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Topic: Any experiences of invasive pleomorphic lobular carcinoma?

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

Posted on: Dec 9, 2020 06:07PM - edited Dec 9, 2020 06:23PM by jumpstart

jumpstart wrote:

Hi all, I've just managed to get hold of a copy of my pathology report today and noticed it said I have 'invasive pleomorphic lobular carcinoma'. This was never explained to me by either my breast surgeon or oncologist, but seems very rare (less than 1% of breast cancers?) and some differing reports of it not having a great prognosis compared to regular ILC.

Just wondering if anyone else has this and what you have been told about it, what your treatment plan is, etc.

(editing to add have now been able to find some more historic threads on this, but if anyone has any further experiences to share that would be great

Thanks in advance.

Linda

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Dec 9, 2020 06:49PM LillyIsHere wrote:

Linda, I am sorry you are joining this club. In my experience, other than ILC, some other "junk" found after BMX was LOBULAR CARCINOMA IN SITU: Present -pleomorphic type, intermediate to high nuclear grade, associated with necrosis and calcifications. I think it is on the side where positive nodes were found. It sounds aggressive but I wasn't told so. The treatment plan for me is only letrozole and zometa. Are you planning to start any AI treatment? Did your MO said anything in particular for pleomorphic type?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” 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) Targeted Therapy
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Dec 9, 2020 07:13PM - edited Dec 13, 2020 08:21AM by jumpstart

Thanks so much for the reply and for sharing! Neither my breast surgeon nor oncologist mentioned the pleomorphic aspect, I only noticed when I asked for a copy of my pathology report today - and was really surprised to see it and then find out how rare it is!

I am currently doing chemo and will have radiation after, and then will start ovarian suppression and an AI. (I will also need a BMX at some point due to genetics results showing high risk of new breast cancers. I was only able to get genetic testing after initial lumpectomy - I live outside of the US, some of these things take a while to get moving here.)

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Dec 9, 2020 10:23PM LillyIsHere wrote:

Since I asked for BMX, I was able to skip radiation however, I asked for chemo and I was told, in my case will cause more harm than good. I thought things moved slow here in USA. Took me almost 2 months from diagnoses to surgery and this because I was pushing to get the surgery ASAP. I am also over 90%ER+. Do you mind sharing what continent is your medical center?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” 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) Targeted Therapy
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Dec 10, 2020 01:06AM - edited Dec 11, 2020 08:06PM by KMo1975

Hi Linda,

When starting this journey 3 years ago this month, I too searched this web-site and felt very alone with what seemed like a rare diagnosis

I was diagnosed with Pleomorphic Invasive Lobular Carcinoma in Dec 2017. I had neoadjuvant endocrine therapy ( Arimidex). Lumpectomy in September 2018. Re-excision December 2018 for better margins for the PLCIS which was indicated from path report from 1st lumpectomy. Full breast radiation in April of 2019. I continue taking Arimidex for 5 years. After 5 years we will re-evaluate.

Finding treatment information about pleomorphic invasive lobular and pleomorphic lobular carcinoma in situ was difficult as no one institution has many cases and published papers are not current. I had 2nd and 3rd opinions both here in Chicago where I live and in Boston at Dana Farber.

I also had my pathology slides read by Loyola, Northwestern, Johns Hopkins, Dana Farber and a private company. It helped guide my treatment decisions. I did not have Chemotherapy as genetic testing and the mammaprint test indicated no potential benefit. Every case is different as each individuals pathology will be different, therefore our treatments will differ. Pathology should drive and guide treatment. Trust the process. I wish you peace in the days ahead. Bests, Kim



Pleomorphic ILC and Pleomorphic Lobular Carcinoma In Situ 4.5 cm Dx 12/1/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 2/1/2018 Arimidex (anastrozole) Surgery 9/24/2018 Lumpectomy; Lymph node removal: Sentinel Surgery 12/19/2018 Lumpectomy: Right Radiation Therapy 3/4/2019 Whole-breast: Breast
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Dec 10, 2020 05:51AM - edited Dec 13, 2020 08:23AM by jumpstart

Thanks so much for the replies.

