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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Mastectomy vs Lumpectomy with a Lobular diagnosis

Topic: Mastectomy vs Lumpectomy with a Lobular diagnosis

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

Posted on: Jan 29, 2010 06:55AM

somersher wrote:

Would anyone share their decision making process with me concerning whether to have a mastectomy vs lumpectomy, and if mastectomy did you do bilateral due to lobular's tendency to recur?  I had a lumpectomy three weeks ago but the margins were not clear, and I also had micromets.  Dr says no need to remove axillary nodes and the plan is to do a wider exision, but I'm getting scared.  Can anyone offer advice and/or experiences along this line?  Many thanks

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May 4, 2017 08:45PM quaydvt wrote:

Thanks Kim - Surgery went very well! I'm 10 days post and doing great. Drains came out 2 days ago, dropped my friend at the airport for her trip back home. Driving, walking the dogs (was doing that 2 days post for short distances), laundry, cooking - everything. Still waiting on the pathology, but the surgeon is optimistic! Should know in the next day or 2.

But, because everything has gone so well, I WILL be able to head down to WA and pick up my motorhome!!! Bought it last November, anticipating a nice summer of light travel, trip back east to visit family, and then THIS!!! But... just a bump in the road - big bump, but a bump, none-the-less.

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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May 4, 2017 10:52PM Jujube2 wrote:

quaydvt! What an uplifting message you have!!! Here's to bumps in the road that we successfully navigate!! Yay to you! May your healing and awesome attitude continue !!!

;) you are in my prayers!

Dx 4/2012, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+, HER2- Hormonal Therapy Aromasin (exemestane) Surgery Mastectomy: Right; Prophylactic mastectomy: Left; Prophylactic ovary removal; Reconstruction (left); Reconstruction (right): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement
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May 6, 2017 08:10PM quaydvt wrote:

Thanks jujube! I am trying not to live my life according to cancer (I think I said that somewhere else on the forum - for me, the reason I chose a BMX instead of lumpectomy and rads). There's always a bit of bluster in there - the more you project confidence, the more you truly embrace it - Fake it till you Make it!

Once I get the coach and start to travel, I may start a new topic (or look for one that already exists) so we can start to personally touch base here and there.

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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May 22, 2017 04:24AM robinblessed54 wrote:

quay, Your attitude makes all the difference! I too have an upbeat attitude knowing my decision was the best for me. I am 2 1/2 years post bmx. I had recon but attitude is everything!

Blessings, Robin


Dx 9/2/2014, ILC, Left, 1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 9/25/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/15/2014 Arimidex (anastrozole) Hormonal Therapy 12/30/2014 Aromasin (exemestane) Surgery 3/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/14/2015 Femara (letrozole) Surgery 12/21/2016 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
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May 23, 2017 09:48AM Chloesmom wrote:

We ordered an RV when I was diagnosed. It was something to look forward to being delivered when the treatment was done. Happy trails. We love the RV life!

No recon - Loving Flat & Free! Oncotype 25 (Note: ILC hides in the shadows- US, Mammo, MRI neg on "good" side but not really good after all!) Dx 11/21/2014, ILC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- Hormonal Therapy 11/24/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Surgery 12/11/2014 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 2/2/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 24, 2017 08:06AM Meow13 wrote:

sounds good Chloesmom.

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May 26, 2017 07:39AM quaydvt wrote:

The vacation/retirement plan!

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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Apr 28, 2018 04:36PM SLL101984 wrote:

I see it’s been about a year since any posts on this thread...I am currently in the position of deciding on lumpectomy or bilateral mastectomy. Any ladies still around these boards that can give an update on your situation? Still happy with your choice

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 28, 2018 06:29PM quaydvt wrote:

Good morning SLL - I appear to have been the last post on this thread - and I am happy to report that all is great, recovery went well and I have absolutely NO regrets about the decision I made. In fact, to me, at the time, it wasn't even a decision. With ILC, in my situation - living on my own, mid-60's and currently in good health, I wanted to do what made the most sense for me. The difficulty (read - almost impossibility) of getting clean margins the first time in for a lumpectomy, not knowing if I could get live in help a second time (for the second go-round, let alone possible 3rd) and what kind of health I might be in farther down the road, the choice was obvious for me.

Recovery was quick (I had no recon BTW - don't regret THAT either!) no need for radiation (which is necessary with lumpectomy) and I have had a very uneventful year! I am on exemestane AI - started on letrozole but it really didn't agree with me - so we tried a different one, and I'm doing fine). My surgeon and my onc are both happy, and now it's just coasting and monitoring. Retiring in a couple of months and life looks good.

