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Topic: Pathology report back ... what a surprise! Need some advice!

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

Posted on: Jan 5, 2020 10:24AM

kjm90 wrote:

Hi ILCers – I have been reading over these boards for months (I feel like I get so much more info from here than my doctors!), but haven't really felt the need to ask for advice until now.

As you can see, I was diagnosed in May 2019 with IIB lobular cancer. I am a typical story:

  • Was a good girl doing mammograms faithfully on an annual basis with all clears for the 10 years prior to diagnosis. I was told repeatedly that I had dense breasts. OK, yes I am aware - so, now what? Nothing else was ever offered to me to deal with this and I was under the false impression that mammograms could catch BC - WRONG!
  • My husband was actually the one to find the cancer, noticing that my breast was hard (I was never good about doing breast exams).
  • I had just had a hysterectomy in December 2018 with complications prior to my husband noticing the hardness, so had been at the OB/GYN for months prior to my diagnosis. No notice of the breast hardness by him. The hysterectomy, due to Stage IV endometriosis, also removed my ovaries and put me on HRT for a few months before we noticed the cancer. I was upset about losing my ovaries at the time, but in hindsight, thank God that they are out!
  • Found out that the Breast Center Imaging doctor who originally looked at my first US scans after I told my OB/GYN about the hardness couldn't believe later that I had cancer and other doctors who viewed them concurred (long story that I found out from sister).
  • Just had a mastectomy and my final pathology was a shock.

I started at MD Anderson in May and my IIB diagnosis was based on US saying that my tumor (which was originally thought to be two separate tumors) was 5 x 3 cm with no lymph node involvement. Never was offered any other type of screening. I signed up for the PELOPS trial and got put into the Femara wing. I did OK on Femara for the six months of the trial. During the trial, I started a keto diet and began adding various supplements. I knew from reading out here (and my own mounting experiences) that ILC is sneaky f*er and kept asking about a BMX, but was pushed off repeatedly by all of my doctors. I had three US's during the trial and was told during the second one that the tumor had actually shrunk. I had a mastectomy on 12/17 and my sentinel node biopsy came back clear. We were estatic, and I was hoping that I might get away with just surgery and AI's, but then I started reading about others in my December surgery group who had surprises on the pathology report, and began to worry. I got mine back last week and was told that the tumor was 11 x 9 cm (WTF!) and that two lymph nodes had cancer (one with macro and the other with micrometasis). Now, besides radiation coming, I have to go back in for another surgery to clear out the margins and remove more lymph nodes. I assume this all bumps me up to Stage III something (guess I will find out when I talk to my MO). To say I am devastated (and a bit pissed!) is an understatement.

Some questions for you experts out here:

  1. Any of you had a similar experience? If so, were you told to do chemo at this point? Should I want chemo considering the lymph node involvement?
  2. I have seen from reading out here that there are few others with huge tumors, but mine seems pretty darn big. Any words of encouragement on this front?
  3. Should I insist on a mastectomy for the other breast, after clear proof that they cannot see ANYTHING with ultrasounds?
  4. Since I was in the PELOPS trial, I have access to Ibrance for a year. Should I opt for that vs.any possibility of chemo? For those of you who might have done both, which one has the lesser side effects, in your opinion?
  5. Are any of you at MD Anderson? If so, have you been able to get other types of screening besides US, which obviously are pretty useless? My MO mentioned maybe about doing MRI's annually? Do you know if MBI is available there or anywhere around Houston?
  6. Any other thoughts of things I should be asking or doing?

Sorry this is so long. Thanks in advance for any feedback! You guys are keeping me sane at this point!

Dx 5/21/2019, ILC, Left, 6cm+, Stage IIIA, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 12/17/2019 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy Femara (letrozole)
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Jan 5, 2020 12:53PM mac5 wrote:

kjm90 my first BC was treated at MD Anderson. This time I’m at PennState.

