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Topic: Anyone else Lobular and her2 positive?

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

Posted on: Sep 5, 2020 01:38PM

Scarecrow20 wrote:

Hi, hope everyone is well.

I was diagnosed in January this year and this is my first post. I can’t seem to find many people that also have ILC cancer and that are her2 positive and I have been searching for survivors for reassurance 🤞

I have a large tumor which was reduced to 3cm after chemo. My MO Is waiting for Her2 results from histology to check if I should now receive Kadcyla. Then it is RT and Tamoxifen.

I check online and I do not see anything good regarding her2 positive ILC large tumor with lymph node involvement and would love to hear from survivors please. Seems that ILC can normally return many years later but with her2 positive it is likely to be within 2 years?

Trying to keep positive as 47 and want many more years with my lovely family! Thank you !


Dx 1/6/2020, ILC, Left, 6cm+, Grade 3, 2/11 nodes, ER+/PR+, HER2+ (SPOT) Chemotherapy 2/25/2020 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Dx 4/2020, DCIS, Right, Stage 0, 0/0 nodes Surgery Mastectomy: Left, Right Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 5, 2020 08:33PM InfusionConfusion wrote:

I'm lobular and her2+, had a large tumor (10cm+) and 4 lymph nodes (age 43 at dx). I was diagnosed last year in May but my symptoms started at least 10 months before. It is unusual but I was told even though lobular is slow growing, the her2 makes it faster. I don't know what survival rates are for our specific case but I'm hoping to post back here in a few years saying it's all good! I had all the treatment they could give me. I hope we get some responses here from long term survivors but regardless we should stay positive.

Dx 5/31/2019, ILC, Left, 6cm+, Stage IIIB, Grade 1, 4/4 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 6/22/2019 Perjeta (pertuzumab) Targeted Therapy 6/22/2019 Herceptin (trastuzumab) Chemotherapy 6/22/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/6/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Radiation Therapy 1/13/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 2/27/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 6, 2020 06:29AM Scarecrow20 wrote:

Thanks for posting infusionconfusion...hopefully we we will receive some more responses and write our own in a few years, as you say! All the best

Dx 1/6/2020, ILC, Left, 6cm+, Grade 3, 2/11 nodes, ER+/PR+, HER2+ (SPOT) Chemotherapy 2/25/2020 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Dx 4/2020, DCIS, Right, Stage 0, 0/0 nodes Surgery Mastectomy: Left, Right Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 6, 2020 07:38AM Flnana2 wrote:

I am ILC and triple positive. I am just 15 months into this journey but plan on being around for a while. I’ve had TCPH, double mastectomy, radiation, Kadcyla and continue on letrazole for 10 years. Hopefully that is enough to keep this monster at bay.

Dx 6/19/2019, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2+ (FISH) Chemotherapy 7/23/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/9/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 9, 2020 01:47AM Colholly wrote:

I’ve just been diagnosed with lobular cancel a few weeks ago but I don’t know what her2 is so will have to find out !

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Sep 9, 2020 06:03AM Moderators wrote:

Colholly, welcome to Breastcancer.org! We're sorry that you have to be here, but glad you found us!

We're sure some other members will be around soon to offer some insight and information but, in the mean time, you might find this article helpful: HER2 Status

Also, we wanted to suggest suggest that you fill out your diagnosis and treatment information on your profile so that other members can easily know your situation and answer your questions.

We hope this helps! We look forward to hearing more from you soon!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 9, 2020 09:12AM Scarecrow20 wrote:

Sorry to hear of your diagnosis colholly...a few weeks after my biopsy I was told what receptors my breast cancer had, for example my cancer is ER positive PR positive and Her2 Positive and the oncologist needs this information so that they can confirm which treatments/drugs will be best for you

Dx 1/6/2020, ILC, Left, 6cm+, Grade 3, 2/11 nodes, ER+/PR+, HER2+ (SPOT) Chemotherapy 2/25/2020 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Dx 4/2020, DCIS, Right, Stage 0, 0/0 nodes Surgery Mastectomy: Left, Right Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 16, 2020 03:07AM Colholly wrote:

Hi Scarecrow

Good to hear from you.

just been to see the surgeon who has explained the receptors, HER2 and the bilateral mastectomy op which I should have in next 2 weeks.

How did you op go?

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Nov 10, 2020 08:26PM FunShine wrote:

Hi everyone, it's nice to meet you all. Hi Colholly, I hope your surgery went well. I was diagnosed last year with triple positive ILC. My profile looks a lot like InfusionConfusion . I had chemo and targeted therapy, then DMX, then rads, then just finished my targeted therapy and and facing a delayed DIEP flap reconstruction on this coming Friday the 13th. I hope you are all doing well. I've never found anyone who had triple positive ILC, so it's nice to know I'm not alone.

Dx 8/6/2019, ILC, Right, 5cm, Stage IIIB, Grade 2, 2/9 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 8/15/2019 Herceptin (trastuzumab) Targeted Therapy 8/16/2019 Perjeta (pertuzumab) Chemotherapy 8/16/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/18/2019 Mastectomy: Left, Right Radiation Therapy 3/2/2020 Breast, Lymph nodes, Chest wall Hormonal Therapy 5/15/2020 Aromasin (exemestane) Surgery 11/13/2020 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 29, 2020 06:08AM Scarecrow20 wrote:

coholly and Funshine - sorry for delay in posting... hope your ops went well 🤞 Unfortunately I had a haematoma and second op tho fine after this. I was not offered an immediate reconstruction.interestingly, my residual tumor did not have her2 so looks like herceptin and perjeta worked. Breast cancer is v confusing! So still on herceptin and perjeta rather than kadcyla.

Dx 1/6/2020, ILC, Left, 6cm+, Grade 3, 2/11 nodes, ER+/PR+, HER2+ (SPOT) Chemotherapy 2/25/2020 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Dx 4/2020, DCIS, Right, Stage 0, 0/0 nodes Surgery Mastectomy: Left, Right Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)

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