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.

Profile picture for kstar077 @kstar077

I just had ultrasound today of left breast. I am 9 months since lumpectomy in left breast. I am having an mri of breasts in July. Insurance let's you have once a year. It was the only study that showed my cancer. Mammo did not and actually ultrasound did not til I felt a hard peasized lump at 12:30 6cm from nipple in left breast. I am requesting a flush IV after mri in July to get rid of gadioleum after. I am wondering if anyone has had. Does Medicare pay for it? And has your surgeon ordered with mri. Thanks

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I just got off phone with radiologist and my breast surgeon office. I am having mri in July and told them I want a flush after mri concluded of my breasts in July to get rid of gadilinium in system. They assured me that they will bolous flush gadilinium out at conclusion of my breast mri. Yay! You all need to make sure at conclusion of your breast mri that the facility is bolousing flushing the gadilinium out as much as possible. I will remind them when they do my mri of my breasts in July.

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Scheduled my mri of breasts July 29th. I spoke to hospital and radiologist and they said after mri with dye gadilinium, they bolous dye out of system. Make sure when you have mri of breasts that your facility flushes dye out at conclusion of mri.

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Profile picture for segm @semurrey

My onco fought me on MRI at Dana Farber even though lobular and very dense breasts still at 58 yrs old! She finally put in order and my insurance did cover! Congress has The Find it Early Act but no action so far but this will make ins companies cover breast MRI for those at higher risk! I’ve also read that while the contrast has been found to stay in some areas of body no ill effects have been proven. Early detection is all we have!

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If you read the dye paper that you sign read when you have dye with mri it says you should only have the dye 4 times in life. Apparently it goes in brain and other places in body. Drinking water and Gatorade after exam only flushes so far. I am requesting a IV flush after mri. I just want to connect with people that have had the IV flush. Who out therehas? Thanks

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Profile picture for segm @semurrey

My onco fought me on MRI at Dana Farber even though lobular and very dense breasts still at 58 yrs old! She finally put in order and my insurance did cover! Congress has The Find it Early Act but no action so far but this will make ins companies cover breast MRI for those at higher risk! I’ve also read that while the contrast has been found to stay in some areas of body no ill effects have been proven. Early detection is all we have!

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I read fine print on the gadilinium(sp) dye used with the mri of breast and it says not to use more than 4 times in life time. Unfortunately, I have used it in other studies as well in other parts of my body. I am requesting the flush IV after my breast mri in July and requesting Medicare to pay. Has anyone out there had Flush IV after mri with dye procedure? Thanks

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Profile picture for kstar077 @kstar077

I just had ultrasound today of left breast. I am 9 months since lumpectomy in left breast. I am having an mri of breasts in July. Insurance let's you have once a year. It was the only study that showed my cancer. Mammo did not and actually ultrasound did not til I felt a hard peasized lump at 12:30 6cm from nipple in left breast. I am requesting a flush IV after mri in July to get rid of gadioleum after. I am wondering if anyone has had. Does Medicare pay for it? And has your surgeon ordered with mri. Thanks

Jump to this post

My onco fought me on MRI at Dana Farber even though lobular and very dense breasts still at 58 yrs old! She finally put in order and my insurance did cover! Congress has The Find it Early Act but no action so far but this will make ins companies cover breast MRI for those at higher risk! I’ve also read that while the contrast has been found to stay in some areas of body no ill effects have been proven. Early detection is all we have!

REPLY

I just had ultrasound today of left breast. I am 9 months since lumpectomy in left breast. I am having an mri of breasts in July. Insurance let's you have once a year. It was the only study that showed my cancer. Mammo did not and actually ultrasound did not til I felt a hard peasized lump at 12:30 6cm from nipple in left breast. I am requesting a flush IV after mri in July to get rid of gadioleum after. I am wondering if anyone has had. Does Medicare pay for it? And has your surgeon ordered with mri. Thanks

REPLY
Profile picture for estebanf @estebanf

New here concerned my daughter 41, was just diagnosed with invasive lobular carcinoma.. from biopsy taken couple days ago.. size 3 cm..preliminary say lymph nodes ok, told her calling it invasive because it’s broken into tissue.. seems like stage 2 now more testing begins. Has family three children, lives in Washington.. scared dad. She is too,
Anyone else have similar diagnosis and can share , treatment and or outcomes.
TIA

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I too had invasive lobular cancer in my left breast. my cancer was HER2 + I had chemo, mastectomy, radiation, and more chemo. The radiation and second chemo was needed because I had residual disease in the tissue removed. The waiting for test results and the unknowing are so difficult to deal with.

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Profile picture for estebanf @estebanf

New here concerned my daughter 41, was just diagnosed with invasive lobular carcinoma.. from biopsy taken couple days ago.. size 3 cm..preliminary say lymph nodes ok, told her calling it invasive because it’s broken into tissue.. seems like stage 2 now more testing begins. Has family three children, lives in Washington.. scared dad. She is too,
Anyone else have similar diagnosis and can share , treatment and or outcomes.
TIA

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I just finished treatment for this same thing, although my tumor was smaller. The “invasive” makes it scary sounding but as you said, it had just spread a bit outside lobule. I had a quite easy lumpectomy followed by radiation. I didn’t need chemo bc lymph nodes were not involved. Everyone told me it was extremely curable and not to panic, so I didn’t and it turned out ok. Honestly, other than some mental anguish anyway, it went smoothly and I feel safe putting it behind me. I have faith that Mayo did what was needed. I am 66 so perhaps a much younger woman may need more aggressive treatment. I’m on an AI for 5 years which I’m not fond of, but just started it and I’ll stop it if I have trouble. I realize I was a lucky one and do not mean to make light of cancer or the severe things some women go through. Just trying to give some hope.

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Just had a left mastectomy after diagnosis with invasive lobular breast cancer. Pathology indicates carcinoma in one node. My oncologist says this scenario used to be considered Stage 2, but with the effectiveness of letrozole she doesn't think chemo or radiation is necessary. She did set up a consult with a radiation oncologist, just to be sure. I'm seeing him on Monday. Fingers are crossed!

Its scary and frustrating to have to make so many decisions when this is all so new.......we expect doctors to TELL us what to do rather than ask, us what we prefer, and that can be hard. Still, I've found that if I ask lots of questions, my doctors come up with some very good answers. I opted for reconstructive surgery, so we're going down that road (which is trickier than I was prepared for!) The key is - ask questions, stay calm, think positive, and be kind to yourself. It's important.
Good luck.......sending prayers to everyone in this frightening battle.

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Profile picture for dlst @dlst

Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day as you: 12/26/23. I had a lumpectomy, but margins were not clear and I have pleomorphic LCIS, so they must be clear. I was in shock when I found out that I need another surgery - either a second lumpectomy plus radiation or a mastectomy (both requiring hormone therapy.) I still have not made up my mind. I am waiting for genetic testing results and PET scan, plus getting a second opinion. I'm just not sure what to do. I am TOTALLY not prepared to make a decision on a topic I know next to nothing about (compared to all my docs) that includes so many uncertainties, yet will affect me for the rest of my life. Previously when I was sick doctors told me what to do and I did it. That's why they study so many years, so they can advise you. I feel that it's not fair that I have to make this decision. I literally don't know what to do, and I've been stuck here for nearly a month, still can't make up my mind. Any and all help is appreciated. Thanks!

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You are going to have to do it all. Have all the testing. Pet scan. Mri. Genetic. Ultra sound. Lymph node. Radiation. Possibly masectomy depending on if it has spread into margins and lymph nodes. Get 2nd and third opinion after all your testing. Jump on this and do all you can to save yourself. Get going.

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