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Topic: Just diagnosed ILC, need your opinions please

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

Posted on: Nov 18, 2018 08:41AM

Sara_l wrote:

Hi everyone, I was just diagnosed with ILC, left breast, 0.8 cm, grade 2. ER+, FR+, HER2-.

They did an additional MRI biopsy and found a 0.07 cm tumor in addition to my original 0.8 cm.

I have to decide to do a lumpectomy, with radiation, or go with mastectomy. This is all so new to me, I would love to hear other people's experiences and thoughts here.

Thanks, Sara

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Nov 18, 2018 09:29AM Georgia1 wrote:

Hi Sara. My findings were similar and turns out its not unusual to have two spots of ILC. I had a lumpectomy + radiation and it worked out really well. The "good news" about ILC is that ER and PR positivity is usually high and pills like Tamoxifen work well to prevent a recurrence.

Lots of women choose masectomy tho, for lots of reasons. I'm sure others will chime in soon.

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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Nov 18, 2018 10:15AM Sara_l wrote:

Thank you so much Georgia. How long was your radiation? What were the side effects?

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Nov 18, 2018 07:45PM dakrock wrote:

Hi Sara

I had been diagnosed with ILC and the original choice was a lumpectomy.  However after I had the MRI it showed I had the cancer in several places in my breast. Whole area was 2.9 cm.    Surgeon suggested this was no longer a choice for lumpectomy we should do mastectomy and immediate reconstruction.  I'm glad I had the breast removed because I didn't have to have radiation.....I'm not so sure I would do the reconstruction again with the implant.   I am on Letrozole and other than the side effects from that I'm doing okay.  I have to go back to the breast surgeon this month to have a mammogram on my left breast so that is nerve wracking to say the least.   Keep us posted on what you decide to do.   Good luck.   We'll all be fine that's all I keep saying :)


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)
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Nov 18, 2018 08:17PM lyzzysmom wrote:

Hi Sara, I had 33 sessions of radiation including 5 boosts to tumor area. Everybody is different but apart from some fatigue it was not bad at all, just tedious having to go each day. By the end my breast just fealt like I had a bad sunburn and it peeled a bit afterwards. Lumpectomy was the only thing the doctors suggested, they never considered or even mentioned mastectomy and I was happy to go along with that even though I have a diagnostic mammo every year now.. I think to some extent if depends how stressful one finds future monitoring but I was happy with my decision.

Oncotype DX 12, age at dx 59 Surgery 5/6/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 5/16/2014, LCIS, Stage 0, 0/1 nodes Dx 5/16/2014, ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Radiation Therapy 6/24/2014 Breast
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Nov 18, 2018 09:28PM HeyLady wrote:

Lobular is different than ductal and can show as many spots in one breast and even the breast with no LCIS can get BC. My mammogram showed irregularities. Ultra sound and MRI showed negative but core needle biopsy indicated LCIS - high risk for BC. Six months later chose bi-lateral mastectomy with immediate breast reconstruction, which was the preventative route. Pathology report indicated cancer cell in one breast - took surgeons and me by surprise. Surgeon said I made the correct decision. Unfortunately lymph nodes were not tested pre-surgery and now unknown and difficult to test without breasts. The mastectomy part of the surgery is so-so but the reconstruction (silicone gel implants) make for a slow and painful recovery. I'm sorry for your diagnosis. If I had to do it again I would still chose mastectomy for a lobular diagnosis.


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Nov 19, 2018 07:16AM Moderators wrote:

Sara_l and HeyLady, welcome to Breastcancer.org. We're sorry for the reason that brings you here, but we're glad you've joined us!

Sara, besides hearing from members sharing their own experiences here in the forums, you may want to check out the article Mastectomy vs. Lumpectomy at the main Breastcancer.org site, where you'll learn more on the advantages and disadvantages of both options, of course depending on your particular case.

We hope this helps!

Best wishes,

The Mods


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 19, 2018 07:53AM Georgia1 wrote:

Sara, I was early stage and the surgeon got clean margins so I only needed 16 radiation treatments. I got tired toward the end and got a "sunburn" but that's it. There are several ways to prevent SEs so if there is a facility near you it may be fairly easy. A good RO can give you a treatment plan.

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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Nov 19, 2018 07:59AM dtad wrote:

Sara...are you going to have the second lump biopsied? MRIs are known to show false positives even though it is the best screening toll for ILC and dense breasts. I wouldn't make a surgical decision until you have more information on that second lump.Good luck and keeps posted

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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Nov 19, 2018 08:31PM Sara_l wrote:

Thank you everyone for your feedback and information provided. I have an appointment with my surgeon tomorrow to discuss the pros and cons of each. I have to decide this week.

You ladies are the best, thank you 😘

Sara


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Nov 20, 2018 07:56AM claireinaz wrote:

Another perspective--ILC has a higher tendency to be multi-focal (grow in both breasts), and I had dense breast tissue, which hides cancer from scans. Because I had 5 clear mammos over 5 years which didn't catch the 2 c. tumor, I decided to get rid of all my scary breast tissue in both breasts by opting for a BMX a year after radiation and chemo. After my mammo the pathology revealed hyperplasia in the "good" breast so I was glad to get rid of all of it. PM me if you want more info.

Claire in AZ

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
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Nov 20, 2018 08:55AM beach2beach wrote:

Hi,

I decided from the get go to do a double bmx, so no rads and had no chemo. I had a 7mm tumor which originally they thought was IDC after surgery found out it was ILC. I had very dense breasts and personally felt I could not handle the anxiety of the 6mth surveillance I'd be on. I barely made it yearly from mammo to mammo. I know doing a BMX doesn't totally eliminate the chance of a return, nothiing does but in my mind it worked for me to ease my anxiety a bit. I went straight to implants and had a smooth recovery.

Consider your options and as everyone would say, do what would you feel is right for you.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 20, 2018 03:27PM momand2kids wrote:

Hi

had a lumpectomy with chemo and radiation.. 5 years of drugs-- was the right choice for me- lump was discrete and in one place.... slow growing.

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)

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