← Return to Diagnosed with ILC . Thoughts on bilateral mastectomy?

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@kakc19

Thank you for your story. I had my lumpectomy yesterday, and 4 weeks radiation in the near future.
I too have osteoporosis as of 2022. I could not tolerate the pills so every 6 months I get prolia injection which I have tolerated just fun. No side effects.
Hope that offers you some comfort.
Again thank you.

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Replies to "Thank you for your story. I had my lumpectomy yesterday, and 4 weeks radiation in the..."

@kakc19 Prolia has a vicious rebound if you try to get off and will require Reclast or Zometa to manage the quick drop in bone density and increase in fracture risk. On the osteoporosis forums here there is a lot of info on that.

@joycealeaine Reclast or Zometa are generally used along with letrozole. Most people do fine on them. Yes there is a long list of side effects and people post about them. You might want to get a copy of Keith McCormick's book "Great Bones>" My cousin is medically fragile and had a BMX followed by letrozole and Zometa and seems to be doing fine.

I have lupus and my docs did not want me to have radiation. Mastectomy was the only way to avoid that.

I had a BMX and went flat and it wasn't a big deal. My endocrinologist did not put me on any bone meds for my already advanced osteoporosis while I did letrozole- due to afib and kidney issues. Six years later I did fracture because COVID delayed my Tymlos. After Tymlos my bones are better than they were before cancer.

I had grade 3 mixed ductal and lobular invasive with an ambigious HER2 (extra testing finally said I could skip those drugs), and lympovascular invastion. Ten years out.

No matter what choices we make, statistics today are reassuring. My onco says recurrence rates are much lower than they used to be. I believe she was including both local and metastasis.

My non-cancer breast, which was removed, had a lot of atypical ductal dysplasia and was full of cysts as well.

For lobular, there is an organization advocating for more research because lobular has been a little neglected in that area. https://lobularbreastcancer.org/