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

One of the struggles I have with this is trying to determine how helpful continuing to take Letrozole is for me with ILC. I have an early stage ER+, PR-, HER2- cancer, Stage 2, detected by a 5mm mass. But after lumpectomy, there were two other tiny masses that never showed up on mammogram or MRI. Negative lymph node. I was also treated with radiation. The Predict tool is based on ductal carcinoma, or, at best, all breast cancers lumped together. At 72, the Predict tools predicts very very little advantage from using an AI, and I'm definitely not liking the symptoms from Letrozole, or it's risk to my bones. I already have severe osteoporosis. But I suspect the Predict tool underestimates the impact of an AI for ILC vs ductal cancer. Size of the tumor is a variable in the Predict tool, but what is the real size of our tumors when they're stringy, and multiple locations and "hiding?" Does anyone else have thoughts about the effectiveness of AIs for us?

@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 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 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!

I would like to see a separate formum as well. I was diagnosed in 2/25 with stage 1A grade 2 no lymph node involvement and opted for bilateral mastectomies. HR positive HERS negative. I have been in leteozole which seems to be the AI of choice for ILC for a year. I suffer mostly joint stiffness. Hit flashes periodically. I would like to see oncologists look at AI drugs for ILC. I didn’t need chemo or radiation since I had bilateral mastectomy and clean margins. Still I don’t understand why more specific therapy is targeted to ILC. Why isn’t my estrogen level tested regularly to determine if I need to take letrozole every day? Why isn’t my weight and size taken into account in determining dosages?

Is there anyone moderating this group that could establish a separate group for us with specific infornation for treating ILC?

@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...

I would like to see a separate formum as well. I was diagnosed in 2/25 with stage 1A grade 2 no lymph node involvement and opted for bilateral mastectomies. HR positive HERS negative. I have been in leteozole which seems to be the AI of choice for ILC for a year. I suffer mostly joint stiffness. Hit flashes periodically. I would like to see oncologists look at AI drugs for ILC. I didn’t need chemo or radiation since I had bilateral mastectomy and clean margins. Still I don’t understand why more specific therapy is targeted to ILC. Why isn’t my estrogen level tested regularly to determine if I need to take letrozole every day? Why isn’t my weight and size taken into account in determining dosages?

Is there anyone moderating this group that could establish a separate group for us with specific infornation for treating ILC?

Thank you for all your comments. I am trying hard to understand this disease. I had a double mastectomy after being diagnosed with invasive lobular carcinoma. After the operation, they found that my right breast at a 8.9 cm, 6 cm, and 6 cm tumors....before the operation they thought it was a 2.2 cm. They thought my left breast only had invasive lobular carcinoma in situ....turned out that it had 2.2 mm, 6mm, and 2 mm invasive lobular carcinomas. I knew something was wrong before the operation because my breasts were shrinking like crazy. I am in radiation for 33 sessions plus 5 if needed. Then...I am to take Anastrozole for 10 years. I put on Aquaphor 3X a day to help with my "delicate" skin. I have monoclonal B cell atypical CLL trisomy 12 Kappa,Sjogren's, and an IGg and IGm immunity disorder. I was on chemo but now just get Gammagard, B12 shots, and iron if needed. My WBC, RBC, and HGL are always low but my Monocytes are always high. At any rate, I continue to try to understand, still try to keep a happy outlook, and am looking for any advise as per this disease. I was a special education teacher so love to do research....Thank you everyone.

I would like to see a separate formum as well. I was diagnosed in 2/25 with stage 1A grade 2 no lymph node involvement and opted for bilateral mastectomies. HR positive HERS negative. I have been in leteozole which seems to be the AI of choice for ILC for a year. I suffer mostly joint stiffness. Hit flashes periodically. I would like to see oncologists look at AI drugs for ILC. I didn’t need chemo or radiation since I had bilateral mastectomy and clean margins. Still I don’t understand why more specific therapy is targeted to ILC. Why isn’t my estrogen level tested regularly to determine if I need to take letrozole every day? Why isn’t my weight and size taken into account in determining dosages?

Is there anyone moderating this group that could establish a separate group for us with specific infornation for treating ILC?