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Topic: New here and pretty scared

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

Posted on: Oct 12, 2020 07:56PM

BeachyGrl wrote:

Hi all, just got my biopsy results back from a lump and an enlarged node, both positive for ILC. They can see more enlarged nodes but that will have to wait. I am Estrogen and Progesterone receptor positive and HER2 negative.

The even more scary thing is that I have had weird eye flashes and floaters that are rapidly getting worse (my eye doc saw no issues with retina), and a weird leg pain recently, so worried about spread there. Obviously I have more nodes involved. Seems like lobular is a worse prognosis?

Any info or encouragement would be appreciated

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Oct 13, 2020 12:47PM - edited Oct 13, 2020 12:57PM by ShetlandPony

Bumping for BeachyGrl. Any other ILC people (or IDC people) who can share? She could use your support during this diagnostic process.

(I answered her in the stage iv forum, but explained that since we certainly do not know she is stage iv, this would be a better place to discuss.)

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Oct 13, 2020 01:08PM Hannah1962 wrote:

Hi BeachyGirl,

I have ILC, and I want to reassure you that I had strange manifestations in lungs and elsewhere that went away after my lumpectomy. I was unwell for a couple years, for example experiencing repeated shingles and developing mild neuropathy in my legs (weird leg pain). My lungs looked bad on CT scan, full of "ground glass opacities." All of it cleared after my surgery and even before I went on the hormone blockers. I think my immune system was going nuts due to the cancer. There is autoimmunity in my family and I have sarcoidosis. My sarcoidosis flared like crazy with my cancer.

I only had one node checked, it was supposedly negative, but I've been told there's a high "miss" rate when nodes are checked (not sure if that is true or not).

I think what is most important is ILC is VERY responsive to the hormone blockers, especially AI drugs. I am on Femara, and I make the effort to swim several times a week, which prevents me from getting joint pain from the medicine (I notice knee pain when I don't make it to the pool frequently enough). I've also switched to green tea (I used to drink lots of black tea). I have read the green tea is better than black for preventing cancer recurrence (who knows if that is true, but the green tea is fine).


I have some regrets I did not get the BMX (I had such extensive LCIS in addition to the ILC that was removed). However, I am happy to report I am feeling very well, better than I did for the several years before my cancer diagnosis. Leg pain - gone! Shingles, no more! Energy - improved!

There could be plenty of explanations for your symptoms OTHER than that cancer has spread to those places.

Take care of yourself, and please keep us posted.

Hannah

Dx 12/7/2018, ILC, Left, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Oct 13, 2020 01:43PM LillyIsHere wrote:

Beachygirl, I am another ILC member in here. I understand how scary this is until you have a treatment plan in order. Then, there is a black cloud that usually lasts the first year, then you get used to and discover the "new" you. The good news is that ILC is a lazy cancer and takes years to spread. Second, as Hanhah mentioned, it is responsive to anti-hormone therapies. So, there is a medication for this type of cancer. The bad news is once you are diagnosed with cancer, you worry about every ache and pain you didn't have before that can be wear and tear from living life :). I go to Dana-Farber and will be happy to give you some more info if you are interested. You can send me a message if you prefer.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Oct 13, 2020 01:44PM - edited Oct 13, 2020 01:46PM by ShetlandPony

As far as where to go, the top-level (NCCN) cancer centers in Florida are Mayo Clinic in Jacksonville and Moffitt in Tampa. A good second choice (NCI) would be University of Miami Miller School of Medicine Cancer Center. If these are too far for treatment, an option is to use them for getting the diagnosis completed and a treatment plan to implement locally.

ILC patients should have a breast MRI before surgery to catch any additional tumors or involved nodes. Breast MRI is the most sensitive imaging for ILC.

The oncologist can order an MRI to look at the orbit (eye), and a CT with contrast to look at bones. (For lobular this may be better than PET or nuclear bone scan.)

A good source for info on ILC is

https://lobularbreastcancer.org/


2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Oct 13, 2020 02:46PM - edited Oct 13, 2020 03:20PM by LillyIsHere

Shetland Pony is a wealth of information about ILC. SP, do you know anyone who had ILC in the eye? I read it is one of the places that can go. Ay!

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Oct 13, 2020 03:52PM - edited Oct 14, 2020 11:55AM by KBL

BeachyGrl, I have Stage IV ILC that was a missed diagnosis for six years with no treatment whatsoever and have been on treatment since June of 2019 when it was found in my stomach. The original place it was not found until this year was my entire spine. Long story, which I've posted about before.

As others have said, the diagnostic journey is extremely hard.

There is also MD Anderson in Jacksonville, if I'm not mistaken.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Oct 14, 2020 10:02AM BeachyGrl wrote:

I just want to thank everyone for the responses, it's so helpful to have some connection. I am looking at getting into Dana Farber as my husband has an office he could work from about 45 minutes away. It's going to be travel no matter what. I am having a hard time getting through to anyone but reception or getting them to call me back, but I'm sure I'm a little impatient what with the visible nodes, the eye, and some other really weird stuff that going on. I'd really like to see if treatment can help me or not. Sometimes I'm feeling like maybe I can fight and sometimes I start to feel hopeless. I'm guessing this can be normal.

ShetlandPony, thanks for the info on locations and scans. I can see you are a resident expert. :-)

KBL, I've seen some of what you've posted about your journey. Must be a crazy ride. Where are you being treated?

