Diagnosed with ILC . Thoughts on bilateral mastectomy?

I was diagnosed with DCIS at 65 and had a lumpectomy and reduction (and reduction in the other breast also) in January 2017. Because my tumor was so small, not in the lymph nodes, and was E+/P+/Hers-, I qualified for a study on a type of radiation called CyberKnife. It was ONE highly targeted treatment. I thought it was awesome. I felt nothing, and had no side effects. The genotype on my cancer said it was very slow growing, and that my chances of a reoccurrence were 1to 4% in 10 years if I took an estrogen suppressor (I took letrozole). I had done my research, so I knew that having a mastectomy versus lumpectomy does not improve survival rates or quality of life. It is such a major operation and has such an effect on your immune system, etc. I also have other health concerns, namely, diabetes, which I’ve had for 35 years, so there’s always the chance I may not heal like a normal person. I was never sorry I had a lumpectomy. Fast forward to July 2024, and I was diagnosed with a second new breast cancer in the other breast. It was the same type as the other, no lymph node, (I just learned that breast cancer cannot travel from one breast to the other. So if you get a cancer in the other breast, it is a new one.) I was shocked at the diagnosis since I had had radiation, and I took the estrogen suppressor for five years, changed all my diet to organic, drank only bottled water, and all the other things they tell you to do. And it had only been seven years since my last diagnosis. I asked my doctor why I got another cancer so soon. Her answer was “cancer does what it wants.” I did not have a choice of cyberKnife this time. They had another new technology called Omnipod. But it is five treatments over the course of three weeks. Faced with that, I was very nervous. They told me it would be the same amount of radiation as the one day, CyberKnife, but I was still not very happy. Well, I did the treatment. The only uncomfortable part was the pod: they use this bionic tape to make it stay on you and when they take it off, it hurts. But other than that, I have had no side effects, except extreme fatigue after each treatment and I went home and slept for about four hours. But that’s it. One thing about radiation that I found out, and it made me feel better about it, is that the radiation only goes where the machine is directing it to go. It does not travel all through your body. I will say that getting cancer, a second time made me think about getting a BLM, but I have other health issues now, including DVT, and the operation is a very long one and requires so much more recupe time. I am also single and I can’t really afford to take off 6 to 8 weeks of work at this point in time. While facing radiation, I kept reminding myself that I was stage one with a very slow growing cancer, that was not in the lymph nodes, and that I had choices. I look at it as just one more bump in the road, a road that has been a long one with a lot of bumps, but I’m still here and in fairly good shape. Try to look at your situation in the same way. And if you feel like sleeping the rest of the day or two days or whatever, then do so without guilt. (A note about my latest cancer. My yearly mammo revealed a large “architectural defect” very close to the nipple. I had several sets of x-rays, a sonogram, and finally five biopsies before they diagnosed the cancer. It was not a lump, per se. When I went under the knife, I had no idea what I was gonna wake up to. It turned out the architectural defect was not cancer, but it was hiding a very small cancer underneath it. Google architectural defect. I had never heard of it and I’ve done a lot of research on BC. Essentially, as the cancer grows, it pushes the surrounding tissue out of whack. So, some cancers are not a palpable lump, at least when they’re young.) My new bump in the road is that taking the letrozole for five years has given me osteoporosis. And now they want me to take letrozole for another five years. But they also want me to take one of those osteoporosis drugs. Every one of them that I have read about has made me want to run in the opposite direction. I have to say I am quite terrified of taking any of these drugs. I am afraid I will be in the 10% who will get the serious side effects like jaw necrosis, for one. So that’s my dilemma at this time and I have not made a decision.

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.

@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/