Yes I agree ILC is sneaky. I was told first that Chemo would not be effective on ILC and that at Grade 1 my tumor would grow slowly enough that a year of Endocrine Therapy would be good enough. I was scared because my tumor was visibly growing and my chest wall was involved. I pushed for some kind of systemic Chemo to at least feel like I was taking an aggressive approach. So far it’s the right choice for me.

If the MO assigned to you does not do/say things that calm you, insist on another opinion. If MD Anderson gives you ANY flack about it, you can talk to a Patient Care Co Ordinator, the Director of Nursing, Chief of Oncology. Someone will listen and needs to. It’s your body and you can’t fight this if you don’t feel confident in the Protocol chosen for you. IMO. It’s hard enough to fight it when you are convinced you are doing everything possible.

Please don’t give in for less than you want

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, 1/1 nodes, ER+/PR+, HER2- Chemotherapy 11/6/2019 CMF Radiation Therapy 6/5/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 5, 2020 01:10PM Scrafgal wrote:

I don't have ILC but I had an aggressive tumor in terms of grade and cell proliferation. My team at MDA gave me "the works" in terms of diagnostice exams. They gave me their own mammo and several biopsies--not trusting those done by others--a PET/CT scan, bone scan, X-rays etc. I never asked for specific exams. They just told me what they wanted to do, and I agreed. I was treated well there. As the other poster suggested, you can always get a patient advocate to help communicate with doctors, although I never needed one.

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/23/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
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Jan 5, 2020 01:18PM Gracejoy wrote:

I had similar experiences as you. I had a dense breast had regular follow up by mammogram and ultrasound for past 10 years before diagnosis I found out my BC myself by having pain and feeling a mass. I asked my Breast Cancer surgeon to biopsy area that felt hard and this biopsy confirmed that I have Lobular BC.

You and your Medical Oncologist need to decide now what is best option for your case. As my MO says each case is different as molecular biology of each BC is different. He believes in having genetic testing on tumor for Lobular BC to see if patient will benefit from chemotherapy.

Following was my BC journey.

1) Before surgery I had MRI to determine the size of BC. This showed I had locally advanced BC but didn’t show any node involvement.

2) After surgery pathology showed one node is positive and 9X 13 cm tumor

3) My tumor was sent to Oncotype DX analysis to determine whether I am a good candidate for Chemotherapy.

4) After 2 weeks I got Oncotype result saying low risk therefore my MO not recommended to have chemotherapy (even though I had a positive node he was against chemo because it would have 1-2 % benefits and 100% all the side effects.)

5) I started immediately radiotherapy of 30 rounds

6) when radiotherapy was finished I started taking Tamoxifen for 2 years because my MO thought it may add some benefits before switching to AI

7) I have been on Femara since then.

8) I have yearly MRI since diagnosis for other breast

So far so good with my BC journey. I am thankful now for not doing chemotherapy as it prevents recurrence in first five years and I am out of that window. I am also thankful to my BC surgeon not to recommend my normal breast be removed. Because I am having yearly MRI and lobular BC grows very slowly therefore I will have time if something happens to other side.

Wishing you the best

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 5, 2020 01:45PM - edited Jan 5, 2020 01:49PM by M_and_G

Hello Kjm90

Yes I can relate.. This is basically what happened to me. I was the first patient at MD Anderson to sign up and participate in the PELOPS Trial. I just completed my six months of Ibrance/ Letrozole and had surgery in November. To say I was stunned from my pathology report is an understatement. After, four Mammograms, four Ultrasounds, two MRIs, and a CT scan my multicentric IDC, 2 cm tumor with 2 small satellite tumors in reality was a single 5 centimeter tumor. In addition, all the scans represented clear nodes; reality 2 nodes positive. I did have an ALND and two other nodes had ITCs. I am not sure how you were offered a year of Ibrance after surgery because I was told only an additional six months was available but my MO is not sure he wants to go that route and has suggested standard Chemo might be required. I am currently waiting on my MammaPrint results to determine what is next.

