Invasive lobular cancer and treatment choices

I had invasive lobular cancer in my right breast, tumor was 3.1 cm with additional nodules around it. Had 1 positive lymph node and one with ITC cells. Left breast invasive ductile cancer with 4 mm tumor. Both cancers were estrogen+, progesterone+ and Her2 -, I had double mastectomy with 7 weeks radiation including boosted radiation for positive margins in right breast. I did not have chemo due to low oncotype scores and no advantage.
I took the hormone blocker arimedix for 18 mos but lost 14% bone mass in my lower spine and hips within that time, memory loss, arthritis in hands, severe insomnia, mood disturbances, depression, etc. so quit the medication. I still see my onccologist but also see an md who is a functional medicine, naturopath as well. I take dozens of natural AI's and do intermittent fast along with rigourous exercise at least for days a week. I had my estrogen levels checked a few days ago and they were 14pg/ml. I contacted my oncologist office and they as I thought the labs were positive but they told me my levels should be 1-3pg/ml. I am worried now. Has anyone else taken the path I have successfully? Anyone had there estradiol checked while on hormone blockers? Any advise would be appreciated...

Hello. It’s all so worrisome, isn’t it? I had one ILC and one ITC in my left breast. I chose a double mastectomy straight out even though my right breast was cancer free. I’m flat. And glad of it. In fact, it makes me feel sort of safe. I wear bras especially fitted by a surgical supply store when I want to feel like I look better. The choices are hard and you have to do what feels right to you. I have no regrets about the double mastectomy I chose. Good luck!

I was 71 when I had a double mastectomy for ILC (it took 6 months to get clear enough margins because it didn’t show on the mammograms and ultrasounds I’d had for decades). As a large breasted woman, I was immediately relieved not to have breasts. While it’s not for everyone, I am fine being flat (stay away from princess seams) though it really rankles me that I had to make the decisions at all. Proper imaging (MRIs) would have found it years before it metastasized into my lymph nodes. Now, I will have it for the rest of my life.

Hang in there. I took Exemestane for 6 months in order to get clear enough margins. It’s a tough decision either way.

I asked my surgeon what she would do in my situation with unclear margins. She said she would get the mastectomy. That was my next move. If my margins were clear I would have kept to the lumpectomy and radiation. Invasive lobular is very sneaky. They found my 3rd tumor by luck with ultrasound. The mammogram or MRI never caught it. It’s been a week since the mastectomy. I have one drain out and one to go. I’m healing but is a much harder surgery emotionally and physically than the lumpectomy was for me. I hope this helps.

My experience with ILC is that I had a lumpectomy, but the margins were not clear , so I need a second surgery. However, the surgeon is giving me a choice between a second lumpectomy plus radiation therapy OR a mastectomy. The long-term survival rates are identical (no statistical significance between them.) The surgeon advises a mastectomy. The oncologist advises the lumpectomy plus radiation. For those who had a mastectomy, even though you might have had a lumpectomy plus radiation, how are you feeling about it now? Do you regret it or are you glad you did it? Thanks for any advice! (I will still need Anastrozole with either surgery, but no chemo with either, due to the small size of the tumor - 2 mm).