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.

hollyng | @hollyng | Sep 7, 2023
In reply to @hollyng "I had no symptoms either. It showed as a distortion on the mammogram. Had a biopsy..." + (show)
@hollyng

I had no symptoms either. It showed as a distortion on the mammogram. Had a biopsy and it is conclusive for invasive lubular carcinoma. They also found a second area of distortion in which their biopsy today.

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Thank you.

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hollyng | @hollyng | Sep 7, 2023
In reply to @jlimb "Has anyone beed faced with a recurrence, after diagnosis and treatment for early stage ILC? Having..." + (show)
@jlimb

Has anyone beed faced with a recurrence, after diagnosis and treatment for early stage ILC? Having recently heard that invasive lobular cancer can "be sneaky" and hard to detect, I admit to having some potential concerns about what to expect. I had no symptoms with original diagnosis. (Just found on a yearly mammogram). Thanks for sharing any insight/experience.

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I had no symptoms either. It showed as a distortion on the mammogram. Had a biopsy and it is conclusive for invasive lubular carcinoma. They also found a second area of distortion in which their biopsy today.

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1 reply
Sue Ellen Murrey | @semurrey | Sep 6, 2023
In reply to @jlimb "Has anyone beed faced with a recurrence, after diagnosis and treatment for early stage ILC? Having..." + (show)
@jlimb

Has anyone beed faced with a recurrence, after diagnosis and treatment for early stage ILC? Having recently heard that invasive lobular cancer can "be sneaky" and hard to detect, I admit to having some potential concerns about what to expect. I had no symptoms with original diagnosis. (Just found on a yearly mammogram). Thanks for sharing any insight/experience.

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Hi! I'm so with ya as I have my first scan this October after November 2022 surgery for ILC that was found on mammo ( barely as it was "questionable and ultrasound showed nothing but MRI picked up 1.8cm). I hope I don't have to beg for MRI or least alternating mammo and then 6 month later MRI!! I will update and good luck!

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1 reply
ilc67 | @ilc67 | Sep 5, 2023
In reply to @erthling "I was 1st diagnosed with ILC in 2017. I had a lumpectomy followed by 32 radiation..." + (show)
@erthling

I was 1st diagnosed with ILC in 2017. I had a lumpectomy followed by 32 radiation treatments. All was good fast forward July 17 2023 a regular mammogram followed by ultrasound, biopsy and MRI and I have a recurrence of ILC. Now facing bilateral mastectomy just waiting on a date. I find myself wondering why me. What if I forget the cancer and do nothing. I really dont want my boobs cut off.

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Hello @erthling ,
What a horrible setback after all you went through. I am so sorry.
2017, for me, was also the year they saw "something" on my mammo in the exact spot they saw "something" in 2012 but dismissed. ILC does not have the benefit of being easily spotted like IDC and that scared the heck out of me. I scheduled a double mastectomy ASAP. I did this after learning how it spreads undetected, like mine did for years and reading stories like yours. Two Dr's wanted to do a lumpectomy. NO WAY! Post-mastectomy pathology revealed a 2nd area of Lobular never seen. I was so happy I made that decision.
I understand the idea of losing your breasts is unimaginable. I found myself thankful that this cancer landed on a body part I don't need to survive. Wasn't pancreas or liver. Our family and friends love us for US, not the shape of our upper bodies. It's about surviving.
My husband sees my 2 big scars and he says it reminds him how lucky he is I'm still here.
Best to you in making this decision. We have nothing without our health.

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jlimb | @jlimb | Aug 16, 2023

Has anyone beed faced with a recurrence, after diagnosis and treatment for early stage ILC? Having recently heard that invasive lobular cancer can "be sneaky" and hard to detect, I admit to having some potential concerns about what to expect. I had no symptoms with original diagnosis. (Just found on a yearly mammogram). Thanks for sharing any insight/experience.

REPLY
3 replies
tessspike | @tessspike | Aug 10, 2023
In reply to @windyshores "Sorry Metzger!" + (show)
@windyshores

Sorry Metzger!

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Thank you! Yes. At least I copied and pasted it right in the link 🙂

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windyshores | @windyshores | Aug 10, 2023
In reply to @tessspike "I just read this comment on a different threat, apparently there is a lobular specialist at..." + (show)
@tessspike

I just read this comment on a different threat, apparently there is a lobular specialist at Dana Farber.
"Lobular can be harder to detect, I was told. There is a doctor at Dana Farber who specializes in lobular- Otto Metzer MD- and he has a good video online if you can find it."
https://www.dana-farber.org/find-a-doctor/otto-metzger/

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Sorry Metzger!

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1 reply
tessspike | @tessspike | Aug 10, 2023
In reply to @noodle "There is just so much new information and research coming out on lobular. I just don’t..." + (show)
@noodle

There is just so much new information and research coming out on lobular. I just don’t know if every medical oncologist can keep up with it. Blind trust has not thus far, served me well on my cancer journey.

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I just read this comment on a different threat, apparently there is a lobular specialist at Dana Farber.
"Lobular can be harder to detect, I was told. There is a doctor at Dana Farber who specializes in lobular- Otto Metzer MD- and he has a good video online if you can find it."
https://www.dana-farber.org/find-a-doctor/otto-metzger/

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1 reply
lisakinpa | @lisakinpa | Aug 10, 2023
In reply to @jlimb "I'm grateful for the discussions about ILC. It is helpful to know more about the experiences..." + (show)
@jlimb

I'm grateful for the discussions about ILC. It is helpful to know more about the experiences of others with this diagnosis. I had a lumpectomy and radiation for ILC (Stage 1) in the spring of 2022. On Tamoxifen for a little over a year with no problems, but was just switched to Anastrozole in July. (Onco said "better effectiveness" with hormone+ ILC). Hoping for minimal side effects but it seems like a season of " wait and see". Trying not to be anxious and be grateful for each good day. It's a journey...

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Hello! It sounds like you’re doing well. I was diagnosed almost five years ago and have been on Anastrozole for four years (of five) with little side effects. ♥️

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