Newly diagnosed with invasive pleomorphic lobular cancer

I will definitely let you know what my treatment plan is! My oncotype was low, it was 11 but my sister’s friend who is a nurse and breast cancer navigator believes that they will still recommend chemo as a preventative because of the type of cancer it is. I don’t want chemo but at the same time I’m afraid of it spreading or recurring. It is definitely is hard to find information or support groups for the pleomorphic type. Everything seems to be geared to invasive lobular only. Not that I would wish this on anyone but it’s nice to talk with someone else who had this too.

I agree; I wouldn't wish this on anyone, but it is nice to find someone else with the same type. Good luck at your next appointment, and let me know what your oncologist recommends.

Yes, the cancer that I had sounds very similar to yours, which is why your post caught my eye. I haven't met anyone else with the pleomorphic type. I wasn't in menopause either, but the treatment has changed that. My grade 3 tumor, combined with a higher onco score, is why I benefited from chemo (which was 4 rounds). I had a port installed because my veins are small. It made the whole ordeal so much easier. The first surgeon I went to recommended a double mastectomy, and the second one (who ended up performing the surgery) did not because my genetic testing came back clean. She reasoned that the other side was healthy, and it is best not to have a major surgery on a healthy organ. It doubles the chances of complications, and it wouldn't change my survival odds. Plus, I feel like I am being closely monitored because I get an MRI on both sides every year, with a mammogram in between. That wouldn't be happening if I had a double done. I wish you all the best, and I would be interested to hear if your oncologist recommends the same treatment that I have had.

@cmocmo your partial comment “ the second one (who ended up performing the surgery) did not because my genetic testing came back clean. She reasoned that the other side was healthy, and it is best not to have a major surgery on a healthy organ. It doubles the chances of complications, and it wouldn't change my survival odds. Plus, I feel like I am being closely monitored because I get an MRI on both sides every year, with a mammogram in between. ” is great and important for us to know. I had a single side mastectomy in 2019 and my oncologist is having me do MRI on both sides and mammogram in between just like your monitoring. Sounds like you have a great Dr. Blessings to you.