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.

cobb | @cobb | Oct 24 8:40am
In reply to @marshgirl24 "Yesterday I saw my medical oncologist and she was very reassuring. I needed that since my..." + (show)
@marshgirl24

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.

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There is a wonderful FB group: Invasive Lobular Cancer Science and Support, just use the search button. Be aware that there are a bunch of pseudo groups selling all kinds of stuff to cancer patients! Also, please join the FB group for Mepitel Film. It is a non adhesive film to use throughout your radiation to reduce the risk of burned skin. It is in clinical trials and not yet FDA approved but can be purchased from Mayo or medical supply houses in Canada. It saved my skin😊

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chatteronron | @chatteronron | Oct 23 2:42pm
In reply to @marshgirl24 "Recovery going well. I think because my lymph nodes were not involved, my arm feels pretty..." + (show)
@marshgirl24

Recovery going well. I think because my lymph nodes were not involved, my arm feels pretty good. I've made an effort to get out and walk. 👍

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That’s great to hear. I hope your recovery continues to go well and you can move on to the next phase.

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marshgirl24 | @marshgirl24 | Oct 23 2:09pm
In reply to @chatteronron "So glad to hear your oncologist is so knowledgable and reassuring. How is your surgery recovery..." + (show)
@chatteronron

So glad to hear your oncologist is so knowledgable and reassuring. How is your surgery recovery going?

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Recovery going well. I think because my lymph nodes were not involved, my arm feels pretty good. I've made an effort to get out and walk. 👍

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1 reply
alibee | @alibee | Oct 23 9:36am
In reply to @chatteronron "Thank you so much! Sometimes my brain gets overloaded with all the new info but I..." + (show)
@chatteronron

Thank you so much! Sometimes my brain gets overloaded with all the new info but I still need to function in my daily life.
I am curious to hear if others with this BC subtype had any signs or symptoms before diagnosis.
New waters for sure. Appreciate your encouragement.

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Good for you! It can be easy to lose yourself in this. My motto was keep moving forward! As for my symptoms, I had none. It was found during a routine mammogram, and I was told they were surprised it was even picked up. Stage 1A.

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chatteronron | @chatteronron | Oct 23 8:39am
In reply to @marshgirl24 "Yesterday I saw my medical oncologist and she was very reassuring. I needed that since my..." + (show)
@marshgirl24

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.

Jump to this post

So glad to hear your oncologist is so knowledgable and reassuring. How is your surgery recovery going?

REPLY
1 reply
chatteronron | @chatteronron | Oct 23 7:58am
In reply to @alibee "Sorry to hear you’ve joined our club! Those early days are nerve wracking and I feel..." + (show)
@alibee

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!

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Thank you so much! Sometimes my brain gets overloaded with all the new info but I still need to function in my daily life.
I am curious to hear if others with this BC subtype had any signs or symptoms before diagnosis.
New waters for sure. Appreciate your encouragement.

REPLY
1 reply
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)
@chatteronron

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!

Jump to this post

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.

REPLY
2 replies
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)
@chatteronron

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!

Jump to this post

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!

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1 reply
alibee | @alibee | Oct 22 4:46pm
In reply to @mjmac "Wishing you the best next week!" + (show)
@mjmac

Wishing you the best next week!

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Thank you so much!

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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)
@alibee

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!

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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!

REPLY
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