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.

lisakinpa | @lisakinpa | Dec 6, 2022
In reply to @semurrey "May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just..." + (show)
@semurrey

May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just found out negative node - very relieved! I'm 57yrs - 1.8 cm and grade 2 with margins positive for atypical which I guess is fine as surgeon said no need for additional surgery. Next appt in 2 weeks with a radiation oncologist and should have oncotype tests back by then. Did you get 2 opinions regarding radiation. I'm near Boston so I have a few options which is great but all so confusing as it the docs make it sound like it is very routine. I dread the anti hormone after reading about side effects but so glad to hear you are hanging in! Any advice appreciated. Thanks so much!

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So glad to hear that margins were clear as well as lymph nodes.

Radiation is the standard protocol for most all those who choose to have a lumpectomy. I had 20 rounds and did well.

I’ve been on an AI for over three years now and I’ve had very little side effects.

I was diagnosed at 60 and now I’m 64. ♥️

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Sue Ellen Murrey | @semurrey | Dec 6, 2022
In reply to @crichey "New to journey. 9.29.22 i went for annual mammogram. I have elected for 3d since it..." + (show)
@crichey

New to journey. 9.29.22 i went for annual mammogram. I have elected for 3d since it became available (about 5 yrs) as my grandmother passed from ovarian cancer.. because of her i fought for annual mammogram since I was 36. On 10.12 22 I was diagnosed with Invasive Lobular Carcinoma and Invasive Lobular Carcinoma in Situ in my right breast. I am 59 1/2 and post menopausal for 7 yrs. I had lumpectomy on 11.1.22 . The surgeon believes between needle byops and his magic that they got it all. Took 1st lymph and did not find spread. Now waiting for my 1st medical oncologist and 1st radiologist appt on 12.7 22 and 12.9.22 repetitively. I am worried about all of it. I have an extremely stressful job and am sole bread winner. On top of it, my significant is having heart issues (63 yrs old). How did any of you do during treatments keeping up with all the obligations in life? Am I freaking out for nothing? I could of retired 1.1.23, but not now. Cant afford it..oh yeah besides breast cancer..having to have all top teeth pulled (today) for dentures....just feel like the wheels are coming off the bus..

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Good luck on your oncology appt tomorrow! Hang in there as I totally hear you - it is so hard to figure what a priority is right now - but your health is a big one so be good to yourself! I had lumpectomy on 11/30 for ILC and waiting to meet with oncologist on 12/15 to figure out plan. The waiting is just so hard and a stressful job doesn't help. I'm going to look into medical leave as I took remaining PTO for lumpectomy and week after. One day at a time:)

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rinar001 | @rinar001 | Dec 6, 2022
In reply to @kwatson "I have been diagnosed with Invasive Lobular Carcinoma (ILC) also found in Lymph nodes. I am..." + (show)
@kwatson

I have been diagnosed with Invasive Lobular Carcinoma (ILC) also found in Lymph nodes. I am seeking a second and possibly third opinion. If anyone has suggestions, I would appreciate the input.

Obviously MAYO is a consideration but I live in Michigan (MI). If anyone knows of any ILC specialists in the the MI area, I would appreciate the information.

I am willing to travel to get the best care, so please don't hold back on your recommendations.

Thank you and my best to all on their journey.

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I have read that the University of Pittsburgh and the Fred Hutchinson Cancer Center in Seattle are leading research for LBC. Sorry I don’t know more, but you might want to look them up.

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eaglewings22 | @eaglewings22 | Dec 6, 2022
In reply to @semurrey "May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just..." + (show)
@semurrey

May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just found out negative node - very relieved! I'm 57yrs - 1.8 cm and grade 2 with margins positive for atypical which I guess is fine as surgeon said no need for additional surgery. Next appt in 2 weeks with a radiation oncologist and should have oncotype tests back by then. Did you get 2 opinions regarding radiation. I'm near Boston so I have a few options which is great but all so confusing as it the docs make it sound like it is very routine. I dread the anti hormone after reading about side effects but so glad to hear you are hanging in! Any advice appreciated. Thanks so much!

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Sue Ellen, what options were you offered re: radiation? I’m meeting with the radiation oncologist next week and want to request the shortest, least invasive option that still kills the cancer. Grandbaby expected mid March! That may not even be an option. I have ILC Stg 1 b and will have a lumpectomy (2 cm x 1cm by 1.5 cm) and immediate reconstruction at MD Anderson, followed by radiation. I’m really nervous about all of it! Any possible options that I can request re: radiation would be appreciated. I dread the hormone-blocking meds as well…Thanks for your sharing your story! I hope all of it goes well for you!❤️

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1 reply
Sue Ellen Murrey | @semurrey | Dec 6, 2022

I wish I could offer more specifics but I won't see a radiation oncologist until 12/19 but the surgeon said I could expect daily radiation treatments for 4-6 months depending on final analysis etc. Dana Farber in Boston does not offer proton beam radiation which surprises me but MGH Cancer also in Boston does have the proton beam. From the research I've done which many here have also mentioned is that proton beam seems to do the least damage to any nearby healthy tissue so I'm going to ask if I am a candidate. Let us know how your first radiation consult goes - I would think MD Anderson would have proton beam?? Regarding the hormone blocking it seems since I am post menopausal they would start with the AI's vs tamoxifen. Best of luck next week xo

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1 reply
lisakinpa | @lisakinpa | Dec 7, 2022

Perhaps your doctors meant having radiation for 4-6 weeks? I’ve never heard of having radiation for 4-6 months? ♥️

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1 reply
kks | @kks | Dec 7, 2022
In reply to @eaglewings22 "Sue Ellen, what options were you offered re: radiation? I’m meeting with the radiation oncologist next..." + (show)
@eaglewings22

Sue Ellen, what options were you offered re: radiation? I’m meeting with the radiation oncologist next week and want to request the shortest, least invasive option that still kills the cancer. Grandbaby expected mid March! That may not even be an option. I have ILC Stg 1 b and will have a lumpectomy (2 cm x 1cm by 1.5 cm) and immediate reconstruction at MD Anderson, followed by radiation. I’m really nervous about all of it! Any possible options that I can request re: radiation would be appreciated. I dread the hormone-blocking meds as well…Thanks for your sharing your story! I hope all of it goes well for you!❤️

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I just completed a one week radiation treatment for ILC at MD Anderson. Ask about the clinical trials. I was on the Opal trial.

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Sue Ellen Murrey | @semurrey | Dec 7, 2022
In reply to @lisakinpa "Perhaps your doctors meant having radiation for 4-6 weeks? I’ve never heard of having radiation for..." + (show)
@lisakinpa

Perhaps your doctors meant having radiation for 4-6 weeks? I’ve never heard of having radiation for 4-6 months? ♥️

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Yes- sorry meant 4-6 weeks!

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Sue Ellen Murrey | @semurrey | Dec 7, 2022

Thanks KKS for sharing about your radiation treatment! I will inquire about clinical trials but my oncologist had mentioned that most were currently focused on ductal rather than lobular. Was your one week radiation as specific type - proton beam, external or internal beam? Just trying to get a better understanding of best options but I realize it depends on many variables.

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