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.

@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

Jump to this post

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.

REPLY
@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

Jump to this post

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.

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
@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
@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!

Jump to this post

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

REPLY
@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!

Jump to this post

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

REPLY

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.

REPLY
@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

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.

REPLY

Super helpful! Is it current protocol to flush?

REPLY
@semurrey

Super helpful! Is it current protocol to flush?

Jump to this post

Yes it is protical to flush. But ask the radiologist and facility and tech to make sure they flush at conclusion of mri of breasts with dye.

REPLY
Please sign in or register to post a reply.