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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 6 days ago | Replies (370)Comment receiving replies
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.
Replies to "Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't..."
I had a left breast Lumpectomy, & 3 Lymph nodes removed. Going to Oncologist today to see what's next. I WANT a double Mastectomy for sure-no questions since this ILC is not to be fooled around with. I don't need it to metastasis anywhere else. I do not want reconstruction at my senior age, no more possible infections or repeat surgeries. I've done a lot of research but sadly, there is so little on ILC.
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.
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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