Lilly, I am in Europe. I had asked for oncotype /mammaprint testing to help inform treatment options and was told it wasn't necessary (I don't think it's routinely done here) and chemo would be needed as was node positive, grade 3 and I am fairly young. Also used an online predictive tool which showed benefit of chemo - but this didn't consider it was ILC

I had really been hoping to avoid chemo, so would have liked to have been able to explore other options in more detail.

Thanks so much for sharing your experiences, Kim -and how wonderful you were able to get so many informed opinions on your treatment options! Here's hoping there's some more research in years to come on this rare BC/ILC type.

Just to check if either of you had any positive results for genetic variations?

thanks again for the replies!

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Dec 10, 2020 08:35PM nash wrote:

Jumpstart, I have Stage IV pleomorphic ILC. You probably have already seen a lot of my posts if you did a site search, so I won’t reiterate here. But feel free to PM me if you gave specific questions.

Stage IV Pleomorphic ILC, initially diagnosed at age 38. Mets to brain, cranial nerves, bone and breast Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Hormonal Therapy 7/1/2018 Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy 7/3/2018 External: Brain Radiation Therapy 7/27/2020 External: Brain Radiation Therapy 2/23/2021 External: Brain
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Dec 10, 2020 10:35PM - edited Dec 10, 2020 10:39PM by JRNJ

jumpstart, My "former" breast surgeon totally ignored it, and tried to tell me I was reading the pathology report wrong. My second MO opinion said no chemo. My third MO opinion at Sloan, #2 hospital in the US, said yes it's pleomorphic and it was a factor in saying yes to chemo, not the only factor. I had LVI and extranodal extension. My oncotype was 15. If it was below 12 she would have said no chemo. I think the grade 3 and pleomorphic go hand in hand, because regular ILC is usually a lower grade. I was very paranoid due to the positive nodes. However, they recommended a less toxic chemo, CMF, which is pretty rare in the US with most doing TC. I think you are making the right decision with 3 positive nodes and pleomorphic. But I think taxol is more popular in the US over taxotere. I hope it goes well for you.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/3/2020 Aromasin (exemestane) Hormonal Therapy 8/5/2020 Arimidex (anastrozole) Surgery 8/24/2020 Prophylactic ovary removal Surgery 1/28/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/9/2021 Femara (letrozole)
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Dec 11, 2020 07:00PM LillyIsHere wrote:

Ladies, I found hope:

In conclusion, PLC is not an aggressive subtype of breast cancer as previously reported in the literature. Although they might have less ER and PR expression as compared to cILC, they have similar outcome in terms of disease-free and overall survival as compared to cILC.

Clinical Outcome in Pleomorphic Lobular Carcinoma and Pleomorphic Lobular Carcinoma In-Situ

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” 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) Targeted Therapy
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Dec 11, 2020 08:11PM KMo1975 wrote:

Linda,

I had no genetic mutations, node negative and diagnosed at age 60.

Kim


Pleomorphic ILC and Pleomorphic Lobular Carcinoma In Situ 4.5 cm Dx 12/1/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 2/1/2018 Arimidex (anastrozole) Surgery 9/24/2018 Lumpectomy; Lymph node removal: Sentinel Surgery 12/19/2018 Lumpectomy: Right Radiation Therapy 3/4/2019 Whole-breast: Breast
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Dec 11, 2020 10:08PM OnTarget wrote:

JRNJ, I got my second opinion at MSK and they were ambivalent about me doing chemo, but said they'd recommend CMF. My MO wasn't in favor and we went with TC. It seems to be a bit of a crap shoot.

I had pleomorphic features, but not grade 3. I was on the line for chemo and I went with it as the most aggressive treatment option.

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 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/14/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/29/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 5/31/2021 Reconstruction (right): Tissue expander placement
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Dec 11, 2020 11:54PM - edited Dec 13, 2020 08:24AM by jumpstart

Thanks so much for the reply, nash - I will look through your posts and really appreciate being able to write if I have any questions.

JNRJ - thank you so much for sharing your experiences.

