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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 6 days ago | Replies (618)Comment receiving replies
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?
Replies to "I would like to see a separate formum as well. I was diagnosed in 2/25 with..."
@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...
@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!
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Hello @wews, we are always improving Mayo Clinic Connect which includes opening new groups when the volume of posts around particular topics or diagnoses demands it.
In the meantime, there are a few more discussions about invasive lobular cancer, you can find them here, https://connect.mayoclinic.org/group/breast-cancer/.
There is value to keeping the breast cancer questions 'under one roof' so more members are able to see them and partake in them.