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Topic: Just diagnosed ILC

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

Posted on: Apr 8, 2021 10:40AM

SaraJay wrote:

Hi, I'm 39 years ago and just diagnosed. So far, I know I'm ER and PR positive and waiting for HER2 results. All I have so far is my pathology report from the biopsy (attached) and yesterday I met with the breast surgeon and had blood work and a CT scan. Today I go back for a bone scan. These scans are freaking me out and between the diagnosis mammogram and ultrasound, biopsies and diagnosis, it's been a month full of anxiety and fear. I'm also going to order the genetic testing, but think at this point I'll opt for double mastectomy anyway. I have a 12 year daughter and want to know for her. I briefly read over some old posts from members here about ILC and started to get scared. There seemed to be a common theme of recurrence and Mets with ILC.

I don't know too much about ILC and am trying to keep myself off Google because that never really helps. I'm reaching out to here from others with similar diagnosis! Thanks!

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Apr 8, 2021 11:47AM DutchieGirl wrote:

SaraJay, initially things will feel very overwhelming, which is exhausting and does a number on our mental health. My mom was diagnosed with ILC in 1998 at the age of 58. Her tumour was over 7 cm and she had 13 positive lymph nodes. She was Stage 3C by the time she was diagnosed. She had a bilateral mastectomy, as she had read that ILC has more of a tendency to be bilateral. I'm happy to say that she is alive and well, and just turned 80 years old last summer. She has never had a reoccurrence or metastisis. I truly wish you all the best. You can do this!

Lori-Anne Dx 11/7/2018, IDC, Left, 1cm, Stage IIIA, ER-/PR-, HER2+ Surgery 1/13/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 3/3/2019 AC + T (Taxol) Radiation Therapy 7/28/2019 Targeted Therapy Herceptin (trastuzumab)
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Apr 8, 2021 02:24PM SaraJay wrote:

DutchieGirl: thank you for sharing your mom's success story.

I'm struggling with grasping all of this. It sure hits you out of nowhere and shakes up everything. I'm trying to look at it as a "detour" in my life.

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Apr 8, 2021 03:46PM Dani444 wrote:

SaraJay, I am sorry you need to be here, it just plain sucks. You will find so many knowledgeable and supportive folks on here. I learned so much about my cancer from these forums. As Dutchiegirl said the beginning is so overwhelming. It does start to feel a bit more manageable when you get a treatment plan in place. For me I definitely had days where I felt empowered and also plenty of days where I just wanted to binge watch Netflix and eat all the comfort foods. Please feel free to ask any questions you have, or if you just need to vent post away! We are here for you.

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 Surgery 4/19/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 8, 2021 04:01PM ELW412 wrote:

Hi SaraJay. I know how scary it can be to learn of this diagnosis. I thought breast cancer was the LAST thing I had to worry about and then, out of the blue, I found out just last fall that I have ILC. I am still on this journey, (just had a bilateral mastectomy and am now on my second round of chemo) and am learning that everyone's experience is different...from handling the initial shock to dealing with all the decisions to be made to working through reactions to treatment. I do know that having a loving and supportive community of family, friends, and others living with breast cancer is invaluable. However, try not to assume that whatever you read about someone else's experience will necessarily apply to you. Not diagnosis, treatment, or outcomes. Make sure you trust and like your medical team. Ask lots and lots of questions. If you do read anything on the internet, be sure it is on sites like this one or reputable medical journals that will give you concrete and scientific info.

Hang in there. All best wishes! You will get through this!

Dx 9/14/2020, DCIS/ILC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 10/9/2020 Carboplatin (Paraplatin), Taxol (paclitaxel), Taxotere (docetaxel) Surgery 3/10/2021 Mastectomy: Left, Right Targeted Therapy 4/6/2021 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy Femara (letrozole)
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Apr 8, 2021 04:02PM SaraJay wrote:

I read that ILC only accounts for 10% of breast cancer diagnosis. This shocked me. I guess my fear is that it may not be as researched because of this? Anxiety is pretty bad after my bone scan today.

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Apr 8, 2021 04:43PM abigailj wrote:

Hi Sarajay - so sorry you find yourself here but please know that you will find great information and a very supportive community. I knew very little when I was first diagnosed (ILC in one breast and IDC in another...yay) and was so overwhelmed but once you have the full information on hormone positive / negative status and other testing is done and work through a treatment plan with your medical team I know you will start to feel a little more in control of the situation and you will be able to move forward in getting the cancer under control and hopefully out of your life. Hoping you are able to get treatment at a good hospital nearby and connect with an experienced medical team thatyou have trust in confidence in - that is key. And please make sure to search this site for more info once treatment plans are proposed to you. Best wishes and gentle hugs.


Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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Apr 8, 2021 04:49PM DutchieGirl wrote:

SaraJay, it all kinda sucks. I'm now 2.5 years post diagnosis and I'm feeling pretty good. Even though my mom had breast cancer (as well as her two sisters), I was still blindsided by MY diagnosis. It was a dark year for me, but I'm really getting beyond it now...and so will you. Hugs to you as you go through this journey!

Lori-Anne Dx 11/7/2018, IDC, Left, 1cm, Stage IIIA, ER-/PR-, HER2+ Surgery 1/13/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 3/3/2019 AC + T (Taxol) Radiation Therapy 7/28/2019 Targeted Therapy Herceptin (trastuzumab)
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Apr 8, 2021 07:46PM saltmarsh wrote:

SaraJay, I'm early in this process, like you, and our kids are about the same age. I find it encouraging that we have the second most common form of breast cancer -- common enough that some docs just specialize in our kind -- so there is lots of data out there on it, and it's not like they have no idea what they are doing.

Wishing you lots of luck and good health!

Dx 3/8/2021. LCIS, ILC. Surgery 4/19/2021 mastectomy, right
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Apr 8, 2021 08:42PM OnTarget wrote:

Hi, it sure is scary at first, but you put one foot in front of the other and before you know it, you're back to normal!

Good luck and try to take a deep breath! I'm glad they are pushing your tests along. Waiting is the worst part!

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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/15/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/30/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 6/1/2021 Reconstruction (right): Tissue expander placement
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Apr 15, 2021 07:56AM SaraJay wrote:

I meet with my oncologist for the first time today. Can't say I'm not very nervous. I'm still experiencing swollen lymph nodes. I guess at least I'll have a doctor to check them out.

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Apr 16, 2021 09:17PM ltrinidad wrote:

Hi SaraJay, I was told today (also) that I have ILC. Getting an MRI on Monday and genetic testing sometime before surgery. I am sorry about your diagnosis, worried too about my son, must stay strong!

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Apr 17, 2021 10:17AM SaraJay wrote:

ltrinidad: I'm so sorry! I totally thought you were in the clear!

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Apr 17, 2021 12:25PM ltrinidad wrote:

I know, SaraJay, so did I! I am so sorry to hear you are suffering. I am here if you need anything. And I will keep you posted.

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May 22, 2021 04:46AM Too-Ticky wrote:

Hi SarahJay. I'm newly diagnosed too (yesterday). I can't offer advice because I'm just start my journey. Bit if you need someone to chat to, or just generally vent about it all, I'm happy to be a virtual pal. Be kind to yourself. I'll be thinking of you.

Dx 5/21/2021, ILC, Right, 6cm+, Grade 2, 1/2 nodes, ER+/PR+, HER2-

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