Lobular Breast Cancer: Let's share and support each other

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

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

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!

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

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.

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.

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.

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.

I had ILC left breast 12mm 12:30 6cm from nipple. It was undetectable with mammo that I had religiously every year along with ultrasound. I felt a lump a few months after my yearly mammo and ultrasound. Had a mammo and it did not show. Had ultra sound and did not show til I put my finger right on lump. It showed on mri but dye is bad for you. Insurance is letting me have ultrasounds every three months and mri once a year. I am not having mammos anymore because they did not show cancer. I believe if you insist with your doctor to have mri more often insurance will let you. I worry about the dye. I flush my body with saline and drink plenty of water and Gatorade to flush dy after. You have to insist on your care
Insurance will pay if you do.

@estebanf

Check out the Lobular Breast Cancer Alliance site for tons of information….