Join Us

We are 220,438 members in 84 forums discussing 161,930 topics.

Help with Abbreviations

Topic: Reconstructive surgery after mastectomy

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

Posted on: Nov 21, 2018 04:00PM

Sara_l wrote:

Hi ladies,

For those of you who have had reconstructive surgery after mastectomy, can you please share your experience? Are you happy? Would you change anything? For those of you who did a single mastectomy, do you wish you had done both?

Sorry for so many questions, I am so confused, not sure what is my best option.

I have an option of doing either lumpectomy or mastectomy. I have stage 1, 0.8 cm, grade 2.

Thank you,


Log in to post a reply

Page 1 of 1 (10 results)

Posts 1 - 10 (10 total)

Log in to post a reply

Nov 21, 2018 04:14PM Samnjb wrote:


I have ilc too. I had double mx oct 10. I had dmx because I am young (38) and had VUS on my genetic test for palb2.

I will say I had never had a mammogram, mine presented as a lump almost on my sternum. If it hadn’t been there I don’t know I would have found it.

At diagnosis they said it was . 7cm, after surgery it was 1.5cm. My nodes were clear (3 taken) but they found a second ilc growing that was .6cm.

It’s still to close to me to say I regret it or not. But the whole thing has shook me up badly. I am not sure I could have Lived with my other boob knowing the fear that the “phone call” put in me.

As for reconstruction it has been a breeze for me. I have tissue expanders in and have had no pain. I came home and was off the medicine in a day. I still took Tylenol. I recently had pain in my armpit from a bra I was wearing.

I made sure to tell have a PS that put the implant above the muscle. That seems to be a big deal.

I guess for me if I were you age would be a deciding factor for me. Also how traumatic this was for you.

I wish you the best of luck, I am sorry you are going through this too


Dx 9/2018, LCIS/ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 21, 2018 05:30PM dakrock wrote:

I Had ILC and mastectomy of my right breast.  Because it was in several areas breast surgeon said Mastectomy was the best thing to do.  I did have immediate reconstruction with nipple sparing.  I did not have to have expanders because they put it right on top of the muscle so I had both done at the same time.  Since I still have my left breast it feels weird because I can feel the difference between the two.  The reconstructed breast feels heavy to me.  I wanted to have both done at the same time but the surgeon said it would not be covered because the left breast was fine.   I think if I had it to do over I would still do the same.  Its probably more comfortable to have both breast done because you won't notice the difference so much.  I am older also (72) so I really didn't care about even doing the reconstruction but surgeon said I was so young looking I would hate myself.     I don't really think I would  

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Nov 21, 2018 08:51PM Dani444 wrote:

I also had ILC in my right breast and had a UMX with direct to implant. I have a silicone gel implant with alloderm. I wasn’t able to keep my nipple but plan on getting a tattoo later on. I have to do radiation next due to positive nodes so hopefully my implant does well through that. At this point I don’t regret keeping my good breast. My PS said I can get a surgery on the left if needed to make me more even and insurance will cover that for symmetry. I just wasn’t ready to lose all sensation but completely understand why women would choose bilateral. Also, in the end I didn’t have the choice for lumpectomy due to my tumor size. My implant is on top of the muscle and recovery has not been that bad. Best wishes, it’s a hard decision but you will choose what is best for you, and that will be the right decision.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 21, 2018 10:04PM LiMa66 wrote:

I was dx with both ILC and IDC in my left breast. Had a bilateral mastectomy with tissue expanders placed. Then due to 2 positive lymph nodes I had radiation, which caused skin damage. No PS would do the exchange to implants so I went with DIEP flap reconstruction. I found the perfect PS and am now 2 weeks post-op and doing well. It was a big surgery but I'm so pleased with the results.

Whatever you decide to do, make sure you do it for YOU. Best wishes.

I believe I can Dx 10/26/2017, ILC/IDC, Left, 2cm, Stage IIB, Grade 2, 2/6 nodes, ER+/PR+, HER2- (IHC) Surgery 1/31/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/9/2018 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 11/5/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Nov 28, 2018 11:38AM claireinaz wrote:

I had it with nipple-sparing, immediate recon (no expanders). I am happy overall with the look--I had to have some fat grafting the year after surgery, but that was easy too.

