Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

Posted by ilcpfighter @ilcpfightee, Sep 8, 2022

I was diagnosed with ILC Pleomorphic Type Level 3. I am waiting for my Oncotype and was wondering if anyone here had a similar diagnosis and what your Oncotype Score was? Mine was ER+ PR- HER2 -. Waiting is so hard!

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@ilcpfightee

So Oncotype is a good indicator with lobular to indicate cancer that responds to chemo? The dye was injected during surgery and only was seen in one node. That node was removed.

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I don't know the accuracy/validity of any Oncotype test for predictions about lobular cancers but Oncotype could give you more information and their phone number is:
1(866) 662 6897

I'm inclined to think that they wouldn't offer a test unless they've verified the accuracy of the results and conceptual value of the test but, again, they'll be able to answer your questions. As should your oncologist who should be the person to query further as well. And ask your doctor if any other test(s) would be valuable whether covered by insurance or not. [I've found that doctors think more in terms of insurance coverage than I do. I want to know if ANYthing that might be important and I'll decide about the financial stuff myself.]

I hope you feel better that a negative lymph node is in fact good news.

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ER/PR and HER 2 Status- Invasive Lobular Carcinoma Pleomorphic Grade 3
This is just something I am pondering and thought maybe someone on the boards may know what it all means.

I am ER 70%, PR negative, and HER2 negative, with invasive lobular carcinoma, grade 3, pleomorphic.

If only 70% of my cancer is driven by Estrogen, and the other two things are negative, is something else also driving the growth?

Just curious, with two negatives and one that isn't 100% positive, I found it concerning.

Thanks for any insight anyone has!

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@ilcpfightee

ER/PR and HER 2 Status- Invasive Lobular Carcinoma Pleomorphic Grade 3
This is just something I am pondering and thought maybe someone on the boards may know what it all means.

I am ER 70%, PR negative, and HER2 negative, with invasive lobular carcinoma, grade 3, pleomorphic.

If only 70% of my cancer is driven by Estrogen, and the other two things are negative, is something else also driving the growth?

Just curious, with two negatives and one that isn't 100% positive, I found it concerning.

Thanks for any insight anyone has!

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@ilcpfightee, I'm following your thinking "If only 70% of my cancer is driven by Estrogen, and the other two things are negative, is something else also driving the growth?"

However, the determination of the presence or lack of hormone receptors is important to understand which treatments are effective, rather than considering what is "driving growth". The types of breast cancer that do not have hormone receptors are not affected by endocrine treatments aimed at blocking hormones in the body.

What treatments are you getting or have had? Are they treating your cancer like they would treat triple negative breast cancer?

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@colleenyoung

@ilcpfightee, I'm following your thinking "If only 70% of my cancer is driven by Estrogen, and the other two things are negative, is something else also driving the growth?"

However, the determination of the presence or lack of hormone receptors is important to understand which treatments are effective, rather than considering what is "driving growth". The types of breast cancer that do not have hormone receptors are not affected by endocrine treatments aimed at blocking hormones in the body.

What treatments are you getting or have had? Are they treating your cancer like they would treat triple negative breast cancer?

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Very helpful information! I/ 57 yrs and had lumpectomy surgery 11/30 for ILC and just received first labs. Negative in node removed - so relieved and 1.8 cm so thought is Stage 1, Grade 2. I'm waiting on oncotype and was referred to radiation oncology consult in 2 weeks but expect daily for 4-6 weeks. I understand radiation is much for targeted now and it sounds like the newest treatments -the proton beam (only at MGH as close to Boston) is not typically used for breast radiation. (reserved for pediatric, brain, lung). Is this accurate? It seems the radiation is so critical but is there much difference in the treatment from one hospital to another? The nurse said "pretty standard"?? I'm planning on meeting an oncologist also but am told the oncologist works more with anti hormone pills and/or chemo. Any help/advice appreciated. Thanks!!

