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 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 -

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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?

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1 reply
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?

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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
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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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

Jump to this post

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?

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1 reply
selwena | @selwena | Jan 8, 2023
In reply to @kware75 "Hi, I am 47, I have been getting mammograms and ultrasounds since my 30s due to..." + (show)
@kware75

Hi, I am 47, I have been getting mammograms and ultrasounds since my 30s due to dense breast tissue. I had ultrasound guided biopsies in 2019 on both breasts, all results benign. 3 hydramarkers in right, 1 in left. Was on 6 month plan for mri and mammogram for a year. Then moved me back to one a year mammos. Fast forward to July 2022, noticed a different feeling than my normal cysts in left breast and noticed slight dimpling near nipple only when my arm was raised above my head. Was referred for ultra and mammo because my year wasn't up yet. Thankfully they got me in quickly and referring doctor also put in a referral for breast surgeon 🙏. Ultra snd mammo results: radiologist said they didn't see any changes. I kept appt with breast surgeon who said he also didnt see anything of concern but ordered mri due to dimpling. Mri showed suspicious. Did Stereotactic biopsies, Diagnosed with ILC August 22, 2022. Sneaky cancer...hard to detect...curable...treatable, slow growing, best kind of breast cancer you can get, no signs that it's in the lymph nodes..all those things I held on to. They determined it was 5.9 cm before surgery. 5.9?! Cm!! That's huge! What??? I had bi lateral mastectomy with beginning reconstruction (expanders) on October 13th. My pathology report was a shock to me. Cancer was 55mm, smaller than what they determined; great news! Then I kept reading ..carcinoma present at margins, sentinel node micrometatasis. My heart sunk and fear, anger, confusion overcame me. Final diagnosis: ILC stage 1b, low grade, micrometatasis. Oncology recommends 5 months chemo, followed by, 33 radiation treatments, endocrine therapy, and removal of ovaries. I am so overwhelmed today. I don't know what to do. I want the cancer killed, and also want quality of life...surprise. If anyone can share their journey, the choices they made for treatment, what they have gained or lost because of treatments, and how they affect/affected survivorship, I would be so grateful. ❤️ also, forgot to mention, estrogen receptor positive, but not her2.

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I am 46 and we are going through a similar time

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1 reply
rebecca55 | @rebecca55 | Dec 24, 2022
In reply to @amolson "Wow!! It is amazing to hear us all feeling the same way!! I have all those..." + (show)
@amolson

Wow!! It is amazing to hear us all feeling the same way!! I have all those same feelings too! I watched my mother die horribly from lung cancer that metastasized to her brain and within 6 months my dad got pancreatic cancer and died miserably and broke my heart to watch!! I too want to be proactive and cut out whatever might progress to that!! It is just so scary!!!

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Same here! I watched my sister who had stage 4 breast cancer at age 48. It was terrifying! She had a lumpectomy and then was prescribed Tamoxifen. I need to make a decision with alh. I am a healthy 67 years of age. Going to an Oncologist in January. Think I want a double mastectomy.

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amolson | @amolson | Dec 24, 2022

Wow!! It is amazing to hear us all feeling the same way!! I have all those same feelings too! I watched my mother die horribly from lung cancer that metastasized to her brain and within 6 months my dad got pancreatic cancer and died miserably and broke my heart to watch!! I too want to be proactive and cut out whatever might progress to that!! It is just so scary!!!

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1 reply
hobo | @hobo | Dec 23, 2022
In reply to @rebecca55 "I have been diagnosed with alh and had tissue removed. Now deciding on more treatment. I..." + (show)
@rebecca55

I have been diagnosed with alh and had tissue removed. Now deciding on more treatment. I am so scared that since it was removed. Scared that it is just going to go to a deeper tissue and cause cancer.

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Valid fears. I’m almost right in sync with you sister!! Right there with you. I can certainly relate. I don’t know what insurance covers, not that I would boil it down to cost, but I’m just curious if insurance will require you and me both to take step by step measures before they’d allow for more aggressive approach? Questions to ask. Mulling to do.

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rebecca55 | @rebecca55 | Dec 23, 2022
In reply to @amolson "SOOOOOooooo appreciative that you took your personal time to respond. YES...I am VERY thankful at this..." + (show)
@amolson

SOOOOOooooo appreciative that you took your personal time to respond. YES...I am VERY thankful at this point it is NOT cancer as I KNOW some of the hell others have been and are going through but I too am like you and want to get a step ahead of it IF at all possible because once that rotten cancer grows it never stops!!! My specialist said that we should go ahead and remove what they say (only the size of a walnut so I know I am much luckier than most) so they can do a full pathology analysis on everything they removed. As that let's wait and see IF what you have grows more and then we can always remove it just scares me. I feel like a ticking time bomb just waiting and wondering if it is turning into cancer while we are waiting to see :(. It is good to hear that someone else wants to stay a step ahead like I do. THANK YOU again for your input and I HOPE NOTHING but the BEST for you!!

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I have been diagnosed with alh and had tissue removed. Now deciding on more treatment. I am so scared that since it was removed. Scared that it is just going to go to a deeper tissue and cause cancer.

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1 reply
hobo | @hobo | Dec 23, 2022

It can be frustrating contemplating the options. Prophylactic mastectomy, although scary, somehow gives me peace of mind that I’d be doing something to remove future possibility of anything coming to get me later. My Dad had prostate cancer years ago and he took baby steps in the process trying not to be too over reactive and spare removal. He did not win his battle. I’m coming from a daughters perspective of his cancer path. I don’t want to re-live that. I have Pre-cancer. It is different, this I realize. I know I sound a little crazy, but our life experiences make us who we are. Helping him through his battle I am finding gives me courage to contemplate taking the steps that others may not. I’m not saying I’ve decided I’m going to have a mastectomy, I just found out less than 7 hours ago about my biopsy results. I will meet with my breast specialist on Tuesday to discuss the direction that is right for me. I hope you will soul search and ask your doctors and yourself the tough questions too. It’s such a lonely feeling. My husband thinks I’m jumping the gun…I don’t know, I just don’t know? It’s nice having a forum like this where we can talk openly and freely. I hope I am not offending anyone by doing so. It is not my intension to scare or make anyone question what is right for them. I’m remembering testimony from Trump’s press secretary Kayleigh-Mcenany and actress Angelina Jolie. Both had double mastectomies. I’m going to do lots of research and listen to my doctor and decide what is right for me. Every story is inspiration to be strong. If you chose not to take dramatic measures, I would think about getting genetic testing to see what you are dealing with. It can also allow you to get a baseline. I’d love to keep the dialog going as you explore options.

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