon.

WandaG

I was diagnosed in Aug '05 and had right mastectomy, I wanted a bilateral, but the breast surgeon wanted to do a single mastectomy and monitor the left side. The surgeon thought the tumor was 2.5cm, but it was 7.5. After such a large tumor, when I asked for a left mastectomy in Apr '07 the Dr. said ok. I'm so glad to be flat chested.

kc5

I was diagnosed with ILC in 11/2005; 2.3 centimeter tumor.  Opted for lumpectomy with sentinel node biopsy, followed by chemo, radiation and hormone therapy (Arimidex).

minuet

I had a multiple foci so was advised to have a mastectomy which I did.....I'll have a pm on healthy breast eventually. Just so tired of being in treatment....need a break. Thought maybe towards the end of my hormone therapy. Wish I had done the bilateral right from start but surgeon wanted me to wait.

RaeMN

I was diagnosed with ILC in 10/2005; 1.5 centimeter tumor.  Had MRI showing no other signs of lump involvement.

Opted for lumpectomy with sentinel node biopsy (no node involvement), followed by chemo (CMF), radiation and hormone therapy (Aromisin).

We have to trust you decision.  So far everything is good with all of my tests and it has been 2 years.

Rae

golfer779

Diagnosed 10-3-07, had right mast and s/node biopsy on 11-8.  S/node was negative during frozen path at time of mast.  Low and behold final path showed 1/2 nodes positive.  Went back under the knife 12/13 had axillary node dis.  2 of 34 (yeah 34) nodes positive.

Starting CMF chemo on Jan 10th.  My complete diagnosis is posted!

Little-G

I was dx 2 years ago, had lumpectomy and SNB, not clear margins, went back in, clear margins, 7 weeks of radiation and had my ovaries out.  Lots of tests in between. 

g

Maire67

.

mreilley99

8-06-sln bx =neg nodes

8-06-lumpectomy=dirty margins

10-06-bi lat mast=orginal dx at stage1 now stage 3a due to size and lymphovascular invasion.

8 rounds of ACT

35 rads

tamoxifen -05-07

no recon yet-need 2 clean x-rays.

er/pro/+ her2 - 

Little-G

This may be a dumb question, but are all of us with ILC ER,PR+ and HE2-??

g

nagem

That's not a dumb question. The great majority of ILC breast cancers are hormone-positive and her2neu-negative, but it is possible to have a lobular cancer that is hormone-negative AND her2neu-positive. It is rare but it happens. In fact, it happened to me.

carstell

 I am er/pr +, Her2+. I had a left mast on 12/21.Still questioning wether I should have done bilat?!I see oncologist 1/22.

nagem

Carstell, You're the only other person I've ever "met" who is a Her2+ ILC! You know, I initially had a lumpectomy, radiation and chemo, and a year later went back and had a bilateral mastectomy. So you can always decide later if you feel that the additional surgery would give you a greater margin of safety. I had LCIS in the margins and that plus the Her2+ thing made me feel that I wanted the extra precaution. At the time of the lumpectomy I was told it was critical to start chemo as soon as possible, so that's why I didn't act immediately. Having a year to think it over was helpful in making me feel very sure I wanted the BLM. Good luck!

SLH

I was dx Feb 05 with ILC+LCIS in one breast.  The first surgeon recommended lumpectomy with rads.  But when I started researching, my odds of getting it back were against me: Mom w/Ovarian C, sister with IDC & I was premenopause.  So I found a dr who agreed to do a bilateral.

My tumor was 1cm, no nodes. My "good" breast didn't have cancer, but it had been my problem breast for years with lumps.  I'd had 2 needle biopsies, 1 excisional biopsy, and 1 MRI-guided (ouch!) core biopsy.  There were at least 5 more calcified lumps I would have needed biopsied.

I had expander-to-implant reconstruction, a hysterectomy and I'm taking Arimidex.  Next week I'm having surgery to get rid of the implants.  Although they look ok, I'm looking forward to being comfortable again.

sally 

VBG

I was dx June 06 with ILS and IDC in one breast, 1.5 cm mass; stage 1, grade 1, 0/2 nodes ER/PR+.  I opted for lumpectomy, radiation and tamoxifen.  Did not know that ILS can have multiple focal points.  In Dec '07 we found another mass, 6mm that was not eradicated by radiation that is ILS and have now been told that there is another 2mm mass that they also believe is cancer.  I spoke with a surgeon today that told me low grade ILS often does not respond to radiation....wish I knew that 10 months ago!  Clearly tamoxifen did not work either.  I am now planning a bilateral mastectomy and immediate reconstruction.  I may also need to plan to have my ovaries removed since I am premenopausal and will now need to be on an AIs.  Still looking for other opinions from oncs on follow up treatments.

susaloh

had bilateral, rads, tamoxifen. Er/Pr +, Her2 neg (1+).

PeggyDixon

Susaloh, I just had to respond because I was diagnosed on exactly the same day as you with a large ILC tumor, had bilateral, chemo (not neoadjuvant), rads, tamoxifen, and...feeling great!!