That little GMC RV above your post? That's my plan for the summer ;)

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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May 3, 2018 08:06AM - edited May 4, 2018 02:50AM by lohoff

I had a lumpectomy in December 2016, followed by chemo then radiation. I would prob do it differently today. I would have a complete bilateral mastectomy and skip the radiation. For me radiation was worse than the chemo from day one. I'm still fighting fatigue and my last radiation treatment was June 7 th, 2017.

Just trying to figure this all out! OncotypeDX score: 30; 4 cycles of chemo, 30 rads Dx 11/22/2016, ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Surgery 12/21/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/23/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/25/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/4/2017 Arimidex (anastrozole)
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May 3, 2018 11:44AM Meow13 wrote:

lohoff, they really down play the effects of radiation. I am so glad I didn't need radiation. My skin is so sensitive. I could not stand any damage. I had only single mastectomy with ilc and idc tumors. Seven years out and no regrets.

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May 3, 2018 05:05PM dtad wrote:

Hi everyone...I had one IDC tumor and one ILC. The ILC was missed on both the 3D mammo and ultrasound. It was only picked up on a preoperative MRI for the IDC. That was the main reason for my decision to have a BMX. So difficult screening and knowing I would refuse anti hormone treatment helped me to decide on a BMX. I had direct to implant reconstruction which I'm happy with. I'm 3 years NED.So far so good! Hope this helps.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 4, 2018 01:59AM Meow13 wrote:

My oncologist said take anastrozole to protect the other breast. I wonder if you have bilateral mastectomy just how important are AI drugs? Probably not that important.

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May 4, 2018 06:25AM quaydvt wrote:

Hi Meow13. I had a BMX and still take the AI's (i'm on exemestane - letrozole didn't sit well with me!). They don't just protect the other breast, they help prevent/minimize distant recurrence - bone, lungs, etc. The breasts aren't the only place that can be affected by BC.

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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May 4, 2018 10:29AM Meow13 wrote:

I do realize, painly realize it, but breast cancer appearing in breast tissue that is estrogen fed is probably more significant a risk.

Now I am not screened at all on the reconstructed side because the tissue isn't breast tissue but from my abdomen therefore the screening deemed unnecesary.

I think dtad might have had this explained as a reason to do a bmx. I know that AI drugs are a systemic treatment but local recurrence vs distant recurrence never really distinguished as far as risk reduction.

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May 4, 2018 10:35AM Meow13 wrote:

You know I probably didn't say it correctly. Risk of a new primary estrogen positive cancer in the other breast was a strong reason to take AI drugs, bmx can reduce that greatly. But the recurrence in a distant location also can be lessened with AI drugs but I have yet to see the risk reduction percentage in that case. It may also relate to stage and lymph node involvement.

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May 4, 2018 11:10PM Momine wrote:

Meow, AIs cut metastatic recurrence risk by 50%. How much you benefit depends on how great your initial risk is.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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May 4, 2018 11:36PM quaydvt wrote:

I agree with you there Momine - my oncotyping showed me as mid-range (~14%) possibility of distant recurrance with tam (can't take that d/t also on wellbutrin), chemo on top of that wouldn't decrease that considerably, but taking the AI to cut that back by another 50% seemed well worth it to me. Depends on your tumour-typing and how well you tolerate the AI I guess. Meow, I guess my point earlier was just that I wouldn't consider them "not that important" as a general rule just because I had a BMX. Another one of those "it depends" situations :)

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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May 5, 2018 06:32AM Meow13 wrote:

Yes I was hoping for more data, my oncologist emphasized the AI protecting me from another primary in my real breast. I am not sure why it could be the small tumors and lack of node involvement but I see comments from people that had similar situation jump to stage 4. But it could be they really were stage 4 from the get go.

ILC accounts for about 10% of breast cancers and er+ pr- also a smaller group. You just make a decision on treatment based on statistics and gut feel.

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May 5, 2018 08:36AM quaydvt wrote:

I hear you, Meow. I suppose they can never know if one nasty little cell managed to sneak away from the original mass and by-pass the LNs. It is an ILC after all and I guess that's the theory behind the AI's afterward. Micro mets that no one would have any way of detecting. I didn't do a BMX because it would give me a better chance of survival - I know full well it doesn't. I did it because I wanted my life to have as smooth a road as possible now that I am about to retire. Didn't want the likelihood of a 2nd or possible 3rd surgery to get missed margins, plus radiation, and if I was gonna take one, I figured take both and keep myself balanced :) No recon so easy recovery and far fewer complications. No regrets at all.

So, I'll take the exemestane and live with the few issues that I have with it and be reasonably comfortable that I have done what I can to come out of this in good shape. One year in and so far, so good. My BS is happy as is the MO.

