Living with Lobular Breast Cancer: A Patient’s Perspective | Lobular Breast Cancer Event 2023

[@clevelandclinic]

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[@KristinHowe-pz4gm]

Thank you for your story. I was diagnosed 8 years ago yesterday, Stage 2 ductal.Come to find out 8 months after my first biopsy, I found out I had 1 very large lobular tumor and six more smaller ones determined by my Oncotype biopsy (no ductal). I felt like I was in a coma for a year. The only thing I could control was what I ate. I didn't sleep, I didn't have doctors I could talk to (I was in a clinic setting where they just don't have to time to talk or take phone calls). I focused on many holistic options combined with western medicine. I didn't want people to know I had been diagnosed and told my family but only told a few neighbors and friends. My preference has been not to discuss it at all or let anyone know I had it. You have inspired me to "give back" and be someone who can help make other's journeys a little less scary. While cancer certainly doesn't define me, I now feel that i owe others some of my knowledge, considering how fortunate I am to be healthy years later. Sending you love, peace, and health. Thank you for your brave and inspiring talk.

[@ballerbrosmedia]

Thank you for sharing your experience. Wishing you all the best healing! 🥰

[@mariehollinger5708]

I was just diagnosed a week ago with ILC, thank you so much for your words! "Faith and fear cannot be in the same house" That will be what gets me through this! Thank you!!!!!

[@RoseGarden86]

My sister was diagnosed back in October. She is scheduled for mastectomy Jan 02. How far along are you in diagnostic process? I'll keep you in my prayers 🙏

[@shelleyn2884]

I was diagnosed with Lobular Oct. 2022. 2.4 cm tumor. Node negative. I chose double mastectomy. BRCA negative. No gene mutations found at all. But my mom had breast cancer 3 times from age 54 to 80. Ductal the first 2 times 20 years apart and then lobular at 80. She is healthy at 87 now. When mine was found on screening yearly mammo thank goodness, my sister rushed to go get a mammogram as she rarely got one and she had breast cancer too. Early stage 1 ductal. I am 58 currently and take aromatase inhibitor pill daily. Get your mammograms everyone. Don't blow them off. They will save your life

[@TheLovelyHeadache]

I wish they would screen all ages. I just got diagnosed at 29 but I’m almost positive I’ve had it since 27. Even at my wellwoman exam, my doctor referred me to have a mammogram and ultrasound - both facilities I contacted said they refuse to do a mammogram due to my age. When I actually got to the appt they took one look at the ultrasound and said we’re doing the mammogram and having me come in next week for a biopsy.

[@terib.7139]

Thank you so much for this. I was just diagnosed a week ago and am going through all of the emotions. Depression, anger, shock, acceptance, rinse and repeat. It’s so helpful to hear others stories.

[@TheLovelyHeadache]

Hey Teri! I was just diagnosed in February 2024, if you want to chat let me know! I’m feeling all the same too 🫂

[@mariehollinger5708]

Thank you so much for your presentation! I was just diagnosed a week ago and of course very scared as I found out more information. "Faith and fear cannot live in the same home" will be the phrase that I will need to repeat over and over as I begin this journey. Thank you again!

[@RoseGarden86]

Great video. My sister was diagnosed with ILC last month. Her tumor is also fairly large ( about 5.5cm ). She is scheduled for double mastectomy Jan 02. Please keep her in your prayers & any advice or recommendations will be appreciated

[@cmsweetsound]

My sister got diagnosed too this past spring. I’m praying for you all.

[@RoseGarden86]

@@cmsweetsound Thank you. I`ll be praying for your sister too. How is she doing now ? Is she still in active treatment ?

[@cmsweetsound]

@@RoseGarden86 Thank you. My sister finished 4 rounds of chemo, this Friday concludes her 20 rounds of radiation. Next her oncologist is recommending a chemo pill for 2 years and a hormone blocker for 10 years. How is your sister?

[@RoseGarden86]

@@cmsweetsound glad to hear your sister is almost done with active treatment. My sister is doing ok. Thank you for asking. She is scheduled for double mastectomy Jan 02. She is still at the beginning of the journey. That's interesting. Never heard of chemo pills before. Learning something new every day 🙂 If you don't mind me asking what Stage was your sister when she was diagnosed?

[@cmsweetsound]

@@RoseGarden86 I know all the feelings you’re going through. My sister is stage 2 with two lymph nodes that were positive. Thank goodness she had a very good breast surgeon.

[@jamieg3009]

Thank you so much for sharing your story

[@campanulae4]

Me too: I lived and live a healthy lifestyle. Nonetheless I got BC twice in my 40ies. No family history of cancer at all.

[@alatheacook6328]

I was just diagnosed 3 months ago. Had a unilateral mastectomy and now in chemotherapy sessions. Is there a way to get this woman’s phone or email to chat for support? She is so uplifting to me as I, too, have been healthy my whole life with no family history. Thanks for your uplifting narrative. 🩵💚💪