u/Here_We_Go_Again30

This is my third baby and this is not a problem I've encountered before.

This started 5 nights ago. She'll wake up hungry every three hours, but then she won't latch. She just sits there with the nipple in her mouth doing absolutely nothing. But if I take her off the breast, she starts rooting around and crying. Put her back and she just.... does nothing. She latches just fine throughout the day, but it's like she forgets at night.

I've tried pumping and offering a bottle. Same issue. She can take a bottle just fine during the day, but at night she just basically licks it instead of latching. My husband got her to take a bottle last night but it took an hour. Very atypical for her.

It takes ages to get her to take enough milk to get back to sleep. She's definitely hungry, because as soon as she does get milk, she's out again for another couple of hours. And as soon as the sun comes up in the morning, things go right back to normal.

What could be going on here?

My family member (currently early 60s) was diagnosed with clear cell RCC about 7 years ago. It was an incidental finding on an ultrasound for an unrelated issue. There was one tumor in the right kidney at the time. This was resected, with loss of only about 5% of the kidney, per the urologist. CT scans every few months for the next several years showed NED. About 2.5 years ago, a CT suddenly showed numerous bilateral renal tumors with multiple bilateral adrenal mets. I believe the largest renal mass was in the 4-5cm range. Due to the presentation of the tumors, this was initially believed to be caused by Von Hippel-Lindau syndrome. However, genetic testing was negative for VHL. After finding out this is not VHL, my family member decided against any additional surgical treatment, and for a long time, declined to begin any sort of medication regimen. The tumors remained stable for a while, maybe about a year, then began to show minimal growth. Eventually my family member did agree to begin immunotherapy, about one year ago now. It's been very successful so far, with most or all tumors shrinking, and some being so small they're not measureable. My family member is contemplating stopping treatment. I don't entirely understand why.

From what I've been led to understand, recurrent bilateral renal cell carcinoma with bilateral adrenal metastasis is a relatively uncommon presentation. The oncologist made it sound like it's rare to see this outside of VHL syndrome, but this was tested for and was negative. I'm not entirely sure what my question is, here, but I guess if I could sum it up, it would be... What should we expect? My family member is hoping the cancer is going to grow slowly enough that by the time it causes (in my loved one's own words) "real problems", they'll be old enough that "it won't matter". Of course I understand that there's no predicting how fast things may spread, but my instinct is that there's no way it doesn't metastasize further, or grow big enough to cause major problems, sooner than my loved one expects if they stop treatment.

Can anyone share any insight?