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.

Mentor
Lori, Volunteer Mentor | @loribmt | Jan 9, 2023
In reply to @selwena "I am 46 and we are going through a similar time" + (show)
@selwena

I am 46 and we are going through a similar time

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Hi @selwena, Welcome to Mayo Clinic Connect. I’m sorry to see you’re going through a similar breast cancer journey. Was your cancer recently diagnosed? Would you care to share your experience with other breast cancer members?

REPLY
1 reply
dolphina3 | @dolphina3 | Jan 9, 2023
In reply to @kwatson "I have recently been diagnosed with invasive lobular carcinoma in my right breast and it has..." + (show)
@kwatson

I have recently been diagnosed with invasive lobular carcinoma in my right breast and it has also been found in the closest lymph node near my right breast, verified by biopsy of breast and biopsy of lymph node. I have heterogeneous dense breasts. I am considered "high risk" because with dense breast getting clear pictures with a mammogram and identifying anything unusual is very difficult. For the last 5 years, I have had the 3d mammogram or tomosynthesis vs. a regular mammogram. I was on top of it, annual testing and additional testing when requested if something looked different from the 3d mammogram from the year before. I did everything right or everything my breast care specialists suggested/requested of me.

This screening was not enough to find my lobular cancer diagnosis before it traveled to my lymph nodes. There is so much more to be concerned about once the cancer travels outside of the breast.

In my opinion...I believe if I had annual MRI's the cancer would have been found earlier and potentially not spread to the lymph nodes. PLEASE, PLEASE, PLEASE advocate for yourself when it comes to breast care. Go the extra mile to get the breast cancer screening you feel is right for you. FYI...Getting insurance to pay for the MRI can be an issue so make sure you have your DR's on board and that they are willing to help push your insurance to cover the cost.

YES, lobby for the MRI.

I hope my story helps you and many others to get the MRI.

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Sorry about your journey and I hope everything goes well for you. . I also should have been a better advocate for myself. Age 67 mammo every year, very dense breasts. In 2021 a 5.7 mm lobular cancer, Triple Negative was found. 6 rounds of chemo masectomy because of chance for recurrence with both those issues, then 3 weeks radiation left breast. Zomeda infusion every 6months and check ups every 6 months. MRI every other year now and diagnostic mammo. 2 years out so far so good. The worry is there but I just want to live life and hope for the best. Thinking of you.

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selwena | @selwena | Jan 10, 2023
In reply to @loribmt "Hi @selwena, Welcome to Mayo Clinic Connect. I’m sorry to see you’re going through a similar..." + (show)
@loribmt

Hi @selwena, Welcome to Mayo Clinic Connect. I’m sorry to see you’re going through a similar breast cancer journey. Was your cancer recently diagnosed? Would you care to share your experience with other breast cancer members?

Jump to this post

Hi Lori, thank you so much for the warm welcome. I really wanted a forum to discuss.

I was diagnosed in November

3 weeks later had a bilateral mastectomy based on a biopsy of ILC (.5 cm on the right breast). Post mastectomy I learned that it was actually 1.5 cm with 1 node positive and no lymphovascular invasion, or no capsular invasion.

3 week after mastectomy I was started on CMF chemotherapy. I receive every two weeks given a dose dense regimen. The plan is to have radiation following this and hormone therapy and ovarian suppression.

I've received two doses of chemo, and I have six doses left.

The removed tumor was ER and PR + Her 2 -

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 10, 2023
In reply to @selwena "Hi Lori, thank you so much for the warm welcome. I really wanted a forum to..." + (show)
@selwena

Hi Lori, thank you so much for the warm welcome. I really wanted a forum to discuss.

I was diagnosed in November

3 weeks later had a bilateral mastectomy based on a biopsy of ILC (.5 cm on the right breast). Post mastectomy I learned that it was actually 1.5 cm with 1 node positive and no lymphovascular invasion, or no capsular invasion.

3 week after mastectomy I was started on CMF chemotherapy. I receive every two weeks given a dose dense regimen. The plan is to have radiation following this and hormone therapy and ovarian suppression.

I've received two doses of chemo, and I have six doses left.

The removed tumor was ER and PR + Her 2 -

Jump to this post

We’re happy you found Connect! This is a very welcoming forum and you’ll feel like you’re sitting around the kitchen table with old friends…all with on the same medical journey. From my experience it helps to know you’re not alone. I don’t have breast cancer but there are so many strong, courageous and amazing women here who will be able to offer encouragement and answer questions for you.

@windyshores @elliej @anjalima @callalloo and several other members are active in the discussion link below. Feel free to pop into any conversation!

-Invasive ductal cancer
https://connect.mayoclinic.org/discussion/invasive-duct-ca/

~~~~~~
@beautybldr has the same diagnosis and posted this discussion in August.

-HER2- and ER/PR+
https://connect.mayoclinic.org/discussion/her2-and-erpr/

How are you doing on the chemo? Any side effects such as sore mouth or nausea?

REPLY
1 reply
ilcpfighter | @ilcpfightee | Jan 10, 2023
In reply to @selwena "Hi Lori, thank you so much for the warm welcome. I really wanted a forum to..." + (show)
@selwena

Hi Lori, thank you so much for the warm welcome. I really wanted a forum to discuss.

I was diagnosed in November

3 weeks later had a bilateral mastectomy based on a biopsy of ILC (.5 cm on the right breast). Post mastectomy I learned that it was actually 1.5 cm with 1 node positive and no lymphovascular invasion, or no capsular invasion.

3 week after mastectomy I was started on CMF chemotherapy. I receive every two weeks given a dose dense regimen. The plan is to have radiation following this and hormone therapy and ovarian suppression.

I've received two doses of chemo, and I have six doses left.

The removed tumor was ER and PR + Her 2 -

Jump to this post

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!!!!

REPLY
1 reply
beautybldr | @beautybldr | Jan 11, 2023
In reply to @loribmt "We’re happy you found Connect! This is a very welcoming forum and you’ll feel like you’re..." + (show)
@loribmt

We’re happy you found Connect! This is a very welcoming forum and you’ll feel like you’re sitting around the kitchen table with old friends…all with on the same medical journey. From my experience it helps to know you’re not alone. I don’t have breast cancer but there are so many strong, courageous and amazing women here who will be able to offer encouragement and answer questions for you.

@windyshores @elliej @anjalima @callalloo and several other members are active in the discussion link below. Feel free to pop into any conversation!

-Invasive ductal cancer
https://connect.mayoclinic.org/discussion/invasive-duct-ca/

~~~~~~
@beautybldr has the same diagnosis and posted this discussion in August.

-HER2- and ER/PR+
https://connect.mayoclinic.org/discussion/her2-and-erpr/

How are you doing on the chemo? Any side effects such as sore mouth or nausea?

Jump to this post

I am not taking chemo or radiation, i was put on tamoxifen, made me so sick, i refused to take it. i am to see oncologist the end of this month. she ask about me trying letrozole, i will try it but if i have issues with it, i will quit taking it. I am 80 years old and my cancer is stage 1 and at this stage of my life i am looking for quality of life. I am having good days, have been off tamoxifen for 2 months and feel good.

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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...

REPLY
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!!!!

Jump to this post

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

REPLY
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

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.

I’ve been on Arimidex for over 3 years and am doing very well.

I’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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