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Topic: I am scared just diagnosed

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

Posted on: May 21, 2021 09:38AM - edited May 21, 2021 09:51AM by LoverofJesus

LoverofJesus wrote:

Hi everyone, I was just diagnosed with ILC! I'm so scared!

The breast surgeon said I am likely facing chemo just because of the size of it by feeling. I see the oncologist on Monday.

The surgeon said he thinks they will do chemo before surgery to shrink it first before surgery. My head is spinning and I am scared.

I have a 14 yr, and an 18 yr old still at home and a 23 year old and some grandchildren I want to live for. I just noticed pain in my neck/shoulder. Ugh I hope it has not spread. I don't even know what questions to ask right now. I'll be having an MRI next week too. I want to know all about stages has anyone on here stated with stage 4?

Please please anything you can tell me to ask or so will be helpful.

Dx 5/22/2021, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 6/16/2021 AC + T (Taxol)
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May 21, 2021 10:03AM Moderators wrote:

LoverofJesus,

We're so very sorry to hear of this development -- you have been here and worrying for quite a while, and we're sorry it's now officially a cancer diagnosis. However, we're so glad you've found us and have continued to keep us posted on your situation. You already know this community is an amazing source of advice, information, encouragement and support -- we're all here for you!

We know it's hard to not jump to conclusions, but try to take a deep breath and remain calm while your treatment team comes up with a plan. In the meantime, this page from the main Breastcancer.org site on Questions to Ask Your Doctor About Your Diagnosis is a good place to start. There's also a helpful section on ILC that you might find informative.

Again, we're so sorry this is how your concerns have ended up, but you can do this!

Sending big hugs,

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 21, 2021 10:32AM LoverofJesus wrote:

I hope someone will answer me and give me advice too. Thank you to the Mods for replying.

I am pretty scared as I guess all of you can relate when you’re first told. I just feel so sad. Sad for me, sad for my family. Just sad.

Dx 5/22/2021, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 6/16/2021 AC + T (Taxol)
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May 21, 2021 10:39AM ctmbsikia wrote:

Lover, I too am sorry about your diagnosis. What you are writing is a little troubling though. A BS is not the Dr. that dictates your treatment, at least not in the US if that's where you are. You also need the pathology of your biopsy. What type is it? Hormone positive/negative, and is there a Her2? These factors are mainly what dictates having chemo before surgery---not just size, although sometimes they do try and shrink a tumor before surgery. Again, the MO is the doc ordering the chemo. not the surgeon. I wish they would have told you that. That probably won't happen until after your MRI. which will better determine size. Again, I'm sorry, but don't get too far ahead of yourself. This is the hardest part, we are here to help you take it all in.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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May 21, 2021 11:47AM Jetcat wrote:

I don’t know anything about ILC but you have every reason to believe thatyou will be around fo a very long time. Treatments have been the easiest part of my BC experience and you will have a plan soon. Wishing you all the strength you need to get well.

Hopeful Dx 2017, DCIS, Left, Stage 0, Grade 3, ER+/PR+ Dx 2019, DCIS, Left, Stage 0, Grade 3, ER-/PR-, HER2- Surgery Mastectomy Radiation Therapy Surgery Lumpectomy
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May 21, 2021 12:31PM LoverofJesus wrote:

I do know the MO will do al of the chemo stuff etc. I think the surgeon was just giving me his opinion on what he thinks will happen moving forward.

I appreciate anything any of you have on ILC since this has likely been there for over a year now since the mammogram didn’t pick it up last year.


Dx 5/22/2021, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 6/16/2021 AC + T (Taxol)
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May 21, 2021 05:03PM wallycat wrote:

I am sorry you are joining us.

If all you have had is a biopsy, then there is zero chance of knowing anything except the type of cancer you have. Doctors cannot "feel" how much cancer there is. Frankly, I was told MRIs are 99.9% accurate and they were wrong in my case. So take a deep breath.

Find a doctor/team you trust and then trust them. OncotypeDX testing can help guide you with whether you need chemo or not. You'll need to know if your nodes were involved, the mitotic score, the Ki score, and a host of other things...and your age.

Feel free to post here to ask questions. Make a list of questions for your doctors.

Best to you.


