Lobular Breast Cancer: Let's share and support each other

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Hi Diana. It has been a little over four years since the date of my diagnosis, three years since my year of treatment and Iā€™m doing great!

Along with my lumpectomy, I had four rounds of A/C chemo, four rounds of Taxol and finished one full year of Herceptin and Perjeta.

I then had the standard four weeks of targeted radiation.

I know this all sounds incredibly daunting but itā€™s very doable. Just take it one week at a time and do the best you can.

I honestly feel fabulous. Currently I see my oncologist every six months along with having bloodwork and my annual screening mammogram.

Youā€™ll be okay. It just takes time. 🙏♥️🙏

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@lisakinpa

Hi Diana. It has been a little over four years since the date of my diagnosis, three years since my year of treatment and Iā€™m doing great!

Along with my lumpectomy, I had four rounds of A/C chemo, four rounds of Taxol and finished one full year of Herceptin and Perjeta.

I then had the standard four weeks of targeted radiation.

I know this all sounds incredibly daunting but itā€™s very doable. Just take it one week at a time and do the best you can.

I honestly feel fabulous. Currently I see my oncologist every six months along with having bloodwork and my annual screening mammogram.

Youā€™ll be okay. It just takes time. 🙏♥️🙏

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That is wonderful news! Thanks so much for sharing, it means so much to us newbies! I wish you many years of good health and abundant blessings!!!

Kind regards,
Diana

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@dianajp

That is wonderful news! Thanks so much for sharing, it means so much to us newbies! I wish you many years of good health and abundant blessings!!!

Kind regards,
Diana

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I have absolutely no doubt that youā€™ll get there too! ♥️

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I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I had a diagnostic mammogram followed by an ultrasound, resulted as BIRADS-4 and was told that day that I needed to have a biopsy. On 1/6/23 I had a stereotactic core needle biopsy. Pathology said negative for malignancy but I was diagnosed with ALH. The radiologist did not agree with pathology because I have pleomorphic calcifications in a linear distribution which he says are suspicious of malignancy. I now have to have a breast MRI and then an excisional biopsy. Everything is so delayed where I live, my biopsy isnā€™t until 3/6. I am 50 years old and my mother was diagnosed with breast cancer when she was 50. I am terrified, all the waiting is killing me. I feel stuck.

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@tcdarling

I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I had a diagnostic mammogram followed by an ultrasound, resulted as BIRADS-4 and was told that day that I needed to have a biopsy. On 1/6/23 I had a stereotactic core needle biopsy. Pathology said negative for malignancy but I was diagnosed with ALH. The radiologist did not agree with pathology because I have pleomorphic calcifications in a linear distribution which he says are suspicious of malignancy. I now have to have a breast MRI and then an excisional biopsy. Everything is so delayed where I live, my biopsy isnā€™t until 3/6. I am 50 years old and my mother was diagnosed with breast cancer when she was 50. I am terrified, all the waiting is killing me. I feel stuck.

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I am currently going through this right now. I had a diagnostic mammogram on Friday 1/20/23 and my results are BIRAD5 šŸ™ ive been crying so much. I am a single mother with 2 little ones and sometimes I'm ok but then i think about it and i start crying. I am waiting for my Dr to call me back.

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Hello, I am new here šŸ™‚

I had a diagnostic mammogram on Friday 1/20/23 and my results are BIRAD 5 šŸ™ ive been crying so much. I am a single mother with 2 little ones and sometimes I'm ok but then i think about it and i start crying. I am waiting for my Dr to call me back.

Before going to this past appointment i searched my symptoms and it looks like IBC (Inflammatory Breast Cancer) and unfortunately the tech added to my results "Diffuse skin thickening of the right breast which can be seen in the clinical setting of inflammatory carcinoma".

I am so sad and scared :'(

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I was diagnosed with ILC 3 months ago. Tumor was nearly 7cm. at largest dimension, ER+, PR+, HER2 -, stage 2A, grade 2, KI 67 1-4% (depending on tissue sampled), no genetic markers or family history.
I had a total mastectomy with axillary lymph node dissection 2 months ago. 2 out of 18 nodes had evidence of cancer but cancer contained in nodes.
I was told by one oncologist that IV chemotherapy was a ā€œno brainerā€ for my age and presentation of cancer. Another one told me that for lobular with such low KI 67 it would only be 5% beneficial as per the MonarchE study. Instead radiation, oral chemo (verzenio), Tamoxifen and Zolodex were recommended.
Iā€™m wondering how others have made this decision? I am experiencing terrible anxiety and difficulty making these decisions.
So grateful to all of you for sharing here.

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I was diagnosed at 69 years of aged. I had a 1cm lump but 5 out of 19 nodes had cancer. I had 16 chemo treatments and 25 radiation treatments. I also chose the mastectomy. My surgeon said he got all the cancer , with breast removal. I am now taking Letrazole for the next 5 or more years. . I was hesitant about taking this drug due to side effects. I have been on this med for over 5 months with minimal side effects. My oncologist told me there are at least 5 different meds he could give me( so there are options) donā€™t be afraid to try any of the meds because everyone is different and donā€™t effect everyone the same, and knowing there are options helps to ease the mind a bit, I have also learned that allot of the time it is the fillers in the drugs that effect the body, not the drug itself. I hope this helps you in making your decisions and I wish you all the best,

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@evmarz

I am currently going through this right now. I had a diagnostic mammogram on Friday 1/20/23 and my results are BIRAD5 šŸ™ ive been crying so much. I am a single mother with 2 little ones and sometimes I'm ok but then i think about it and i start crying. I am waiting for my Dr to call me back.

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Praying 🙏🏾

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I had the diagnosis of ILC on Nov. I had a lumpectomy and sentinel node dissection on the 18th of Nov. 1.7 cm mass..no node involvement ..sentinel removed..10 nodes checked ā€¦.margins clear. Mass was ILC ER+ PR- Her2- .Had balloon brachytherapy Dec12- 2x a day for 4 days. Fu next month with an oncologist to see about hormone blockers. I am 76 and will do my research to see about the blockers..have not heard good things.

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