1. < Breast Cancer

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.

evmarz | @evmarz | Jan 23, 2023

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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2 replies
evmarz | @evmarz | Jan 23, 2023
In reply to @tcdarling "I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I..." + (show)
@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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1 reply
tcdarling | @tcdarling | Jan 23, 2023

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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2 replies
lisakinpa | @lisakinpa | Jan 20, 2023
In reply to @dianajp "That is wonderful news! Thanks so much for sharing, it means so much to us newbies!..." + (show)
@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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dianajp | @dianajp | Jan 19, 2023
In reply to @lisakinpa "Hi Diana. It has been a little over four years since the date of my diagnosis,..." + (show)
@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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1 reply
lisakinpa | @lisakinpa | Jan 19, 2023

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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1 reply
dianajp | @dianajp | Jan 19, 2023
In reply to @lisakinpa "I was diagnosed with triple positive ILC breast cancer in December 2018 at the age of..." + (show)
@lisakinpa

I was diagnosed with triple positive ILC breast cancer in December 2018 at the age of 60 through an annual mammogram.

I chose to have a lumpectomy with radiation (clear margins and sentinel lymph node biopsy which was negative) and had four rounds of A/C chemo as well as Taxol and a full year of Herceptin and Perjeta.

Iā€™ve been on Arimidex for over 3 years and am doing very well.

Iā€™ll continue with my annual mammograms and have blood work every six months. ♥️

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Hi Lisa,
I am newly diagnosed with triple-positive ILC stage 1 with clear lymph nodes, lymphovascular, and margins. I recently had a lumpectomy. Will see my oncologist soon for my treatment plan. I was wondering how you're doing. 😊

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dolphina3 | @dolphina3 | Jan 17, 2023
In reply to @cindylb "@windyshores I too am interested in hearing more about how various doctors are following ILC for..." + (show)
@cindylb

@windyshores I too am interested in hearing more about how various doctors are following ILC for future metastasis. Since I opted for the bi lateral mastectomy (my first Lobular was in situ in the left breast and the second time was invasive in my right breast) I get visual exams every 6 months to 9 months but wondering if an MRI might be a good idea in the near future? They say I'll feel it on my chest wall but it's very hard to determine because I have various pains and bumps and lumps it seems, mostly from my lymphedema. Curious about this and hope people will share.

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I had invasive lobular 2a no lymph nodes. Had left side masectomy no reconstruction. Didn't want more surgery. They alternate every year with MRI because I have very dense breasts and it is harder to find on mammo alone. You might ask your team if that could be done for you. They also do a diagnosticmammogram we don't have 3D ones in the Maratimes Canada.
I get a visual check every 6 months and they felt something by arm pit which she thought was scar tissue but sent me to get an ultrasound to have in case something started to grow. Ultrasound turned out fine. So they know lumps and bumps and which are bad ones. I have fibrodenomas in right breast. I have a little lymphedema in arm pit and do espxcersizes to help with arm tightness. I hope you are doing well and I am two years out from treatment and it gets a little easier. I try not to worry to much and it helps knowing for 5 years a Dr sees you every 6 months. Take care

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selwena | @selwena | Jan 11, 2023
In reply to @ilcpfightee "Hi Selwena, Welcome but so sorry you had to join our club. I am currently in..." + (show)
@ilcpfightee

Hi Selwena,
Welcome but so sorry you had to join our club. I am currently in chemo too for a 1.96cm. Oncotype of 34 pleomorphic ILC. My chemo stated as TC but I had a toxic reaction and was switched to CMF. It isn't as common a regimen so if you don't mind me asking, have you had any side effects to CMF? I had one dose and they paused me because the damage from my toxicity to TC flared bad. I get my second dose dense treatment next week. Do you get neulesta with each cycle? How are you doing? It is so overwhelming at times. Hugs!!!!

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Hi trust me I agree. But so happy we have each other to share. The CMF does cause nausea. I drink 3 L of water the days off and the following 2 days to avoid cystitis and to assist in its clearance. I get my Neulasta the day after. There is mild bone pain with this.
I get a dose every other week.

SE: main mild nausea and tiredness

I hope this answers some of your questions. What were some of your side effects on TC

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Langold | @rarelybees2889 | Jan 11, 2023

Its good that you have a good doctor, that helps.
I know this is not easy and I am so sorry about your cancer. I am not sure if I am getting another MRI this year.
I'm allergic to both contrast dyes so its not a fun process during the allergy procedure beforehand.
Thanks for sharing...

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