Dx 3/1/2017, DCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/23/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 6/8/2017 Femara (letrozole)
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May 5, 2018 09:40AM Teaberry11 wrote:

Below is a slide from the ILC symposium held in Dec 2017. The left shows recurrence rate when taking AI. The right shows NOT taking. For ILC especially I will be taking the AI as long as MO recommends .


Dx 1/8/2018, ILC, Left, 2cm, Grade 2, 2/27 nodes, ER+/PR+, HER2- (FISH) Surgery 2/12/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/6/2018 Femara (letrozole) Surgery 6/3/2018 Reconstruction (left): DIEP flap; Reconstruction (right): SIEA flap
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May 5, 2018 09:59AM Meow13 wrote:

Teaberry, I quit at year 4 my oncologist was ok with it. I did it as long I could stand the side effects.

Those charts look they go out for 15 years, does that imply the patients were taking AI drugs for 15 years?

Look at the difference between 5 and 10 years.

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May 5, 2018 10:01AM - edited May 5, 2018 10:03AM by Meow13

I happened to have one of each idc and ilc. Also does it distinguish local vs distant recurrence?

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May 5, 2018 10:06AM Teaberry11 wrote:

Meow - They are saying 5 years for now and still researching if 10 years is better. Here is a link to the whole presentation.

https://ldi.mediasite.com/Mediasite/Play/67ea41715f004df4b0d2956023fdd7a21d

Dx 1/8/2018, ILC, Left, 2cm, Grade 2, 2/27 nodes, ER+/PR+, HER2- (FISH) Surgery 2/12/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/6/2018 Femara (letrozole) Surgery 6/3/2018 Reconstruction (left): DIEP flap; Reconstruction (right): SIEA flap
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May 5, 2018 10:10AM Meow13 wrote:

Thanks, I would consider going back on AI, I really don't want to because I feel so much better now that I am off.

When I had SE's they were cumulative in the first 6months I was fine then the joint pain was too much after 2 years then switched to exemestane and after almost 2 years severe dry eye and joint pain got too much.

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May 16, 2018 12:28AM TRex224 wrote:

My diagnosis of ILC came at 51 years old, after neglecting to have a mammogram for 6 years. Biopsy was discordant, lumpectomy didn't yield clean margins, and I felt like a ticking time bomb. Instead of an additional lumpectomy with sentinel node biopsy, I opted for a BMX. For me, it was the best choice because I'm always worried about something and I need to sleep at night. Thankfully, my nodes were clear and I won't be needing chemo or radiation. I started my 5 year plan on Tamoxifen. I'm in week 4 post op from the BMX, and I start expansion tomorrow. I used to think I was tough with pain, but this surgery was quite humbling. I still struggle with range of motion and hand strength. I am always uncomfortable with any material against my chest, cannot find any type of sports bra or T-shirt that feels good against my skin, I have constant phantom boob sensations which probably are the most difficult thing in my opinion. I have no regrets about the surgery, but I do wish I was better prepared for the little things that I have been experiencing. I'm still unable to sleep on my side, driving is not even on my radar yet, being a passenger in a car is brutal because all the bumps are painful, and the loss of my independence has been stressful. I keep telling myself this is finite.

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May 16, 2018 02:30PM SLL101984 wrote:

I was diagnosed with ilc almost a month ago and will be going in for a BMX on Monday. Opted for this route because of my age, 33, and the fact that I am small to begin with and my mri picked up on another spot in my breast. If one comes off they both do. I feel this is the only way I’ll get some sleep at night going forward. Fingers crossed I don’t need radiation and/or chemo.

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 17, 2018 04:09AM gkbuser wrote:

could someone with more knowledge on invasive lobular carcinoma comment on this article I read? Especially where it talks about survival I'm a little freaked out.https://www.dovemed.com/diseases-conditions/invasive-lobular-carcinoma-breast/?trendmd_shared=0

Dx 10/24/2016, LCIS/ILC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/10/2016 Lumpectomy: Right Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Radiation Therapy Whole-breast: Breast
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May 17, 2018 04:29AM SLL101984 wrote:

Gkbuser- I try and stay away from articles if they aren’t found on websites that end in org or edu. For the same reason they say not to google or webmd symptoms!

Dx 4/18/2018, ILC, Left, 2cm, Stage IA, 0/5 nodes, ER+/PR+, HER2- Surgery 5/21/2018 Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 17, 2018 04:32AM Georgia1 wrote:

Hi there. This looks like a standard overview article, by which I mean it's not wrong but it is pretty vague. Reading about survival rates is always heart-stopping, but there is such a difference between Stage 1 and Stage 4 recurrence and survival rates that lumping them into one category isn't particularly useful.

I guess my point of view is to take this journey one day at a time; look forward and not back; take the drugs that will help unless side effects are overwhelming; and get back to the basics of eating right, exercising and enjoying life.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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