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Oct 14, 2020 10:22AM claireinaz wrote:

Hi there, luckily ILC is somewhat (according to research) slower moving than other subtypes of BC, and being hormone + is a good thing because you can take aromatase inhibitors for it. Often it doesn't respond quite as well to chemo, but there is no reason not to go through with that if your oncologist recommends. Because of my node status, my MO did--and I wanted it, actually, since I wanted to throw everything else at it the first time round. I knew I could handle it--and I did.

ILC has a higher tendency to be multi-focal (found in both breasts), and harder to detect on mammograms and in dense breasts because of the way it grows -- flat and not obviously a problem in tissue. That is why I opted to get a BMX in 2013.

Hugs,

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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Oct 14, 2020 11:55AM KBL wrote:

BeachyGrl, I sent you a private message.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Oct 14, 2020 08:17PM beach2beach wrote:

Hi Beachygrl,

I had pains before ILC and still do after. Unfortunately, the pains bring on the "what if's" . We tend to pay even more attention to every itch, throb and sensation. I try to follow the rule that if it doesn't clear up in two weeks, get it checked out.

I don't think Lobular is a worse prognosis. Just different. Slower growing and sneaky in the way it grows. Compared to IDC, and please someone correct me if I'm wrong, ILC, if it does recur, tends to be later on down the road in many cases. Where it can show up also varies from IDC. I tend to believe that more and more is being researched on it and treatments/options get better and better. We have to hold onto that.

As for eye flashes and floaters, my co-worker just went through the same issue, without having breast cancer. She was getting flashes when she was in darkness. Like going out at night. Floaters all day. No issue with her retina, but her dr. gave her some type of drops she has to use. Just trying to say,,it could be a totally separate issue.

Hang in there, and please keep us updated.

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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Oct 15, 2020 10:54AM claireinaz wrote:

Beach2Beach is right--ILC tends to recur later rather than earlier, like IDC, which makes our dxes terrifying in themselves.

However, we have to trust that (if we are taking an AI) it is working, and get regular follow ups with our MOs, live as healthy a lifestyle as we can, etc. I have ongoing, early onset (teens) generalized anxiety disorder, as well as cancer-related PTSD, and am now suffering from episodic vertigo (it's often brought on by stress, and this is without a doubt a stressful time for so many of us). I also tend to become very anxious about a month before each check up and lab work. My friend, who has lived through two stage IV ovarian cancer dxes in the past decade, said we live six months at a time. I agreed with her completely.

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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Oct 16, 2020 06:18PM beach2beach wrote:

Absolutely 6 months... to 6 months : (

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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Oct 18, 2020 10:41AM Sabbymama wrote:

Hi Beachygrl,

I was diagnosed with ILC and a positive node back in March, but had a second round of biopsies done after my MRI showed additional areas of concern and that pathology was inconclusive and they called it IDC. My MO says I have IDC, DCIS, with a "lobular component"?? Whatever that means? Anyway, we knew immediately that I had at least one positive node and the CT scan showed potentially more, so when they performed my mammogram, they took all level 1 axillary lymph nodes as well. Prior to my surgery, the MO ordered CT with contrast and a nuclear bone scan to look for any metastatic signs, thankfully they were mostly clear (some enlarged supraclaviclar nodes and a couple "bone islands" are being watched). I had a low Oncotype score, but given my age and the 4 positive lymph nodes, my MO recommended 4 rounds of TC chemo and I also completed 15 rounds of accelerated radiation treatments. I just started ten years of hormonal therapy with anastrozole. The biggest concern for my MO regarding the "lobular component" is a fear of a new cancer in the opposite breast. She said that we will need to monitor the right breast closely as lobular cancer seems to be mirrored on the other side and harder to detect. I wish I had the opportunity to do a double mastectomy so that I didn't have to worry about every ache and pain, but with COVID it was considered "elective" and as there was no evidence of disease, it was not allowed. Just had a mammogram on Friday and things looked good!

The summer before my BC diagnosis, my eye doctor discovered a "chorodial nevus" in my left eye and once I learned I had cancer, I panicked worrying that it was indeed cancer too. A visit to the ophthalmologist ruled out cancer, but nevertheless, I am always worried about it. I did suffer from episcleritis (an inflmammation of the eye) and was treated with steroids for a month during my chemotherapy. There have definitely changes to my vision in the last year, so plenty of reasons to worry, but the ophthalmologist seemed very confident that I shouldn't need to. Trust your eye doc and don't let it panic you ;).

You are quite lucky that your cancer is ER/PR+2 HER- as that means you have many effective treatment options available and a better prognosis! Chemo is probably in your future, and it is tough, but you can do it and there are wonderful ladies here to support you. It's natural to worry that every new pain or strain is a possible spread, but having a little faith and taking things one day at a time is all we can do. My therapist said to me that the only thing we can control is our positive attitude and that is definitely one thing that I won't let cancer steal from me! You got this!

Cheers,

Sabrina

Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/13/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/11/2020 Arimidex (anastrozole)
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Oct 19, 2020 06:14PM FaithAndTrust wrote:

hi beachy..i echo everything you have been told here..only thing to add is as far as i know lobular is not any worse than ductal and because it is lazier it may even be better than ductal..so please don't worry about it having a worse prognosis.

also I had CHEMO and a great response so don't discount value of CHEMO for lobular.


Sabrina please be aware that mammogram only is not sufficient when looking for lobular in other breast. Breast mri or at least ultra sound required also.



Dx 11/2014, ILC, Left, 1cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Chemotherapy

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