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

Radiologist said dye from mri not good for people with multiple sclerosis. Their brains are already damaged. Mri ok for me because my brain is normal so far. Again IDC does not show on mammo. And was missed on ultrasound. I am doing the best I can to stay healthy and hopefully my cancer c will not come back.

Thinking of you and totally understand - have you been diagnosed with ILC? I'm assuming you've had biopsy showing ILC and then you also have clumps of cysts etc. I too have many cysts and density so I requested alternating 6months mammo and MRI. One year post lumpectomy and radiation for 1.8cm ILC right breast my 3D mammo is new baseline. I will have mammo in April - I hear ya on surveillance - very stressful but will be my norm.
Keep us posted. xoxo

Had 11mm 12:30 6cm from nipple ILC left breast cancer. Did not show up on mammo missed on ultra sound. I felt myself in left breast. Immediately did manmo .did not show up again. Had ultrasound with me pointing to rock feeling lump. Had core biopsy. Had mri which showed it perfectly. Had lumpectomy. Margins clear. Lymph nodes clear. No radiation. No chemo. My testing and blood did not warrant. No hormone blocker meds. 4% chance cancer comes back after having hormone blocker for five years and radiation. 8% chance coming back without radiation and hormone blocker meds for 5 years. 92% chance cancer not coming back . I am thin and have osteo penia. With hormone blocker i will probably get osteoporosis. Had hystectomy. 1 year prior to breast cancer So no hormones from ovaries. Mammo did not show ILC so having ultra sounds of breast in may. And mri bilateral in July 1 year out from last mri. Apparently mammo does not show cobweb ILC. Thank God I found my cancer myself. I felt it. I am going to have ultra sound and mri from now on. You have to be your own advocate .

Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't want to have to go through with this again, if I can do everything in my power up front. I am not good with "wait and see" as it relates to this topic. I know it's not a guarantee to have mastectomy, but in my mind/emotionally, getting rid of the breast tissue in its largest portion, goes a long way toward decreasing my anxiety about recurrence...lurking masses that previously never showed up on any imaging, despite having 3D mammos every year for several years. The MRI report stated the tumor in the right breast, large clump of cysts in proximity ("probably benign") and left breast with several oval masses "probably benign, recommend MRI again in 6 months". The word "probably" leaves me no consolation. I suppose many might think I am looking at this as overkill, but the reasons for me are many, including having watched a very good friend die a miserable and painful death from peritoneal cancer and know that ILC has a propensity for the peritoneum, bones, along with GI tract if it decides to show up and live elsewhere. Some people are willing to roll the dice. I am not. Now, might the plastics guy talk me into a single? Maybe. I won't close my mind to it, but my inclination/spidey-senses are telling me to do the double.

Thanks for sharing and you're so on point with advocating for the best surveillance. My oncologist reluctantly agreed to my request for 6 month MRI after the first mammo post surgery which was a full year after ILC lumpectomy and radiation. I just don't understand why she was so difficult. She is at Dana Farber and I'm now wondering if it related to compliance.. insurance etc. Are oncologists dinged if they order MRI's. I am so discouraged and dread meeting with her again post MRI as if there is nothing remarkable she will probably not authorize further MRI's??? Do I reach out to MGH as they are in Boston too but I wanted to be a Dana Farber as they are a premier breast center. any thoughts!!??xoxo

My surgeon wanted me to have manmo follow up. I said no because mammo did not show my ILC. Again I found it. It showed up on mri. I have had ultra sounds of entire breasts since. I will have an mri in July which will be 1 year since my last mri. It is because of expense and Medicare will not pay. Sad but true. I will never have another mammo. Why would I if it did not show my cancer. My surgeon's response was but it shows other cancers. All I can say is keep on top of your breasts your self. I was lucky I felt 12mm rock myself. I am a mammo tech and am shocked that mammo did not show my ILC. The ultra sound did but I had to show to tech. The exact spot where I felt it. My surgeon said ILC is like cobwebs and does not show up on mammo. Surgeon said that mammo shows other breast cancers. I am continuing to have ultrasounds and making sure tech goes over every inch of both breasts. Also, prior to feeling lump in breast I had a mammo my yearly five months before and it did not show the ILC in left breast. Nor did the ultra sound. My surgeon said the ultra sound probably skimmed over the cancer. She said the tech sweeps the breast and now I have them go over it slowly and with detail. My surgeon said my cancer was probably there two to five years before it was discovered. Again, I just had ultrasound of both breasts and in may having ultrasound of left breast and bilateral mri in july of both breasts. If I have cancer again I will have lumpectomy again. I did not have radiation and I am not doing the hormone blocker. I have had hysterectomy and I am thin and have osteopenia and do not want osteoporosis. I also am having a customer of my bladder tomorrow because I get bladder infections too often now. I also had colonoscopy one year ago and it was neg.

My surgeon wanted me to have manmo follow up. I said no because mammo did not show my ILC. Again I found it. It showed up on mri. I have had ultra sounds of entire breasts since. I will have an mri in July which will be 1 year since my last mri. It is because of expense and Medicare will not pay. Sad but true. I will never have another mammo. Why would I if it did not show my cancer. My surgeon's response was but it shows other cancers. All I can say is keep on top of your breasts your self. I was lucky I felt 12mm rock myself. I am a mammo tech and am shocked that mammo did not show my ILC. The ultra sound did but I had to show to tech. The exact spot where I felt it. My surgeon said ILC is like cobwebs and does not show up on mammo. Surgeon said that mammo shows other breast cancers. I am continuing to have ultrasounds and making sure tech goes over every inch of both breasts. Also, prior to feeling lump in breast I had a mammo my yearly five months before and it did not show the ILC in left breast. Nor did the ultra sound. My surgeon said the ultra sound probably skimmed over the cancer. She said the tech sweeps the breast and now I have them go over it slowly and with detail. My surgeon said my cancer was probably there two to five years before it was discovered. Again, I just had ultrasound of both breasts and in may having ultrasound of left breast and bilateral mri in july of both breasts. If I have cancer again I will have lumpectomy again. I did not have radiation and I am not doing the hormone blocker. I have had hysterectomy and I am thin and have osteopenia and do not want osteoporosis. I also am having a customer of my bladder tomorrow because I get bladder infections too often now. I also had colonoscopy one year ago and it was neg.