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.

ksmitty | @ksmitty | 2 days ago
In reply to @staceycholmes99 "Hi, I'm 52 and was diagnosed with stage 1 ILC in my left breast. After a..." + (show)
@staceycholmes99

Hi, I'm 52 and was diagnosed with stage 1 ILC in my left breast. After a MRI they realized it was 5.8 cm wide and classified it as stage 3. I'm hormone positive but HER2 negative. they originally recommended a lumpectomy and reconstruction, but now say that is not an option and I need a mastectomy and radiation. Is it normal for them to get the size so wrong? I'm very nervous about the radiation and the hormone blocker. I just cant help feel like I will never feel normal again.

Also was anyone else so tired before being diagnosed? Is this a symptom?

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Hello, I’m 55 and was diagnosed the day before thanksgiving with lobular breast cancer. Doc said the thought it would be stage 1 but the MRI showed it much bigger than expected. It’s 5ml, so stage 2. I’m also hormone positive and HER2 negative. I meet with the chemo doc tomorrow. I’ll have 6 rounds of chemo then a mastectomy. I’m probably going to go ahead and just do both so I (hopefully) won’t have to go through this again. Any thoughts on this? No one has even said “radiation” yet.
I have not been tired nor do I have any symptoms at all. I was absolutely astonished when I was diagnosed.
I’m thanking God every day that it was picked up on the MRI and for all the advances made in breast cancer treatment.

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lilacs777 | @lilacs777 | 2 days ago

@staceycholmes99 MRI often overestimates size so there is still hope that the actual size IRL is smaller. If its visible on ultrasound, you can ask them to correlate to that to see among all the imaging what may be the real size. But unfortunately they won't really know until after surgery, that is the only real way to get the answer. Lumpectomy is always trickier with lobular b/c they can't see it well on imaging and the goofy way it grows.

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