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
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May 21, 2021 06:25PM - edited May 21, 2021 06:30PM by pudelpointer

LoverofJesus,

Sorry you are here. I was just diagnosed with ILC on the 14th of May. Although if I am honest, I knew I had cancer on the 7th based on the conversations with the Radiologist and Ultrasound tech. The Biopsy on 10th didn't give me any comfort based on the conversations they had with me as well as introducing me to the nurse navigator that day.

I had known something was wrong for over a year, I went to breast specialists, my regular doctor, more mammograms/ultrasounds and everyone told me sometimes nipples just invert as they didn't see anything on any images. Now I have over a 6cm tumor and who knows what else. I am so angry with myself for not pushing harder. Needless to say, none of those doctors are treating me now.

My diagnosis so far is ILC ER +, PR+, HER2-. My Ki67 score is between 5 and 10%, it is preliminary Grade 2. I also have Neurofibromatosis Type 1. I had an MRI today and they said I should know more Monday. I meet with the breast surgeon on Thursday of next week, although the nurse navigator gave me a heads up my BS may refer me to the MO and discuss me having chemo before surgery so I need a MO in mind, which I have picked, so I can be scheduled if that is the route she thinks she needs to get clear margins.

Looks like we will be going through this journey over a similar timeframe. I am nervous and scared too. I have a husband that I adore and an 9 year old son that is everything to me. The uncertainty is crazy.

But we have got this!! Positive thoughts and good vibes sent to the universe for you!!



41 at diagnosis. Neurofibromatosis Type 1 (Diagnosed at 5 years old). MammaPrint: Low-Risk Dx 5/14/2021, ILC, Left, 6cm+, Stage IIIA, Grade 1, 4/14 nodes, ER+/PR+, HER2- Surgery 6/21/2021 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 7/12/2021 Lymph node removal: Underarm/Axillary Chemotherapy 8/9/2021 AC + T (Taxol)
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May 22, 2021 06:13AM - edited May 22, 2021 06:38AM by LoverofJesus

This Post was deleted by LoverofJesus.
Dx 5/22/2021, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 6/16/2021 AC + T (Taxol)
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May 22, 2021 06:52AM exbrnxgrl wrote:

LOJ,

I understand being scared. All of us have been there. What did I do to get through the early days? I focused on reality and what I knew at the moment. I rarely let myself drift into the “What if...” mode as that was pointless and would have only created anxiety. Most importantly I decided not to waste my time worrying about what I had no control over. After all, if I was worried about cancer shortening my life why would I fill my days with over the top anxiety?

Many of us, myself included, have found that taking meds (anti-depressants or anti-anxiety) and some therapy can be very helpful. Your user name indicates that you are a religious person. I don’t know the particulars of your religion but is support and help available through your religious connections? Please seek some help and support so you can enjoy life now and not waste it worrying about a future you can’t control. It’s ok to be sad, mad, etc., but you will need to pull up your big girl panties at some point so you can be an informed active participant in your tx. Take care

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)
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May 26, 2021 09:01AM claireinaz wrote:

I avoided doom-scrolling or Dr. Googling anything, though it was hard. I learned how to read scientific journal articles and I learned to check research dates--there is some really old outdated research out there, that has since proved to be wrong. I came here, and stayed here, and found out that ILC has a tendency to grow more slowly than IDC, and responds really, really well to anti-hormonal medication. I talked to members about chemo and got a lot of really great tips to avoid side effects. I looked at the Nurse's Study about exercising 3-5 hours a week and how that really keeps us from recurrence. I continued to eat "clean", and kept talking to everyone here, particularly ILCers. I found that sharing I needed some hope in my posts kept out all the negative stories that members sometimes seem to want to share. You'll make it through this--it's just a bump (a rather large one, but a bump) in the road of your long life. You'll be okay.

Hugs,

Claire

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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May 26, 2021 09:04AM claireinaz wrote:

I might say one more thing. It's right that you are sad. You are grieving for the life you thought you would have, and having to let that go and make room for this temporary "new" side road you have to take. Grieving is necessary and will actually help you--it's healthy. So feel sad, angry if you have to (it's the active part of fear, which is also normal and human!), and then get proactive in kicking this disease out of your body forever.

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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