I lost all sensation in my breasts, which is weird, and makes me sad at times. My implants get cold at times when I'm outside exercising in the cold--I live in a colder climate with snow, so that's interesting.

The surgery itself was a non-event for me. I was in 2 nights and probably could have gone home the next day. I don't remember any pain at all.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
Log in to post a reply

Nov 28, 2018 04:14PM Gracejoy wrote:

I had only right breast mastectomy without any reconstruction. I am very happy with my decision not to remove my good breast. Because I am married and sexually active and having sensation on my left breast and not losing both breast make me very happy. Besides looking at my healthy breast and not completely loosing both was best decision for me. I am fine wearing bra with breast forms. For me having a healthy life matters more than anything else. We are all very different the choice you will make will be the best one for you

Best wishes

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 28, 2018 05:51PM exbrnxgrl wrote:

Losing breast sensation is to be expected as all underlying breast tissue, including the nerves are removed. Some skin sensation may be regained and some report the return of deeper sensation (though I don’t understand enough about biology to know how/why that happens, since implants have no nerve endings). Overall, one should not expect to regain true sensation with implant reconstruction

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Nov 28, 2018 08:57PM Lynnvi wrote:

I was diagnosed at the end of May 2018, with ILC, Left, 2.9cm, Grade 2, 1+ Lymph Node, ER+/PR+, HER2-, and Genetic Test PALB2+. I saw the oncologist on June 13, 2018 and then started chemo on July 3, 2018. I was given 16 weeks/8 sessions of chemo (didn't receive the 8th round due to numbness in feet and hands) to hopefully shrink the lump enough to spare my nipple. I plan to have a double mastectomy and flap reconstruction BUT am so confused now because the surgeon told me I would need radiation after surgery. NOW I don't know which route to take and none of the doctors want to give me their "best option" opinion. I know radiation can effect the reconstruction but can also effect the nipple with the expanders if I wait for reconstruction. SO I don't know which way to go - I only had chemo (since they weren't sure it would help since I am hormone positive and will end up on the hormones for 5 years) to help save my nipple and don't want to now lose it after going through the chemo. Has anyone else had to decide in regards to reconstruction whether to wait or not before radiation? I hope this made sense as I am very confused...

Dx 5/17/2018, ILC, Left, 1cm, Stage IIIB, Grade 3, 6/23 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/6/2018 AC + T (Taxol)
Log in to post a reply

Nov 29, 2018 03:19AM Meow13 wrote:

I had single mx with DIEP reconstruction. I am very happy with both choices.

Log in to post a reply

Dec 1, 2018 01:34PM macmomma wrote:

I was diagnosed with ILC 6/2018. Due to a very complicated biopsy, I didn't have surgery until 8/2018. They told me I had about a 4-5mm tumor by MRI, but it wasn't really clear because of the botched biopsy and how it interfered with the MRI. I opted for BMX with immediate DIEP recon. Had that on 8/6/2016. My reasons were: 1. ILC is often bilateral and since they didn't pick it up on mammogram the first time, I didn't have a lot of confidence that a recurrence in the contralateral breast would be found if I opted for a smaller surgery. 2. I had a 9 cm hematoma after the biopsy, and that would have almost been a mastectomy anyway in that breast, so might as well go ahead and do both. 3. I didn't want radiation, and 4. My gut told me to.

I have absolutely no regrets. It was a very hard surgery, and I was just about getting recovered by early November when I decided to have phase 2 of the DIEP, so I'm still recovering. I would still do it again in a heartbeat. I feel like I've done everything I could have possibly done to beat this f****er. I was very fit and healthy before the surgery and I think that helped.

Take your time. When I was diagnosed, I wanted the mastectomy the next day. God provided me the hematoma which slowed things down and gave me a chance to consider all my options. The only thing I really could have done differently would have been to get a second opinion from a large cancer center (MDA, Dana Farber, etc) before proceeding, but because my husband is being treated for myeloma in a distant city, I really needed to get my treatment at home. Also, PRMA plastic surgeons is here and they are some of the best in the world. I am happy with the care I received.

Shortly after my diagnosis, my dear friend was diagnosed with IDC. She knew all of my thought processes and decisions, but she went to MDA, and has been very happy with her decision for lumpectomy and radiation there, and I completely agree with what she decided. So, it's really a personal decision at this point.

Page 1 of 1 (10 results)