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

Breast Cancer | Last Active: May 9 10:00pm | Replies (352)

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@semurrey

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

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Replies to "Thanks for sharing and you're so on point with advocating for the best surveillance. My oncologist..."

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.