Invasive lobular cancer and treatment choices

I've taken Anastrozole for almost two years. All that I've experienced have been occasional hot flashes and some hair thinning. I'm glad that I've taken it. I was also taking Ibrance which caused no problems other than hot flashes and a little more hair thinning.

I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm 58 yrs, rather thin, small build who does all the calcium, vit D and strength exercises. The endocrinologist really thinks best option is to start with weekly Fosamax. I am in remission with my Chrohn's but there is a possibility I will have to go with the annual infusion of Reclast if I don't properly absorb Fosamax. I am very anxious as side effects seem terrible and no way of knowing if I will in fact have any spine fractures which my doc is most worried about. The doc also said root canal, crowns would NOT be an issue but extractions, implants would be procedures he would recommend getting before going on the bisphosphates. Anybody have advice....xooxox

What is the name of the chemo pill you took?

Thank you. Were you on the blockers when you had your reoccurrences? How did you know you had cancer after a mastectomy? Invasive lobular is a sneaky cancer. It seems to like to reoccur.

I was also diagnosed with ILC 6 6 years ago on my left breast and opted to do a mastectomy with reconstruction. I tried tamoxifen 3 different times but I felt very dark and gloomy with terrible joint and muscle pain. After talking with my doctor who told me my risk would go from 7% to 4% by taking tamoxifen, I decided to not take it anymore. However, in January 2024 I had my annual mammogram which detected a small spot on my right side. After the biopsy it was confirmed that I once again have ILC in my right breast - stage 1 and the MRI does not show that it has spread and the type of ILC is similar but not the same as the first ILC I had so it did not spread from my left breast. Chemo and radiation are unlikely but we will know for sure once the surgery is done. I am going to remove my implant on the left breast, have a mastectomy on the right breast (I just can’t have anymore scares with the mammograms) and have a DIEP flap to reconstruct both sides. I wanted this surgery the first go around but the plastic surgeon said I didn’t have enough fat (which I thought I had more than enough) but thanks to age and menopause I now have enough to reconstruct both sides. I didn’t realize all these years I was feeding and growing my new belly boobies. I will once again try the hormone medication and hopefully because I’m in menopause the different drugs will not affect me as much. Good luck to you in your journey. I’m sorry you are having to go through this!!!!

Thank you. Were you on the blockers when you had your reoccurrences? How did you know you had cancer after a mastectomy? Invasive lobular is a sneaky cancer. It seems to like to reoccur.

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...