Join Us

We are 224,981 members in 83 forums discussing 163,825 topics.

Help with Abbreviations

Topic: ILC in Your Thirties?

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

Posted on: Aug 15, 2020 06:57PM

katiefar wrote:

Well, this is my first post on any message board, ever! I was just diagnosed a few days ago, right before my thirty-seventh birthday. I'm wondering if there are other women in their thirties with ILC? I haven't found any yet, but if you are and are willing to tell your story, perhaps you'll post here?

I found a lump as long as a year ago, but figured it was fibrocystic tissue. I went in for an exam in November, and my NP said she was nearly certain it was a fibroadenoma, that she wasn't worried, but because my mother had breast cancer at 41, that I should check. I put it off for months-- the holidays, travel for work, then Covid. But it was getting larger, changing the shape of my breast, so I went in at the end of July for a diagnostic mammagram and ultrasound, then a biopsy, and they confirmed that it's cancer. I'm still in the information-gathering stage; I just got an MRI confirming most of the original pathology report, and I'm waiting for my oncotype and genetic testing.

I'm concerned about the higher long-term recurrence rate for ILC, especially since I'm something like thirty years younger than the average woman with this diagnosis. Has anyone's doctors talked about this with them? Anyone working with someone specializing in ILC in younger women? Any young woman with this diagnosis want to share anything they learned along the way that might be helpful?

Thank you so much!

Log in to post a reply

Page 1 of 1 (12 results)

Posts 1 - 12 (12 total)

Log in to post a reply

Aug 15, 2020 08:33PM BlueKoala wrote:

I was diagnosed with ILC 4 ½ years ago when I was 35.

35 at diagnosis. Complete response to chemo! Dx 3/15/2016, ILC, Right, 6cm+, ER+/PR+, HER2- Chemotherapy 3/28/2016 AC + T (Taxol) Surgery 9/8/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 10/23/2016 Whole-breast Surgery 6/21/2017 Prophylactic mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
Log in to post a reply

Aug 15, 2020 08:47PM ShetlandPony wrote:

Sorry, I know you asked for 30s and I was not, but I was premenopausal. Because of your age they will probably recommend ovarian suppression/removal and an aromatase inhibitor rather than tamoxifen. If tamoxifen is recommended be sure to investigate the questions surrounding its effectiveness for ILC. Also, I hope they test you for more than just BRCA. Some experts have suggested that the Lynch genes MSH6 and PMS2 may be connected to breast cancer and ILC in particular, as well as the usual Lynch cancers. (I have an MSH6 mutation and so does a relative who had ILC.)

A resource: The Lobular Breast Cancer Alliance

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
Log in to post a reply

Aug 17, 2020 10:47AM wallycat wrote:

My gyn in WI was dx when she was 32 and had 2 babies to raise. Back then, I don't believe they checked on the type of cancer, just went on to treat her. She's well into her 60s (officially retired) now and travels to render free gyn service in countries of need.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
Log in to post a reply

Aug 17, 2020 12:28PM dizzywombat wrote:

Sorry you find yourself here. I was diagnosed with ILC last year at age 37. I'm happy to share my experience...feel free to PM me with any questions!

Dx 10/22/2019, ILC, Right, 3cm, Stage IIIC, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 11/21/2019 AC + T (Taxol) Surgery 4/21/2020 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 5/24/2020 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 7/7/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/29/2020 Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Aug 17, 2020 07:34PM nash wrote:

I was diagnosed at age 38 in 2007. They said Stage 2 at the time, but it now appears i was Stage IV de novo with bone mets. That info didn't get sorted around until recently, when I got a new onc (my fifth one over the years) who actually has a clue about ILC.

I was diagnosed with brain mets in 2018. Just had a new brain lesion pop up, wedged between my ocular nerve and eye muscle. I am also having some major gut issues, and met with GI today who suspect the cancer has moved into my bowels. Am going through workup on that.

There is a lot more attention paid to ILC now than there was a decade ago, in large part thanks to the advocacy of the LBCA. I would encourage you to seek out an onc who has at least a basic understanding of how and where ILC spreads and the best ways to image it, both for local recurrence and mets.

Stage IV Pleomorphic ILC, initially diagnosed at age 38. Mets to brain, cranial nerves, bone and breast Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Hormonal Therapy 7/1/2018 Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy 7/3/2018 External: Brain Radiation Therapy 7/27/2020 External: Brain Radiation Therapy 2/23/2021 External: Brain
Log in to post a reply

Aug 25, 2020 01:38AM jennaru123 wrote:

I was diagnosed earlier this year with ILC at 41 years old, while 38 weeks pregnant with my second child. Not in my 30s but not far off. My deepest sympathies for being in this club. Its not where we should be at our ages.

My surgeon told me that in the past the medical community believed that ILC had a slightly higher risk of being bilateral (occurring in the other breast) but recent studies have shown that is not the case. I haven't looked for any studies to back that up but very much trust my surgeon.

