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Topic: Recently Diagnosed with ILC and Frightened

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

Posted on: Jul 19, 2020 08:03PM - edited Jul 19, 2020 08:05PM by MsLivvy

MsLivvy wrote:

After my recent mammogram I was called back and requested to come in for sonogram and biopsy of my left breast. On July 6 I received word that the the biopsy came back positive. I met with the surgeon who said I have ILC ER+ PR+. I am not yet sure what is my HER2 status or anything much more about the technical terminology surrounding my cancer. The surgeon told me the radiologist measured the area at around 1.75cm behind my left nipple. She said that was an estimate. She said my lymph nodes looked normal on the sonogram and felt normal to physical exam. But that they would do a sentinel node biopsy as part of my upcoming surgery and be able to give me a precise stage after that.

Last week I had an MRI done on both breasts. On Friday afternoon she emailed me to say my right breast and lymph nodes looked clear. She didn't mention in her email about the MRI images on the left side. I am afraid to ask because what if the extent of the cancer looks worse. I am having trouble wanting to know or ask these things because of all the anxiety I am experiencing. If the cancer were in the lymph nodes would they light up in the MRI? Does the MRI make the cancer light up? They injected something intravenously during the MRI.

At the initial consult (before the MRI) she told me she thought I was early stage but could not give me a precise stage until after the surgery which is on Aug 3. I am going to lose my mind waiting so long but that was as soon as they could do it.

I am leaning towards bilateral mastectomy with reconstruction because I have dense, lumpy breasts. ... lots of little benign cysts and calcifications. They are very tricky for me to self examine and also tricky for the doctors and now I have a cancer that is also tricky to detect on a mammogram. I think the cancer was there for quite some time in fact. I had noticed a hard spot several months ago with my fingers but I discounted it as nothing.Sad

I had been on HRT (estrogen & progesterone) for at least 8 years prior to the diagnosis. I got on it to help with menopause symptoms. As soon as I found out I had cancer, I stopped cold turkey. My breasts lost some plumpness as a result which I'm fine with but now I really regret doing the HRT.

Questions:

Several months ago I started feeling fatigued and sleeping/napping during the day. Is it possible that was because of the cancer? It seemed like something was different/wrong.

Since the biopsy, my left breast has been painful.Did others experience that?

Thanks



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Jul 19, 2020 09:39PM trinigirl50 wrote:

Hi

Sorry you are joining us here. To answer: my biopsied area was painful for ages (right up to my mastectomy). I also felt tired during the day for about a month before my diagnosis. I did HRT and my breast blew up like a balloon immediately. I think ILC is connected to HRT.

Good luck with your treatment.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Jul 19, 2020 10:28PM LillyIsHere wrote:

In the end of this month it will be 1 year of my diagnose. To answer your questions, I wasn't sleepy at all. I was working long hours. Last July I was in a trip in Europe, non stop with activities and I didn't feel tired or sleepy. Biopsy and MRI showed 1 location of ILC on my left breast. Since the biopsy I had a large hematoma on the biopsy site and of course it was painful. Also, I start developing some weird pains but I think it may have been psychological since nothing was found on these locations. I never used HRT, I was pre-menopausal and I was someone who only took a supplement here and there but no other medications or so on. I do feel I naturally had high levels of estrogen. My breast was very dense and even though MRI did find only left breast site of ILC, I decided to have BMX. Biopsy after mastectomies showed the right breast had LCIS, left side had 2 sites of ILC and 2 lymph nodes positive. Everything was small but once it goes to the lymph nodes, I belong to another category. I asked MO and she said it may have started 2 years earlier. Yes, I had a very stressful event that happened at that time and I do believe it triggered cancer.

After surgery and pathology info, get few opinions regarding treatments. ER+ has treatments and you will be fine once the heavy wave of surgery is over. In my case the breast reconstruction was more painful than BMX.

Good luck!

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 11/30/2019 Femara (letrozole)
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Jul 19, 2020 11:06PM AliceBastable wrote:

I felt better in the last year before my diagnosis than I'd felt in a long time. I had no trauma, unless you count a large bruise almost 40 years ago on the other side of the same breast. 🙄 I had an extremely thorough hysterectomy 10 years previously and never took any HRT, nor had I used birth control. Stop trying to find causes. Shit happens and you can make yourself nuts trying to guess why. Park your imagination, deal with whatever facts your medical team gives you, and in the meantime, find fun things to do: watching goofy movies, going on picnics, whatever appeals to you.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jul 20, 2020 05:31AM dtad wrote:

Mslivvy....so sorry you find yourself here. You are now going through the worst part of this journey. Not knowing the facts is very stressful! I promise you will feel better once you know exactly what's going on. Unfortunately that will only be post surgery. I had ILC and IDC. The ILC only showed up on a pre op MRI for the IDC. I decided to get a BMX due to difficulty in screening. I had direct to implant reconstruction so I only had one surgery. For several reasons I decided not to take anti hormone therapy. Although I'm not advocating that for anyone else. I just passed my 5 year mark and dong well. I also was on HRT for about 7 years before my diagnosis. I'm sure it contributed to it. Good luck and keep us posted. We are all here for you.

