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Topic: Pleomorphic ILC, Oncotype 22

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

Posted on: Dec 15, 2018 01:16PM - edited Dec 17, 2018 01:29PM by Ldrumm65

Ldrumm65 wrote:

Hello - I was diagnosed with pleomorphic ILC on October 3, 2018 in my left breast. Subsequent mammograms, MRIs, and ultrasounds of my right breast and left lymph nodes did not show cancer anywhere else. Only in my left breast. I had double mastectomy on November 1, 2018 even though the cancer was only diagnosed in my left breast. I opted for the double mastectomy as preventative. I did not want to take any chances that cancer would later be found in my right and have to go through all this again. After surgery, the doctors found three cancer tumors in my right breast and my sentinel lymph node had micrometastic cancer and a cancer cell was found in two other lymph nodes.

This is a also reoccurrence of breast cancer for me. I was diagnosed with DCIS in June 2011 and chose a lumpectomy and radiation.

My oncologist doctor with Sarah Cannon is recommending no chemo based on my oncotype score of 22. He recommends 10 years of anastrazole. My radiation doctor is recommending radiation to my breast (again), upper chest, and lymph nodes. He also mentioned removing all my lymph nodes as a possibility.

I am in the process of seeking a second opinion on treatment from the UnIversity of Kansas Medical Center. I have met with the oncologist only so far. The radiation doctor with KU is the same doctor who ordered my radiation in 2011. I will meet with him this week. The oncologist wants to do 8 sessions of chemo every 2 weeks. Then hormone therapy also. He feels like the size of my tumor at 6 cm, the fact that cancer was in my right breast in addition to my left, and was also found in my lymph nodes as reasons not to just go by the Oncotype 22 score of no chemo.

I should also add that my cancer was a grade 3 as diagnosed by Sarah Cannon and the University of Kansas Medical Center is doing pathology also.

My oncologist is getting input this week from multiple oncology and radiation doctors to help determine the best treatment plan for me.

Has anyone else been in a similar situation with an intermediate Oncotype score, tumor on the large size, and had cancer that had spread to lymph nodes? If so, what was your treatment plan?

Dx 5/2011, DCIS, Left, 2cm, Stage 0, ER+/PR+, HER2- (FISH) Surgery 6/10/2011 Lumpectomy: Left Dx 10/3/2018, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- (FISH) Dx 11/1/2018, ILC, Right, 3cm, Stage IA, Grade 3, ER+/PR+, HER2- (FISH) Surgery 11/1/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Surgery 5/10/2019 Lymph node removal: Underarm/Axillary Radiation Therapy Breast
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Dec 15, 2018 02:44PM Moderators wrote:

Hi Ldrumm, and welcome to,

We're so very sorry you find yourself here with this diagnosis, but we can assure you you'll find our Community an incredibly helpful resource, full of many members always willing to offer information, advice, and support. We're all here for you!

It's a little quiet around here on the weekends, but we're hoping someone will stop by soon to offer you their experiences.

We look forward to hearing more from you soon! Let us know if you need any assistance while navigating around the boards.

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Dec 15, 2018 07:37PM jessie123 wrote:


Don't worry you will have answers soon - this is a very supportive board. I can't help because I'm newly diagnosed and haven't even completed my testing yet. However, I've learned tons from this board the short time I've been here. You might try posting your question on some of the other boards since not as many people come to the ILC section --- it seems only 10% of breast cancer is lobular.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 15, 2018 11:29PM Tsheresse wrote:

Hello, I wanted to respond and tell you I’m sorry about your diagnosis. I am new to this board. I was diagnosed with ILC in my left breast and lymph nodes on Oct 4th. I had a bilateral mastectomy on November 26. I had 14 lymph nodes removed and cancer was found in 5 of them. My tumor was 3.1 cm grade 2. I am not familiar with all of the terms yet so please forgive me. But I wasn’t given an Oncotype. I am supposed to have 8 rounds of chemo every two weeks followed by radiation and then taking the hormone blocker for 10 years. I just got my port put in yesterday. I hope some of this helps. I am new here so I am also looking for answers. Prayers up for your healing

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Dec 15, 2018 11:53PM Meow13 wrote:

I think you are very wise to get a second opinion. Good luck to you.

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Dec 17, 2018 12:16PM - edited Dec 17, 2018 02:17PM by Gracejoy

In the article below,they say in addition to oncotype DX score, age and tumor grade need to to be considered in individualized treatment decision. I hope this helps

Understanding Your Oncotype DX Test Results

Once you have been tested, your doctor will receive a report with the results of the Oncotype DX breast cancer test. The information in this report can help you and your doctor make a more confident decision about your treatment following surgery.

Your Oncotype DX test report includes a Recurrence Score result (for patients with early-stage invasive breast cancer) or a DCIS Score result (for patients with non-invasive breast cancer), which is a number between 0 and 100. The lower the Recurrence Score or DCIS Score, the lower the chances are that a woman's breast cancer will come back; the higher the Recurrence Score or DCIS Score, the greater the chances that the breast cancer will come back. In the case of early-stage invasive breast cancer, the Oncotype DX test is the only genomic test that can also predict whether a woman will benefit from chemotherapy. The lower the Recurrence Score result, the less likely a woman is to benefit from chemotherapy, and the higher the Recurrence Score result, the more likely she is to benefit from chemotherapy.

The following tables provide general guidelines for interpreting your score. Your doctor will help you understand the meaning of your results.

Oncotype DX Breast Recurrence Score Test (for early-stage invasive breast cancer) Over 50 Years Old: Recurrence Score Result What the Score Means 0-25The breast cancer has a low risk of recurrence with hormonal therapy. There will be no benefit from chemotherapy.26-100The breast cancer has a high risk of recurrence with hormonal therapy, and the benefit of chemotherapy are likely to be substantial. 50 Years Old or Younger: Recurrence Score Result What the Score Means 0-15There will be no benefit from addition of chemotherapy to hormonal therapy.16-20There will be approximately 1.6% chemotherapy benefit in addition to hormonal therapy.21-25There will be approximately 6.5% chemotherapy benefit in addition to hormonal therapy.26-100The breast cancer has a high risk of recurrence with hormonal therapy alone, and there will be substantial benefit from chemotherapy. Oncotype DX Breast DCIS Score Test (for stage 0, DCIS breast cancer) DCIS Score Result What the Score Means Lower than 39The breast cancer has a low risk of local recurrence. The benefit of radiation therapy is likely to be small and will not outweigh the risks of side effects. Between 39 and 54The breast cancer has an intermediate risk of recurrence. It is unclear whether the benefits of radiation therapy outweigh the risks of side effects.Greater than 54The breast cancer has a high risk of recurrence, and the benefits of radiation therapy are likely to be greater than the risks of side effects.

Your Oncotype DX test results also provide additional information, including the activity levels of the estrogen, progesterone and HER2 receptor genes in your tumor. You and your doctor will consider your score, along with these factors and others such as your age and the stage and grade of your tumor, to make a more informed, individualized treatment decision.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall

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