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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 20 hours ago | Replies (612)Comment receiving replies
@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.
Replies to "@jmab yes I chose it because of what the surgeon said. She said with a lumpectomy..."
@wews I was diagnosed with DCIS 24 years ago followed by lumpectomy and radiation. No issues until 18 months ago when nipple inverted and diagnosed with ILC. Surgeon suggested mastectomy & reconstruction. She said NO to anastrozole due to osteoporosis, yes to tamoxifen despite my mother having died of uterine cancer and my anti-depressants.
I’ve changed surgeons to one who actually discussed this with me in depth. Seeing a new med onc next week (just a week before I turn 80) to discuss options that I’m willing to accept.
We ALL have different life situations and expectations. We ALL read, research, discuss as evidenced by the discussions here! We ALL are looking for positive outcomes; not all of us get what we want.
My prayers are that each of us is let to the best possible answers as we look for guidance and support during our journeys.
Love and prayers to ALL…
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@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!