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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Jul 20, 2020 06:45AM cyathea wrote:

MsLivvy, I’m sorry you have ILC. The fatigue you felt could have been due to the ILC, but as you have seen from the responses, not everyone had that symptom. I was tired a lot before my diagnosis, but I was working a lot and didn’t think anything of it. In hindsight, I also remember that my right breast had been itchy, but it wasn’t constant or severe enough for me to think it was anything more than just some irritation from wearing a bra. As they say, hindsight is 20/20, and if I knew then what I know now I would have immediately insisted on an MRI. But I don’t dwell on what could have been, I’m just focused on today.

I’ve had 6 biopsies, 2 prior to BC. The first one was done by a resident. It must have been his first time because he had a lot of difficulty getting the needle in the right place and eventually the supervising doctor took over. With so much jabbing internally, that one hurt for several weeks and I had a nice bruise. The biopsy of my lymph node as hurt more than the others. I don’t think that the fact that you have residual pain in your breast has any bearing on your prognosis.

MRI is the best tool for identifying and measuring ILC. My ILC was never visible on mammogram (tomosynthesis/3D digital) and it was missed by ultrasound for 2 years. It is not uncommon for the ultrasound measurement to be wrong compared to MRI and surgery. The MRI with contrast does help to highlight where the cancer is located.

Surgery is obviously definitive. There are lots of pros and cons for what type you do that you can read about on this forum. Whatever you decide, just know that we are here to support you.

Whether or not you are HER2+, will likely determine your course of treatment with your oncologist.

Hang in there! The waiting is hard. The uncertainty is hard. I hope you are early stage. If you are, I hope you are like my mother who lived 30 years before a recurrence and is still doing well 3 years after the recurrence. If you are a later stage like me, take comfort that the treatments are much more effective now and you CAN live well despite having cancer

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jul 20, 2020 09:34AM MsLivvy wrote:

Thanks cyathea, what is meant by "recurrence"? does that mean a new breast tumor? or does it mean recurrence elsewhere in the body?

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Jul 20, 2020 08:18PM cyathea wrote:

Recurrence (having another tumor after the initial treatment) can happen in the breast orelsewhere in the body. My mother had ductal carcinoma in one breast and had a single mastectomy and chemo. Then, 30 years later she had lobular and ductal carcinoma in her other breast. She opted for another mastectomy. During surgery, they found more cancer than was shown on her images, so it was very fortunate that she had the mastectomy. She didn’t have to do radiation or chemo since they caught the cancer at an early stage, but she does take an AI (Anastrasole).

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jul 22, 2020 08:54AM - edited Jul 22, 2020 08:56AM by claireinaz

ILC's characteristics tend to be multi-focal (in both breasts) and hide from scans like mammos, so you are right to consider a bi-lat MX. With dense breasts (I had them too) it's even harder to find any problems. I still mourn the loss of sensation from my own BMX surgery, but I know I did the right thing.

A bit of good information-ILC has a bit higher tendency to grow more slowly than IDC. And is usually very ER+ so that it responds well to hormone therapy. You'll make it through and be okay, but I felt sheer terror for a while, and that's okay too. Part of being human is to try to figure out why things happen, but with BC-we just don't really have quantitative answers for it all. Eventually you'll adjust to not knowing exactly why you, as an individual, wound up with your dx.

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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Jul 22, 2020 09:51AM LillyIsHere wrote:

Claire, such a great and accurate post. I truly believe ILC is so different from IDC and BMX should be recommended.

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 11/30/2019 Femara (letrozole)
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Sep 7, 2020 07:57PM MsLivvy wrote:

Hi Friends, I wanted to update everyone ... I opted for BMX which happened on August 3rd. My recovery is going great. My pathology was stage 1A. However, I had 3 additional tumors in the left breast that were not seen on mammogram or MRI. They were scattered in different quadrants. My largest tumor was 1.2cm, then 7mm, 2mm and 1mm. My lymph nodes were clean (4 were taken) except one had ITCs. I also had "in situ" cancer in the supposed "clean" right breast as well as a lot of "in situ" cancer in the left breast. My surgeon commented afterward she was glad I chose BMX.

My oncotype score is 24 and 2 oncologists (I got a second opinion) both felt I should skip chemo and just do the hormone blockers.

I am 59 and post menopause and would prefer to be on one of the AIs but they have me on Tamoxifen because I have osteoporosis. My plan is to get treatment with bisphosphonates, take supplements (Bone Up) and get into a weight training program to see if I can improve my bone density to be able to switch to an AI drug.

Thanks for all of your kindness and comments. I was a complete newbie when I originally posted. Now I practically have a PhD in this stuff!



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Sep 7, 2020 09:09PM LillyIsHere wrote:

Thank you for the update MsLivvy. Congratulations for removing all bad stuff and I wish you a fast recovery. AI are considered better than tamoxifen when it comes to ILC however, this is your decision. Having clear nodes is a wonderful news!


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 11/30/2019 Femara (letrozole)

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