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

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

I did not roll the dice and had double mastectomy. LobBC was early stage and multifocal in only left breast. I had believed for the most part in the onco and first surgeon, but to be brief it came
back twice in my arm pit (dodged being directly in a node) AND I had been told A LOT if "it's probably not BC. when I lived in Fl. 2013, -2019. I may have been cancer free in the earlier yrs of this had my cancer cell samples from the 1st surgery been analyzed by onco and surgeons in Fl
with a better understanding of for one Lobular BC. University oncologists and surgeons here in Duke BC Ctr. in NC said after I told them my journey, " we do not deal in "probablies". " after radiation in FL 2019 & after surgery for 2nd tumor (much smaller cuz I was on top of it, found it)this NC group at Duke Breast Cancer Ctr. surg: &Radiation 2022. KEY THING IS even after a dbl mastectomy, you still have breast tissue reaching to shoulder and arm pit area. so you have to check you arm pits deeply. Unfortunately, it did travel to metastasize already apparently what they thought in the MRI, bone scans in 2022 on my vertabrae#5 (left! side) was MLBC .but they only decided to biopsy what they thought was a benign bone island a few months ago because it was 15-20% larger. It is now 2cm. So 2nd opinions and you advocating abt. any suspicion & regular imaging--is a necessity.

Amen sister!

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 .

In fine print of release you sign to have mri of breast with gadolinium) It has warnings. But I have no choice to have mri with the dye because my IDC did not show up on mammo. The radiologist said the dye warning is for people that have an abnormal brain from multiple sclerosis. My brain so far is normal so I can have the mri with dye. Read up on side effects of the dye for yourself.

I understand your concern over the dye used in MRI but have they reported on whether the dye found in brain after many MRI's is damaging? My onco also told me about this and of course given your MS I understand where you are coming from but at this point I am very worried about scans missing further ILC...xoxo

Thats what I did. Wishing you good health. God bless. ❤️

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.

I had IDC cancer. Left breast. 11mm. Had lumpectomy. Nothing in margins or lymph nodes. No radiation and am not taking hormone blocker. 4% chance cancer comes back doing radiation and blocker. 8% chance return doing nothing. 92% chance won't come back. I also had a hysterectomy. I am going to have mri every 6months and ultra sound. My mammos do not show IDC. I found lump myself. After I had mammo that said no cancer. And I hD to point to spot 12:30 left breast. 6cm from nipple. It showed on mri. Surgeon said IDC like cobwebs not visible on mammo. Yikes!. Mris for me in future only. And ultra sound.

I live in S. Florida and will be going to the Lynn Cancer Institute here. I have no desire to go to New York. I do know that Sloan is excellent as well. Thanks & best health wishes. I've had a lumpectomy and will be doing a double mastectomy in a short while. Not taking any unknown chances.