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.

marshgirl24 | @marshgirl24 | Oct 18 1:53pm

Hi, I'm newly-diagnosed and interested in following this lobular subgroup and wonder if you are still active?

alibee | @alibee | Oct 18 9:48pm

In reply to @marshgirl24 "Hi, I'm newly-diagnosed and interested in following this lobular subgroup and wonder if you are still..." + (show)

Hello, and I’m very sorry to hear about your diagnosis. I’m about a year and a half past my diagnosis and doing well. As far as I know, this subgroup is still active. If you look back at previous posts, you might find some answers to questions you have. Another resource that’s helped inform me is the Lobular Breast Cancer Alliance. Wishing you all the best!

marshgirl24 | @marshgirl24 | Oct 19 8:02am

Thanks so much! I am reading past posts now to learn more. My lumpectomy was last week and next week I have an appointment with a medical oncologist. I’m beginning to wonder why my dr went directly to a surgeon. Just need to learn more about this lobular diagnosis. Thx for suggesting that Alliance.

alibee | @alibee | Oct 19 10:17am

In reply to @marshgirl24 "Thanks so much! I am reading past posts now to learn more. My lumpectomy was last..." + (show)

That was my path as well, straight to the lumpectomy. I had 5 days of targeted radiation after that and now I’m on the aromatase inhibitor, Letrozole, which I’ve tolerated really well. The whole process takes some time, start to finish which surprised me. Next week I have my one year follow up and can ask the questions I have about our specific BC.

marshgirl24 | @marshgirl24 | Oct 19 12:47pm

In reply to @alibee "That was my path as well, straight to the lumpectomy. I had 5 days of targeted..." + (show)

Yes, that’s what they’re suggesting for me. Thanks for mentioning Letrozole. One thing at a time but I’m not looking forward to taking something. However, I realize that I have no choice (to discourage reoccurrence) and I’m grateful to have it caught early. I guess I have to heal before the radiation part.

mjmac | @mjmac | Oct 20 8:38pm

In reply to @alibee "That was my path as well, straight to the lumpectomy. I had 5 days of targeted..." + (show)

Wishing you the best next week!

chatteronron | @chatteronron | Oct 22 4:25pm

In reply to @alibee "Hello, and I’m very sorry to hear about your diagnosis. I’m about a year and a..." + (show)

Hi, Thank you for the LBC Alliance resource. I am newly diagnosed with Lobular Breast Cancer and seeing a breast surgeon next week. The Oncologist said I could contact her after I have surgery. There is not a lot of literature on this type of cancer so I’m at the beginning after getting my biopsy results after mammograms. Thanks!

alibee | @alibee | Oct 22 4:46pm

In reply to @mjmac "Wishing you the best next week!" + (show)

Thank you so much!

alibee | @alibee | Oct 22 4:50pm

In reply to @chatteronron "Hi, Thank you for the LBC Alliance resource. I am newly diagnosed with Lobular Breast Cancer..." + (show)

Sorry to hear you’ve joined our club! Those early days are nerve wracking and I feel for you. Hang in there and just take it a day at a time. Wishing you the best as you navigate these new waters!

marshgirl24 | @marshgirl24 | Oct 23 5:22am

In reply to @chatteronron "Hi, Thank you for the LBC Alliance resource. I am newly diagnosed with Lobular Breast Cancer..." + (show)

Yesterday I saw my medical oncologist and she was very reassuring. I needed that since my general practitioner had been kind of discouraging about the lobular part. The medical oncologist has been practicing for about 12 years and most of her practice is ductal or lobular cancer. When I asked her about reoccurrences With lobular, she said that no she doesn’t see that. I’ll start on one of the medication‘s after my radiation but I need to get a little further out from my surgery.