On a positive note, only 5 percent of the Cancer in my 5 cm tumor was still alive/active after the Ibrance/Letrozole treatment which from my understanding is a good response with an ER+, Grade 1, KI67-2 tumor.


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Jan 5, 2020 02:07PM Georgia1 wrote:

Kjm90, you are getting good advice here so I'd just add a couple of thoughts - mine was an IDC/ILC mix.

I would push for an MRI of the "good" breast. ILC is indeed sneaky and my surgeon told me the MRI technology is the best to find it in dense breast material. If that turns anything up then you can consider a masectomy on that side. And whether or not chemo would help depends entirely on the genetic makeup of the tumor; please ask your doctor about an Oncotype DX test. And feel free to be pissed! Sometimes that's a good motivator. :)

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 5, 2020 09:37PM MikaMika wrote:


I've noticed that many gals with ILC take Femara, not Arimidex. Is Femara better for ILC?

Dx at 38 Dx 8/2019, ILC, Stage IIA, Grade 2, ER+/PR+, HER2- Radiation Therapy Hormonal Therapy Arimidex (anastrozole)
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Jan 5, 2020 10:56PM - edited Jan 5, 2020 10:59PM by Gracejoy

MikaMika, Arimidex and Femara work the same way. I am not sure why my MO recommended me to take Femara. It is possible that side effects of Femara is less than Aramidex. It's a good question. I have an appointment with my MO in this month and will ask him about it.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 6, 2020 06:28AM - edited Jan 6, 2020 06:29AM by claireinaz

Hi there I'll try to make my long story short.

Yes, I was similar to you. Dense breasts, never told that they can hide cancer. I found the tumor through a random self check after five years of five clear mammos.

Had to demand an u.s because my GP told me (twice) that the lump was just "normal breast tissue"), thank god I listened to my intuition and the advice of my husband and a very good friend. US revealed trouble, so down the rabbit hole I went.

Lumpectomy followed the week after the US.

Pathology report and staging: 2 cm., 6/11 + nodes, Stage II, grade between 1-2, ILC.

Because of + nodes my oncologist said I'd need chemo, so that's what I got. I read a bunch of chemo experiences on these discussion boards and talked to a friend who had chemo and a BMX because of her own BC dx and realized I could do it. She recommended my MO and surgeon too.

After finding out that ILC tends to be multi-focal (found in both breasts) and as we know hides from scans, I made decisions.

I had ACT chemo, and then six weeks of 5 days a week radiation tx.

A year after rads, I had a BMX with immediate reconstruction. I remember my oncologist saying "you don't need to get a BMX since you've had rads and a lumpectomy", which statistically says that survival is the same as no rads and a BMX. HOWEVER, it doesn't address the sneakiness of ILC and tendency to grow for miles without being detected by scans.

I did not want to live my life with the added mistrust of mammos. I had the BMX and the pathology report post-surgery read:

left (bad breast) no involvement, BUT right ("good") breast had mild hyperplasia--atypical ILC cells--that very well could have caused me real problems in the future.

I told my oncologist I wanted everything and the kitchen sink of tx thrown at me, since it might be the only time to do it, and I wanted no regrets if I did have a recurrence later.

As for anti-hormonals, I took tamoxifen for a year till we confirmed that chemo put me in chemo-pause. Then I took Arimidex which had horrible side effects for me, and then switched to Aromasin, which (after like 7 years or so) I'm still tolerating with little side effects.

I hope that helps!

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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Jan 6, 2020 06:31AM claireinaz wrote:

PS Research proves that assertive patients of any kind have longer survival rates. If your anger motivates you to actively research, ask questions, demand gold standard care, and ask for cutting edge treatment as a proactive patient-that's great. I was, and I think it helped my overall care.

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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Jan 6, 2020 07:46AM MikaMika wrote:


Thank you!

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

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