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Topic: Pleomorphic Invasive Lobular Carcinoma

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

Posted on: Jul 29, 2018 05:03PM

gwydiana wrote:

What a crazy and bizarre diagnosis. Am I the only Pleomorphic here?

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/25/2018 Femara (letrozole)
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Posts 31 - 44 (44 total)

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Dec 7, 2019 08:22PM MikaMika wrote:

It's interesting. I'll ask my oncologist next time.

Thank you!

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 30, 2019 04:13PM cathmg45 wrote:

Hi gwydiana,

Yes, I share that rare designation with you and others on this thread. My onc said that the pleomorphic aspect meant it was potentially more aggressive and likely to recur early. He recommended chemo no what the oncotype test would say, so I did 4 rounds of CT. Luckily, as you can see from my diagnosis date, that was quite a few years ago!

Happy New Year,

Catherine

Dx 7/17/2008, ILC, 4cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2-
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Dec 31, 2019 05:51PM mac5 wrote:

Hello to all...

After reading these posts I re-read my Pathology Report.

I found this article that might be of interest.

http://surgpathcriteria.stanford.edu/breast/inflobcabr/grading.html

Happy Best Year To Come

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-
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Jan 1, 2020 08:11PM wslno66 wrote:

I am new to the forum. I am glad to see this topic. I completed treatment just over a year ago. I knew PLIC was uncommon, but didn't realize just how rare until I started researching side effects of hormonal therapies.

Most of the studies I have been able to find are retroactive data inspection. After reading this particular forum, I see that most of the participants had much smaller tumors and a lower grade than I did at diagnosis. I am hopeful for a long future, but most of the information I have been able to find indicates it is an aggressive form of BC.

I'm wondering if anyone else is taking, or has taken Triptorelin injections as part of their hormonal treatment?

Pleomorphic Lobular Invasive Carcinoma- Dx 5/18, chemo, mastectomy and radiation. Anastrozole and Triptorelin Dx 5/1/2018, ILC, Right, 6cm+, Stage IIIC, Grade 2, 14/16 nodes, ER+/PR-, HER2- (IHC) Surgery 11/27/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
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Jan 24, 2020 07:26AM - edited Jan 24, 2020 07:30AM by Moag

Hi, I did also have a pleomorphic ilc. It was grade 2, and I do think there might be grades of «pleomorphism». My KI67 was 31, so when I learned I was pleo it made finally sense, since I could not grasp why so many with ilc had such low KI67.

I did 4 rounds of EC90 and had radiation due to one lymph node unfortunately positive. They first thought I did not have cancer there, but was discovered after the operation pathology. Now with the pleo this also make more sense. It all is a shocking journey, and the pleo also was a shock, but now I have investigated and asked all my doctors, they all say that the most important is the well-known factors as hormon receptors, grade, size of tumor and lymph node involvement.

My doctors seems confident I will be an old lady, and did not even mention the pleomorphic fact, so I do believe it really is not a prognostic factor in it self.

Good to not feel all alone with this weird breast cancer, but sure wish nobody would be in this group.

Dx @41. Brca2+. Norway Dx 4/2018, LCIS/DCIS/ILC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Radiation Therapy Chemotherapy AC Hormonal Therapy Femara (letrozole) Surgery Prophylactic ovary removal Surgery Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left)
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Jan 24, 2020 10:41AM JRNJ wrote:

swino66 and Moag, My BS, who I later dumped, totally ignored the pleomorphic factor. I went for three opinions on chemo. Two ignored the pleomorphic factor and said no chemo. The third, MSK (Sloan), took it into consideration, along with other pathology factors and recommended chemo. I also argued with my breast surgeon about being pleomorphic, she didn't think I was, and Sloan confirmed I was. She didn't read my pathology report correctly. I've never heard of Triptorelin. It sounds like an equivalent to Lupron?, which Sloan recommended to suppress the ovaries. I'm planning on getting them removed, I don't want to be on another medication with side effects that might fail. My ovaries are really strong at 54 lol. Two periods on chemo so far. Looks like you've both had the max treatment, so you've done just about all you can to fight it. I had to fight for treatment, My Onco was low/gray area and my KI67 was borderline. So I didn't have the stronger chemo. Good luck!

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) Surgery Prophylactic ovary removal
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Jan 28, 2020 12:00AM HayleyLorene wrote:

Hi All,

I was diagnosed with ILC >30% pleomorphic in June 2018. My tumour was 12cm and 16/16 lymph nodes were positive with extensive extracapsular and extension. I was 34 at diagnosis.