Lilly, thanks a lot for sharing that article - I hadn't seen that one!! that is really helpful and good to know about -and different from what I had seen elsewhere!

Kim thanks for replying about the genetic factors and age upon presentation, etc.

OnTarget thanks for sharing your chemo experience - that is really useful.

Linda

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Dec 11, 2020 11:58PM JRNJ wrote:

Hi On Target, Yes, I remember our previous conversations. My MSK dr. was not ambivalent, she said definitively yes, because of my 2 positive nodes, LVI, extranodal extension and ki67 being borderline. But my Rutgers opinion said no, treat with hormone therapy. I don't think they consider at all that some people can't tolerate hormone therapy.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/3/2020 Aromasin (exemestane) Hormonal Therapy 8/5/2020 Arimidex (anastrozole) Surgery 8/24/2020 Prophylactic ovary removal Surgery 1/28/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/9/2021 Femara (letrozole)
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Dec 15, 2020 07:07PM cathmg45 wrote:

Hi Jumpstart,

I was diagnosed in 2008 with stage 2 PILC, no nodes. However, my oncologist said he wouldn't do the oncotype because it would probably show me in a grey area, and he recommended chemo because of the Pleomorphic aspect. I had a Bmx, and 4 rounds of taxotere and cytoxan. This is a rare variant, to be sure. I thank my lucky stars often that I am 12 years out. Wishing you all the best,

Catherine

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2-
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Dec 16, 2020 05:06AM jumpstart wrote:

Thanks so much for the reply Catherine and so great to hear you’re doing well :) That’s really useful to know about the oncotype/chemo consideration and seems consistent with the approach from my oncologist.

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Dec 22, 2020 12:59AM naps wrote:

Hello there,

I was diagnosed with PILC in early 2016 at age 44. ER/PR neg, HER2+ initially, then TN on residual. I ended up getting 3 opinions--treatment recommendations were said to be made based on features/factors other than the histology. 2/3 recommended adjuvant chemo with AC after I had had neoadjuvant with TCHP. I also enrolled in a vaccine trial.

I am continuing to do very well and feel incredibly fortunate. Good luck to all of you. Wishing you all the best!

Dx 3/2016, ILC, Left, Stage IIIA, Grade 2, ER-/PR-, HER2+ Surgery 8/10/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy AC Immunotherapy
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Dec 23, 2020 08:40PM BeingPresent100 wrote:

Hi Linda- I was diagnosed with PILC in June 2019. I had a DMX in July 2019 as well as lymph node dissection. I had one sentinel node light up. My oncologist, at MSKCC, strongly recommended chemo because of the lymph node; PILC and size of my tumor(s). I did go through chemo and then radiation. I was freaked by the PILC- especially when I'd go to to Dr. Google. ;-) That said, my oncologist said PILC can mean more aggressive or it can mean just the shape of it. He told me to get off the googles as the latest white papers that Sloan has on PILC won't be out for another year or so.

I'm now done with all active treatment and take Letrazole daily. Feel free to DM me if I can answer any further questions.


Wishing you and all the women on this board a magical holiday season!


--Tina

Dx ILC, Right, 4cm, Stage IIA, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Dec 24, 2020 12:08AM LillyIsHere wrote:

naps, what type of vaccine trial did you participate? Any news how did it go?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” 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) Targeted Therapy
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Dec 24, 2020 04:06AM jumpstart wrote:

Naps thanks so much for sharing - and so glad to hear you continue to do well!

Tina - that is really interesting to hear and sounds like good advice by your oncologist :) congrats on finishing active treatment!

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Mar 10, 2021 08:55AM naps wrote:

Hello again,

Sorry for the delayed response! I participated in one of the Neuvax (nelipepimut-S) trials. I don't know the results yet, though I did find out I received the vaccine. There's been some indication from another trial that this vaccine may have benefit in the TN population, which suits me as that's what residual disease at surgery turned out to be.

Dx 3/2016, ILC, Left, Stage IIIA, Grade 2, ER-/PR-, HER2+ Surgery 8/10/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Breast, Lymph nodes, Chest wall Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy AC Immunotherapy

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