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.

tessspike | @tessspike | Aug 4, 2023
In reply to @noodle "Why can’t I find a medical oncologist who is knowledgeable and focusing on lobular breast cancer...." + (show)
@noodle

Why can’t I find a medical oncologist who is knowledgeable and focusing on lobular breast cancer. I’m just getting very tired of hunting.

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I have great confidence in my oncologist although she would not consider herself a specialist in lobular. I imagine that any breast oncologist at a respected medical center would be as thoroughly educated in lobular as in ductal and inflammatory. Maybe I'm overly optimistic, but my care has been outstanding. Check out their education and training. Ask questions. Then trust! Every case is different. It will be about the attention and time they give you!

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1 reply
noodle | @noodle | Aug 4, 2023
In reply to @tessspike "I have great confidence in my oncologist although she would not consider herself a specialist in..." + (show)
@tessspike

I have great confidence in my oncologist although she would not consider herself a specialist in lobular. I imagine that any breast oncologist at a respected medical center would be as thoroughly educated in lobular as in ductal and inflammatory. Maybe I'm overly optimistic, but my care has been outstanding. Check out their education and training. Ask questions. Then trust! Every case is different. It will be about the attention and time they give you!

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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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3 replies
tessspike | @tessspike | Aug 4, 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 would hope any good oncologist would be continuing his or her research and study as new information is revealed. I know mine does. But yes, there is a lot to keep up with and our cancer is different. Praying that you find one whom you trust!

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jmh22 | @jmh22 | Aug 4, 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 think blind trust is key to your statement. Do your research and trust your intuition. Blind trust in someone else may be misplaced.

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Sue Ellen Murrey | @semurrey | Aug 6, 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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I'm sending big hug as I recently finished radiation for a 2cm ILC (lumpectomy, 58yrs). I'm glad your mammo found the reoccurance as lobular is tricky to spot. Have you been followed annually with mammos? My onco at Dana Farber doesn't scan for a year after surgery and I am very anxious that even a diagnostic mammo won't pick anything up in October. I am on Letrozole which I'm thinking you also were prescribed. I know it is jarring to consider breast removal but if you faith in your surgeon it might be best option! oxoxo

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jlimb | @jlimb | Aug 9, 2023

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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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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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
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 @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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