I still haven't been able to find anyone with a similar diagnosis at a young age and it scares the hell out of me. Does anyone make it past 5 years?

Dx 6/5/2018, ILC, Left, 6cm+, Stage IIIC, Grade 3, 16/16 nodes, ER+/PR+, HER2-
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Jan 28, 2020 12:39AM JRNJ wrote:

of course. Check ilc long term survivor thread. Also another thread on stage iii survivors I forget where. What is your surgery and treatment?

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) Surgery Prophylactic ovary removal
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Jan 31, 2020 05:25PM Sandiegohoneybee wrote:

I’m the only one here that’s classic with ER and her2+. My estimate is bout 1500 people in US have same thing. 18 grueling herceptin pergeta infusions. Chemo rads etc. did you get second opinion on biopsy pathology. I had three different hospitals look to be sure. I was diagnosed stage III although I had mammograms all my life and I had three mammograms and five ultrasounds and denied a biopsy within the first eight months of 2018 I fired all of those doctors and I hired an attorney.venting.

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Jan 31, 2020 05:27PM Sandiegohoneybee wrote:

I’m in Clinton. Where r u?

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Jan 31, 2020 11:04PM JRNJ wrote:

Sandie, so sorry, ILC is sneaky and hard to detect. That is why I pushed for BMx, and chemo. I had my first 3d mammogram this year, and I think it was there before and not detected, and I'm mad I didn't know about 3d sooner, just because my facility didn't have it sooner, and I never got any information from my gyn. The baby Dr. I saw in July offered me hormone replacement therapy. I'm like, no thanks, right before dx. Every year I went, the dr or nurse I saw the year before quit, need to find a new gyn, but too late now. I also found out a friend of mine gets MRIs every few years, just for screening, because she has dense breasts. Why is proper screening so hard to get for everyone! I'm in Jackson. Dated someone in Clinton for many years in my 20s.

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) Surgery Prophylactic ovary removal
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Apr 15, 2020 12:40AM wslno66 wrote:

So my med onco took me off the Triptoelin and I am just on Anastrizole now. My pathological stage is IIIc. That is pretty scary for me as I understand this is considered late stage - just before metastasis. My medical onco that doesn’t believe in giving predictions for false hope or negative thoughts- basically said I am 50/50 for a five year survival rate. I’m trying not to be terrified, but there is some grimness In the numbers. I get blood work every 3 months, but no scans. Is this kind of follow up typical? Trying to just move forward with life and find joy in each day. But, that diagnosis is pretty daunting. I’m about 15 months from my initial treat completion. A little nervous about the IIIC coming down. Anyone know people that make long term progress??

Pleomorphic Lobular Invasive Carcinoma- Dx 5/18, chemo, mastectomy and radiation. Anastrozole and Triptorelin Dx 5/1/2018, ILC, Right, 6cm+, Stage IIIC, Grade 2, 14/16 nodes, ER+/PR-, HER2- (IHC) Surgery 11/27/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
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Apr 15, 2020 08:24AM BevJen wrote:

wslno66,

I was IIIc, also ILC, originally diagnosed in 2003. In 2006, I had a single site metastasis and went on letrozole. No further issues until 2019 when I developed additional mets. As far as I know, I'm still here (so that's 16 1/2 years from original surgery/diagnosis.) I've just lived my life and didn't focus on my illness (I'm pretty good at compartmentalizing.).

BUT I would say that I wouldn't be happy if my MO had told me that either in 2003 or in 2006 -- I might be searching for another oncologist. I understand giving you stats, but we can all look those up. What your MO should be giving you is HOPE. He/she has no idea how you will do, and stats, which focus on cases in prior years, are somewhat deceiving considering how many drugs have emerged during the past 5 or so years that keep us keeping on.

Good luck. I was on letrozole from 2006=2019 -- so may you get a long run on anastrozole!


Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Radiation Therapy Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Apr 15, 2020 08:52PM wslno66 wrote:

Thank you so much for telling me your story. It helps! I am living life and can compartmentalize well.

Thank you again for the support

Pleomorphic Lobular Invasive Carcinoma- Dx 5/18, chemo, mastectomy and radiation. Anastrozole and Triptorelin Dx 5/1/2018, ILC, Right, 6cm+, Stage IIIC, Grade 2, 14/16 nodes, ER+/PR-, HER2- (IHC) Surgery 11/27/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Lymph nodes, Chest wall

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