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Topic: Surgery Schedule, what next?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Feb 2, 2008 10:44AM

Krogers wrote:

I was recently diagnosed with ILC in December and am scheduled to have a Bi-lateral Mastectomy with Latissimus Dorsi Flap + expanders on 02.13. I received treatment options from 2 different PS and am trying to weigh out my options. Does anyone have experience with this type of procedure and how should I decide if the Latissimus Dorsi Flap is right for me? My PS says there will be minimal scaring on my back and that it will improve cosmetic aesthetics in the front. But from what I am reading, it appears that numbness and chronic pain could be a risk. Thoughts, anyone?

Dx 1/14/2008, ILC, Grade 1, ER+/PR+, HER2-
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Feb 2, 2008 09:01PM LauraGTO wrote:

krogers - I'm sorry you have been diagnosed with bc. Hang in there...we'll help you through this. In regard to ps, I really think you should post this in the Reconstruction Forum. Those girls have a lot of experience and knowledge and I'm sure they would be able to help you with your decision. I had an expander put in at the time of my first Mast., but had it removed two weeks later because I couldn't handle the pain. BUT...many girls here are very happy with their reconstruction. One of my friends had the Lat procedure, and she is very happy with the results. Best wishes to you...keep us posted on your progress. Will you be needing radiation? I'm assuming - no chemo???

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 2, 2008 09:41PM lizws wrote:

Hi Krogers,

Sorry you're here.  I didn't do the Latimus Dorsi Flap but did do the bilateral with immediate expanders.  I know a girl who did the latimus and she did say it was extensive surgery as well as a bit painful.  Did your PS say why he recommended that particular procedure?  My expanders were placed under the pectoral muscles and I am very happy with the results.  Yes, I do have scars across each side but they are fading and that doesn't bother me at all.  I haven't even done nipples or tattoo's yet.  I'm 2 years out of diagnosis. 

As Laura said, post in the recon thread.  I'm sure someone will come along who has had that procedure.

Hang in there - we're here for you.  No question is a silly question.  We've been where you are.

Hugs

Liz

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Feb 4, 2008 09:45PM Krogers wrote:

Thank you Ladies...thank you so much.

So far, my doctor's have said chemo, definitely - I'm guessing because of my age. But, as for rads, well they haven't decided that. Will wait until they know the prognosis of the nodes.

It seems like everyone has their own experiences, and I will just have to pray and leave it all in God's hands as to what to do. I plan to meet with both surgeons prior to surgery next week.

In Him...

Dx 1/14/2008, ILC, Grade 1, ER+/PR+, HER2-
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Feb 5, 2008 02:03AM Krogers wrote:

Okay, I've been reading more and asking more questions out there in 'real word' (vs. cyber world) and now, I worry about my nodes more and more...

LauraGTO?... Liz?...

Did either of you test the sentinel node before your surgeries? I'm starting to fear the unknown...

How did you handle or have you had to experience chemo? What drugs were you given? Tamoxifen...? What's that for? Questions...

Dx 1/14/2008, ILC, Grade 1, ER+/PR+, HER2-
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Feb 5, 2008 04:13PM LauraGTO wrote:

Krogers - At the time of dx, due to the size of my largest tumor, I had to have a full Mast. The day b/4 the Mast, I had to go to the hospital so they could inject die into the nipple to let it "find" the Sent Node. So...the next day, when I went in for the Mast., they were able to locate the Sent Nodes (I think I had 2). They tested both, right there during the Mast. Both "looked" negative. But they also send them to a lab for a more more thorough "pathology" testing. As it turned out, 1 came back positive. So...2 weeks later I went back into the hospital and they removed 11 Axillary Nodes and all 11 were negative. Had the Sent Node showed positive during the Mast., they would have proceeded to remove the Axillary Nodes right then and there. Dr's have different techniques and different procedures to deal with node testing and dissections.

Hopefully others will chime in re: their own experience.

Due to the size of my tumor and the fact that it was multi-focal, and a positive Sent Node, yes, I did have chemo. It was tough. I was numb with fear, but it's do-able. I had the standard - 4 A/C, 4 Taxol over a 16 week period and then 28 radiations.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 5, 2008 11:21PM lizws wrote:

Krogers, sorry I haven't replied.  I had the injection for the SNB several hours prior to my surgery.  They removed 4 nodes and 1 was positive.  I did 4 rounds of Adriamycin/Cytoxin every other week and then 4 rounds of Taxol every other week.  As Laura said, it's not a walk in the park but it is doable.  Once you find out your game plan, I have a list of tips I'll send you. 

Tamoxifen is a drug given to pre-menopausal women after chemo.  I am post-meno so I take Arimidex.  Don't get ahead of yourself.  One step at a time.  I am sending you some questions for your oncologist.  Just a few things that might help you when you see him.  I will go ahead and include the chemo tips as well.  That way you'll have it all.

Hang in there -

Hugs

Liz

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Feb 6, 2008 01:54AM - edited Feb 6, 2008 01:55AM by SLH

Hi Krogers,

My dx was the same as yours, ILC stage 1.  I opted for bilateral w/expanders, but have recently had them removed after 3 years of muscle problems.

I had the SNB the day before my surgery.  I always encourage women to insist on local anesthetic before the injections.  For some reason, a few of us had to do it the hard way without numbing first, and the pain is intense.

I had the sentinel node + 3 others out, all negative, so I didn't have rads or chemo.  6 months later I had my exchange surgery, and then a complete hysterectomy.  Then I started Arimidex which hasn't been a problem for me.  If your pre-menopause you'll be given Tamoxifen, post- gets an Aromotase Inhibitor, either Arimidex or Femara.

It doesn't sound like you'll be doing chemo, with stage 1, unless it's in nodes.  But I would investigate the Lat Flap thoroughly if I were you.  Some of those surgeries that require muscle transfer are serious business.

sally 

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