Hi CLLers, happy August 2019.
I wrote a couple months back to ask about people's experience with radiation for SLL. I had detectable SLL in one node only, received a tiny bit of radiation in 2017 (4Gys), then this year my oncologist wanted to re-stage to see if more radiation would be helpful. I was conflicted about pursuing more radiation but interested in new imaging.
My 2019 CT/PET scan didn't show any new SLL but did reveal an anomaly in my right breast, which hadn't been picked up on mammogram. It turned out to be Stage 0 breast cancer (DCIS), which is being treated now with lumpectomy and radiation. The prognosis on this non-invasive cancer is excellent (with treatment), but maybe about half of untreated DCIS will progress to invasive cancer, with much more treatment and worse prognoses (depending on the stage when they find it).
It's funny . . . while I'm seriously bummed about getting a SECOND cancer before I'm out of my 40s, I haven't panicked at all (even before I knew it wasn't invasive). I feel like I adjusted my relationship with mortality back in 2017 with my SLL dx, and I'm just trying to live every day fully now and can't do any more than that! And breast cancer is so statistically predictable compared with CLL/SLL . . . and curable too.
The breast cancer would 100% not have been detected this early if not for the SLL. It's very possible I wouldn't have known about it until it'd progressed into something much worse. So . . . yay for SLL? I dunno. Certainly yay for good health care. (Also, the biopsies for the breast cancer show a little SLL in lymph nodes other than the one I knew about, so it answers the question about local radiation for SLL: it wouldn't do any good).
I saw a youtubed lecture recently by Kurt Vonnegut (one of my fav authors) and his takehome was "you really can't tell the good news from the bad news" . . . maybe that's not always true, but I think it's mostly true. Recognizing that, for me, makes the "bad news" a little easier to deal with.
And having this community to dip into when I'm feeling uncertain is a great comfort. You inspire me tremendously. I appreciate reading everyone's stories and shared challenges and successes. Thank you for making a wonderful community.
Take care!