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How many are Stage Iv Lobular?

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ddil
ddil Member Posts: 92

I'm just checking to see how many are Stage IV Lobular? How long and how are you doing?

It's a bit different than ductal.it seems Lobular is harder to find on scans. I’m new so looking to get any advice and tips.

TIA

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  • BevJen
    BevJen Member Posts: 2,341
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    Original diagnosis of LCIS in 1990. Invasive lobular diagnosed in 2003. Single site metastasis in 2006, rendering me stage 4. Pretty uneventful until 2018, when tumor markers started to rise.

    You are correct that lobular is harder to find. My original cancer didn't show up on a regular mammo. They had just started (in 2003) to use MRIs to look for breast cancer -- I remember that my doc had to get special permission from my insurance and the hospital to use that modality on me. That found it.

  • ddil
    ddil Member Posts: 92
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    all my mammos were fine. I found a small lump. Then scans and stage IV BONE mets. Hope you’re doing well.

  • BevJen
    BevJen Member Posts: 2,341
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    You will find, I think, that there are a ton of lobular folks on the Stage IV forums. Hopefully some more people will weigh in here. I'm doing okay, but since 2019, I'm had a few wrinkles.

  • ddil
    ddil Member Posts: 92
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    thank you for the reply. In the last two months when I received my diagnosis I’ve been learning so much about Lobular. It’s helpful to learn from others and their experiences. Seems they don’t have treatment or scans specific to lobular. Praying I get a good run on Ibrance and Letrozole. I’m ER/PR+ HER- Mets bone and lymph in armpit with CHEK2 mutation.

  • divinemrsm
    divinemrsm Member Posts: 6,008
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    ddil,

    I was in my early 50s when I was diagnosed with ilc mets to the bones from the start. Here’s my story:

    I had gotten an annual mammogram for at least ten years when one morning I felt a gnarly thickening on the underside of my breast. It was December 22, 2010. I’d just had a mammo on December 12. As I was about to call the mammo clinic, they called me to say they found an “asymmetry” on my mammogram. I said, “I found a lump today.” They said, “No, not a lump. Asymmetry.” I firmly restated there was a lump. They told me to come in immediately.

    The next several weeks (slowed down by the holidays) were spent getting a biopsy, numerous doctor/oncologist/surgeon appointments and additional tests and scans. Then the stage iv diagnosis: bone mets to hip, rib, scapula.

    In my opinion, my last mammogram applied so much pressure to the breast that it made the thickening pronounced. Since I was stage iv from the start, it had been there hiding for awhile.

    I've had some progression over the years but early on I learned to look at this as living with metastatic breast cancer, not dying from it. I have ups and downs but manage to live a good life. There are no guarantees, but with bones mets and the advantage of Ibrance, you could do well for a long time, so be open to that! Ibrance wasn’t even around when I was first diagnosed. I wish you all the best.

  • ddil
    ddil Member Posts: 92
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    Devinemrsm,

    Thank you . I’m wondering how common DeNovo is with lobular. Your story is very similar to mine. All scans clear. I found a tiny lump under my breast. After many scans, bone Mets and 4 lymph nodes in my armpit. I’ve always been health proactive so this was a shock. Hoping I can get long term positive results. I’m 61 I changed my diet and started Exercising daily on the treadmill going to add rowing I think to strengthen my body. You’re an inspiration of hope. Thank you for making my day.

  • mocogram
    mocogram Member Posts: 94
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    ddil, In 2016 I found an unusual thickening in my left breast. Went to the doctor and she couldn't find anything. But, after several mammograms and a biopsy I was diagnosed with ILC. Had a lumpectomy, went through chemotherapy and radiation therapy. After treatment was over, I was on letrozole and zometa.

    Everything seemed fine until last May when I was found to have bone Mets, primarily in my spine. I started on Ibrance in Sept. But, a followup scan found some progression and a Caris test found an ERBB mutation. So, in Dec. I was switched to xeloda, tukysa and kanjinti (a biosimilar to Herceptin). I have a scan tomorrow and I'm praying the meds I'm on now are working.

    I hope you do well on Ibrance.


  • ddil
    ddil Member Posts: 92
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    I hope you have clean scans with no progression.

  • nkb
    nkb Member Posts: 1,561
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    I was diagnosed at 58- I never had an abnormal mammogram except dense breasts. I had a lump- told it was normal (neg US and mamma) 6 months later had another lump-normal US and mammo- I had a biopsy- ILC- then had an MRI - multiple cancers in both breasts, multiple + lymph nodes. 5 years later- bone mets.

    My bone mets show up on PETs not everyones do. good luck

  • ddil
    ddil Member Posts: 92
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    monogram: I hope you got good results on your scans!

  • kbl
    kbl Member Posts: 2,684
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    Hi, ddil. We. get to talk a lot through Zoom, and you know my story. I am here with the rest of the lobular ladies waving hi.

    MoCoGram, please keep us posted on scan results.

  • mozuke1
    mozuke1 Member Posts: 39
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    I'm relatively new, too. Diagnosed in Oct 2021, de novo with bone mets. I found a lump myself, but hadn't had a mammogram in a while. It seemed to show up out of nowhere. My mets showed up on PET scan and MRI. I mean, at least I hope there aren't more that we can't see! I was originally thought to be oligometestatic and so plan was for chemo, mastectomy and SBRT for bone mets, until later MRI showed too many mets to radiate. My MO recommended continuing with chemo. I finished a couple of weeks ago and will start on Letrozol next week and Kisqali as soon as I heal from next month's BSO. I'm 49, premenopausal and BRCA1 positiv

  • ddil
    ddil Member Posts: 92
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    hi KBL!!

    Yep is lobulars need to stick together!!

  • ddil
    ddil Member Posts: 92
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    Mozuke1

    I think your story is common. I was the same found it myself after clean mammos. Bone Mets and lymph for me. Much like you I wonder if there is anything hiding. I was not offered Chemo or any surgery. Just Ibrance and Letrozole and xcheva shots. We all wonder if the sneaky cancer is hiding.. it’s very unnerving. But there are wonderful ladies who have been on this roller coaster for awhile. Have you had any more scans

  • mozuke1
    mozuke1 Member Posts: 39
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    Yes ddil, I had a follow up PET scan (3/8/22)at the end of my course of chemo. All the spots that had been visible in my original scan were gone. My dr said she was very encouraged. She has great hopes for me and Kisqali. I hate that I have no idea how my body will react and how long I’ll be on it and that there’s nothing I can do. So frustrating.

    My MO is on the scientific advisory board of the Lobular Breast Cancer Alliance.


  • ddil
    ddil Member Posts: 92
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    mozuke1

    Great news that nothing is visible! I hope to be like you❤️. I agree you just don’t know if the meds will work a year or 7 years. Praying for longevity for you and all of us.

  • mocogram
    mocogram Member Posts: 94
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    kbl, thanks for asking, I met with MO this morning and found out scan showed no progression and the previously identified mets are stable. Whoo hoo! I'll take it.

  • kbl
    kbl Member Posts: 2,684
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    MoCoGram, that’s wonderful news. Congratulations.

    I am one of the few who never felt a lump and am not only de novo but occult. They’ve never found the cancer in my breasts.