Other than that my risk of recurrence has been discussed with me by two separate oncologists: mine and a retired founder of the regional cancer center, a pioneer in breast cancer research, who does oncology counselling in his retirement. Both have broken down my risk of recurrence as it relates to its PR/ER/HER2 markers, its stage and its grade. Neither of said anything about ILC making it more or less likely to recur. One doctor did note that LC is a 'tricky little bugger' as it grows in sheets, so there tend to be no physical symptoms in those crucial early stages. Happy to DM you if you'd like to hear about my oncology counselling discussion on long term recurrence risk of my ILC.

ILC Dx 3/3/2020, ILC, Right, 6cm+, Stage IIIC, Grade 3, 40/40 nodes, ER+/PR+, HER2- (IHC)
Log in to post a reply

Aug 27, 2020 05:45AM Debbiemarler wrote:

Going for my 3rd MRI this month. This one will be orbital. New mass on my cranial nerve 6, not anything new on the lytic frontal lobe lesion. Saw. a opthamologist yesterday. He had 2 names he gave me if the mass on the crainial nerve is cancer. He said get that one out soon due to vision risks. The lab results she ordered for multiple myyeloma was negative for 'm' but high for circulating myeloma. I am so xonfused. I cant work now cause last week on the drive home I thought Butterflies were talking to me, not scary, but i was arguing with them that i couldnt watch them and the road. I mentioned to my husba d over dinnee. I did go to work Wedneaday. I called indue to up with diarrhea all night. !y husband saidn, no , remembebr you had another bad headlache. I dont remember. Thursday back at work ,Im an RN, I had long patches missing of my day,kept feeling like I was in a 70s tv. show and went to leave and my car was moved. I said who mocved my car, coworkers all said I did. I told them I didnt take a got worse....i f eel sane at the moment may husbamd took me for the 2nd MRI Friday. I got my test result but my MO was on vacation.Now I need to find a neuro surgeon who specializes in oncology.

Dx 5/24/2017, LCIS/DCIS/IDC, Right, 1cm, Stage IIIB, Grade 3, 1/21 nodes, ER+/PR+, HER2- Surgery 5/30/2017 Lymph node removal: Underarm/Axillary
Log in to post a reply

Sep 8, 2020 08:21PM - edited Sep 8, 2020 08:21PM by Krista21

I was diagnosed when I was 31 ILC had lumpectomy and radiation no chemo, feel free to pm me if you want🙂

Dx 9/23/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Sep 26, 2020 08:12PM esjay20 wrote:

I was just diagnosed with ILC on Thursday this week. Going through the motions of understanding what it all means and the reality of what is ahead of me. Now that I know it's there I just want to cut both my boobs off with a knife :) Anxious wait until I can see my doctor tomorrow, I feel very anxious about understanding more what stage they caught it in. I have a feeling it's all through me and we caught it late. I feel sick with worry. Anyone with advice?

Log in to post a reply

Sep 27, 2020 05:57AM - edited Sep 27, 2020 06:05AM by Moderators

Oh esjay20, we so understand where you are coming from! Waiting and not knowing is the most difficult part. Advice would be to try to keep yourself busy in the interim with things that you enjoy doing and provide distraction. Once you know what you're dealing with, and can make decisions, it will get easier.

We're all here for you!


To send a Private Message to the Mods:
Log in to post a reply

Sep 27, 2020 10:34PM OnTarget wrote:

esjay20- we all go through that same terrible anxiety. It is impossible to concentrate and you worry constantly. No one moves fast enough and they don't seem to care that we want it GONE NOW! Luckily the surgery date finally arrives (1-2 months later), and you can breathe a sigh of relief!

Many if us feel like it is everywhere. My worry was that it wasn't everywhere yet, but that ever day if delay could be the day when the cancer cells venture out! Statistically it is not likely, but that doesn't make it less of a worry.

I hope you get great news and don't feel shy to ask for some meds for anxiety.

Katiefar- I was diagnosed with ILC at 42 (both boobs) last year. I'm doing great after BMX and chrmo. My friend was diagnosed Dec 2019 with metastatic ILC at age 40. After treatment, she is amazingly NED!

I wish I had brilliant insights to share. I had an oncotype of 16, and I chose chemo because my Ki67 was 40 and my tumor was larger and because of my age. While chemo is "less effective" on lobular it isn't ineffective and mine was a bit faster growing which helps chemo work better. My largest tumor was a palatable mass which is not typical for lobular, so I figure you never know, and I'd rather be more aggressive.

I am also doing an AI and Letrazole. Some of the SEs suck, but it makes me happy to know I'm doing my best.

I wish you the best in your journey. The first months are the hardest, the rest was much easier for me. I'm a year and a half out and I feel great! I feel like I'm putting cancer behind me more every day.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/14/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/29/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 5/31/2021 Reconstruction (right): Tissue expander placement
Log in to post a reply

Oct 10, 2020 12:56AM - edited Oct 11, 2020 07:30PM by MikaMika

I was diagnosed in August 2019. I was 38 at that time. Had BMX, rads, now on Lupron+AI.

My MO is a general oncologist, not with ILC specialization. I don't think there are many oncologists who has this specialization. I heard about Dr. Otto Metzger. He is a medical oncologist and ILC resercher. You can try to ask his second opinion about the suggested treatment.

Dx at 38 Dx 8/2019, ILC, Stage IIA, Grade 2, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Radiation Therapy

Page 1 of 1 (12 results)