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

@wews Can you please elaborate "leteozole which seems to be the AI of choice for ILC"? Where does that come from? I am very much interested on this because the pathologist did not see any effects of Anastrozole on my cancer. The doctors seem to ignore that remark...

@llthomson my oncologist told me that leteozole was the drug of choice. I am not sure why but I think it is perhaps a stronger AI drug? I am seeing my oncologist this week and will ask her to elaborate. Sorry I can’t provide research showing this definitely. Someone posted earlier a study out of the university of AR which said letrozole stays in your body for 48 hours so the dosage is high if you are taking it daily. Maybe this is why she said this to me? It was her preference for me to take it.

@wews I'm interested that you had a bilateral mastectomy for stage 1a ILC. Mine was stage 1a also, diagnosed last August, tumor was 7mm & I had a lumpectomy with 5-day radiation & now take 10 mg (half-dose) of Tamoxifen (I'm 72 & need the bone protection). No real side effects. Any reason you chose bilateral mastectomy over lumpectomy? Every story is interesting & helpful!

@jmab yes I chose it because of what the surgeon said. She said with a lumpectomy and radiation, I had a 15% rate of reoccurrence and with a mastectomy I had a 2% chance of reoccurrence. This is from a surgical perspective. I didn’t want two different breasts and I avoided radiation which would have been close to my heart.

I am 71 and I am curious about your taking a half of tamoxifen to protect your bones. I didn’t want to do tamoxifen because of the risk for uterine cancer. Are you tested regularly for that? You haven’t had any side effects? And why a half a dose? I sometimes wonder about alternatives to Letrozole and have been afraid to do the tamoxifen. Can you provide insight into your decision there? I agree it is so helpful to understand why we each make such unique decisions. ILC is so different from other breast cancer yet the treatments aren’t specific to us. I don’t think the data about cancer is either! Thanks.

@wews thanks for the info about your surgery, it makes sense! So, in my case, the first oncologist at my medical center wouldn't even consider Tamoxifen due to the possible risks. But I ended up at a really great cancer center, Fred Hutchinson in Seattle & my new oncologist (with far better credentials) insisted 100% on Tamoxifen due to my history of low bone density. And his conviction resonated with me. He initially suggested 20 mg (usual dose) but I wanted to try a half-dose (10 mg) which would mitigate side effects. And he agreed based on the fact that there are large, ongoing clinical trials evaluating the effectiveness of 10 mg (& probably also 5 mg, I'm guessing). He said, "why would they be spending the time & money on trials if they didn't believe there was a basis for lower doses?". So, I started 10 mgs of Tam on Jan. 1st. The first week I had a mild headache off & on. But now, I just pop the little pill each night along with my statin & I don't even think about it! No side effects. The risk for uterine cancer is very low, but not zero. They suggest having pelvic exams (no, thanks) & otherwise, obviously, to watch for any bleeding. Some people choose regular uterine ultrasounds but that's not standard. Here's a fun fact: I had been experiencing frequent bouts of indigestion & acid reflux for a couple of years, especially if I was stressed. Since starting Tam, I haven't had any stomach issues at all! Which is maybe a coincidence, but either way, I'll take it! And I like knowing that it's helping to protect my bones. So, it's been a perfect fit for me (SO FAR! Especially if it prevents any recurrance!). Hope this is helpful! Sending best wishes!

@jmab wow. That is great information. My oncologist just dismissed tamoxifen for me. But I had slightly low bone density so being on letrozole is a worry to me. I lift weights and take algie cal supplements but I should ask if switching to a lower dose of tamoxifen would be an option for me to consider. I get pelvic exams anyway but I had some post menepausal bleeding and had a d and c in my early 60s so not sure if that is a concern. But this is good information for me to consider as an alternative to letrozole. I see my oncologist this week so I will discuss it with her. Did your oncologist have experience with ILC? I am realizing there are specialists for ILC and I am wondering if it would be worth seeing one for a second opinion.

@angela2932
My original biopsy on my right breast showed a 2.2 cm tumor. After mastectomy, the biopsy showed a 8.9 cm tumor, a 6 cm tumor, and a 6 cm tumor....all aggressive lobular carcinoma. The left breast show nothing on original tests, but the breast was shrinking quickly as the right breast did...so I decided that something was wrong and chose a double mastectomy. I never felt lumps. Well...the left breast had a 2.2 cm, a 6 mm, and a 2 mm tumor in it...all ALC but also "some" ALC tumors in situ.....I am in radiation now and will take hormone treatment as I already have gammagard and chemo for my leukemia.Thank you for the info on LBCA...I did not know about it. SMiles

What is the good research of letrozole. I am suppose to go on Anastrozole after radiation. Just wondering. Also....MD saidCK 4/6 drugs might be added...what is that?

Letrozole has been shown superior to tamoxifen but little suggesting superiority over other AIs. CDK4/6 inhibitors have been a game changer. It is targeted therapy. There are some adverse effects similar to chemotherapy but generally much less severe and outcome data is impressive.

@wews I'm in a quandry too. I have had MILC since 11/23 diagnostics. But have been dealing w/ ILC off and on since 2013. Double mastectomy w/ poor health practiioners , either not taking out areccurrence with ample margins or the metastatic migrated to 1 vertabrae. I alson have had to have periodontic surgeries and no I need a root canal redone...so I haven't had any Zomeda treatment since about 18 mos ago due to potential for Zomeda to cause a kind of jaw necrosis and I do take a half dose of Anastrozol The PA said that maybe due to holding off on the last 2 Zomeda treatmts & the Anastrozol side affects of bone loss I have areas in my lower spine and hips that are now presenting as Osteoperosis. 3.1-3.9 numbers. and she wants me to take Tamoxafen now. The side affect of excessive endometrial cell development is concerning and thus risk for cancers in the uterus,etc. and postmenoposal is much higher risk than premen. I have 3 family members who have had hysterectomies for Fibroids and I just feel like I would be even more prone to this kind of cancer developing and if I have had no cancer growth at all w/ Anastrozole I'd rather try to improve my osteoperosis and will be getting Zomeda infusion probably in July & do veery consistent weight bearing exercise and see how that goes first.