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@semurrey

Very helpful information! I/ 57 yrs and had lumpectomy surgery 11/30 for ILC and just received first labs. Negative in node removed - so relieved and 1.8 cm so thought is Stage 1, Grade 2. I'm waiting on oncotype and was referred to radiation oncology consult in 2 weeks but expect daily for 4-6 weeks. I understand radiation is much for targeted now and it sounds like the newest treatments -the proton beam (only at MGH as close to Boston) is not typically used for breast radiation. (reserved for pediatric, brain, lung). Is this accurate? It seems the radiation is so critical but is there much difference in the treatment from one hospital to another? The nurse said "pretty standard"?? I'm planning on meeting an oncologist also but am told the oncologist works more with anti hormone pills and/or chemo. Any help/advice appreciated. Thanks!!

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Proton therapy can precisely target and deliver high radiation doses to a tumor to kill cancerous cells. Proton therapy may be especially beneficial for some people with breast cancer by minimizing damage to nearby tissue and critical organs such as the heart and lungs.

Sue, you might be interested in this related discussion where you can ask members who have had proton beam therapy for breast cancer about their experiences:
- My experience with proton beam therapy & breast cancer https://connect.mayoclinic.org/discussion/breast-cancer-diagnosis-in-february-2016/

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@semurrey

Very helpful information! I/ 57 yrs and had lumpectomy surgery 11/30 for ILC and just received first labs. Negative in node removed - so relieved and 1.8 cm so thought is Stage 1, Grade 2. I'm waiting on oncotype and was referred to radiation oncology consult in 2 weeks but expect daily for 4-6 weeks. I understand radiation is much for targeted now and it sounds like the newest treatments -the proton beam (only at MGH as close to Boston) is not typically used for breast radiation. (reserved for pediatric, brain, lung). Is this accurate? It seems the radiation is so critical but is there much difference in the treatment from one hospital to another? The nurse said "pretty standard"?? I'm planning on meeting an oncologist also but am told the oncologist works more with anti hormone pills and/or chemo. Any help/advice appreciated. Thanks!!

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Did you receive the Oncotype?

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@polianad22

Did you receive the Oncotype?

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Hi! Fortunately my oncotype was 14 so chemo not recommended. I started full breast radiation (very small breasts) on 12/27 at Dana Farber- four down - 15 to go is the plan. I did get a few opinions on radiation and decided proton beam would not be best approach. Hope this helps.

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@semurrey

Hi! Fortunately my oncotype was 14 so chemo not recommended. I started full breast radiation (very small breasts) on 12/27 at Dana Farber- four down - 15 to go is the plan. I did get a few opinions on radiation and decided proton beam would not be best approach. Hope this helps.

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Why radiation?

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What is oncotype score.. just beginning our unfortunate journey.. daughter , 41 dionosed with IVLC 3 cm. Time for more texting.. anyone one with similar?
Advice ? Good luck to you..

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@estebanf

What is oncotype score.. just beginning our unfortunate journey.. daughter , 41 dionosed with IVLC 3 cm. Time for more texting.. anyone one with similar?
Advice ? Good luck to you..

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@estenbaf do you want to post a new discussion? Are you saying your daughter has invasive lobular cancer, 3cm?

Testing will tell her if her tumor is estrogen positive, progesterone positive and HER2 negative. In that case (ER+ and HER2-) a genomic test called the Oncotype will be done. The report will tell your daughter whether chemo is of benefit and also what the risk of recurrence might be with or without anti-hormone medications.

IF ER- or HER2+ the Oncotype won't be done.

According to the info below most lobular cancers are hormone positive and respond well to treatment. Lobular can be hard to find because it does not form clumps or masses.

https://www.healthline.com/health/breast-cancer/lobular-breast-cancer-prognosis-survival#prognosis

Let us know when you have more information. We cannot give medical advice but we can share our own experiences.

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