Invasive Lobular Carcinoma Pleomorphic Level 3 (Oncotype Score 34)

Did you receive the Oncotype?

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/

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!!

@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?

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!

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.

Froom 2017:

The utility of the Oncotype DX in decision making for treatment of invasive lobular carcinoma (ILC) has not been investigated as the results reported by Genomic Health are largely in a population with invasive ductal carcinoma (IDC).

There is a lot of advocacy going on about lobular cancers. I would call the company (no longer Genomic Health, now called Exact Sciences apparently) for information on testing for lobular cancer.

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.

I think there is a misunderstanding here unless you're referring to some different usage?

A node 'taking dye' indicates that it is a node where the cancer cells would most likely infiltrate the lymphatic system because the dye is injected in the vicinity of the tumor tissue to identify the lymph nodes most likely at risk. (Usually the nodes closest to the cancer cells but not always. Thus the dye is used to detect the pipeline.)

If the biopsy is negative, there were no cancer cells in that 'sentinel node.' That's good news.

The Oncotype service reps are very helpful. You might want to talk to them to find out the test algorithm dealing with lobular cancers. They have strict protocols for tissue submission so I would be surprised if the test is invalid. And they do reject tissue from tumors submitted for tests that are inapplicable for that particular tumor type or stage, etc. Or with a seemingly incorrect biopsy so are careful about the integrity of the tests' statistical universe appropriateness.

Thank you!