Mom Starting Chemo Tomorrow. Just Looking for Support and a Bit of Optimism.
Hi everyone. I'm glad to have found this subreddit since this is such a rare cancer. My (33F) mom (67F) was diagnosed with intrahepatic unresectable bile duct cancer four weeks ago as of tomorrow and will also be starting her combined chemo and immunotherapy treatment tomorrow, but it's been over 2.5 months since this whole saga started. She had just retired in early June and was scheduled to have a shoulder replacement basically right after that. In May, several weeks before her surgery, she had blood work done just to make sure everything was good to go for her surgery.
She sees an endocrinologist for hypothyroidism and has blood tests done every year; her last endo appointment and blood tests were in November 2025 only six months before and everything looked totally normal then, so that really puts into perspective just how aggressive this cancer is. Her liver enzyme levels were way off in May, though, which lead to her PCP basically calling her back in immediately once she had the results and luckily she was able to order an ultrasound and refer her to a general surgeon at the nearby hospital that same day. The ultrasound showed some kind of cyst on her liver but they couldn't determine what it was, so she was scheduled for an MRI and referred to a liver specialist (or referred to the liver specialist who then ordered the MRI, I can't remember which), but they wouldn't be able to get her in for the MRI until about two weeks after her shoulder replacement.
So, she has her last day at work, has her shoulder replaced, and then has her MRI while recovering from that. The results were very much not good, leading to a biopsy about two weeks later. In the week and a half of waiting for the biopsy results her cousin that she had been very close to who had dementia suddenly died, which was very sad news for her. The day of the funeral my parents couldn't stay after the service or go to the cemetery because they had to rush home for a virtual appointment with the liver specialist to receive the biopsy results.
Throughout this time we had been thinking it was likely liver cancer (and obviously hoping it wasn't cancer at all), but it turns out it was bile duct cancer inside her liver which I believe has also metastasized to her liver. Because of the size of the tumor and I believe other factors as well removing it isn't an option and a liver transplant wouldn't be an option for her, either. I went with her and my dad to her first oncologist appointment a little over a week ago and though the doctor had a friendly and upbeat attitude (I guess you have to in that profession) he also didn't sugarcoat things. This is a very aggressive cancer that we still don't know a lot about, and my mom's case is considered incurable. He didn't give a prognosis in terms of life expectancy or an official stage; we won't know yet until she has her PET/CT scan in just under three weeks, so the agony of waiting for answers still isn't entirely over. He did estimate that it's likely at least stage 3B at this point, though.
However, the doctor did seem optimistic that there was a good chance that chemo combined with immunotherapy could shrink the tumors. It still wouldn't be resectable, and I know a lot depends on her upcoming PET scan and further tests, but depending on how much it shrinks she would likely be able to have a catheter installed to deliver some kind of treatment directly to the primary tumor. I think this might be either chemoembolization or radioembolization, but I'm not sure.
She just got her chemo port installed four days ago and treatment starts tomorrow with two chemo drugs (can't remember which right now, sorry) given at the same time as an immunotherapy drug. This first round of chemo will last 12 weeks all together until late October, four cycles of three weeks each of two weeks on, one week off. We all initially thought she'd have to have chemo several days a week during her "on" weeks but thankfully it's only once a week. After this round of chemo is done I believe she's supposed to continue with the immunotherapy but what else is planned for her treatment is still up in the air since we don't know the stage yet and of course she'll have more scans done at the end of chemo to determine how well she's responded to it.
I feel like my emotions are still all over the place right now. The news was such a huge blow even after living with the anxiety of wondering whether or not she had cancer for around six weeks since that blood test. In a weird way she and I are both grateful that she had to have her dreaded shoulder surgery now, because if she hadn't her next blood test wouldn't have been until November and who knows how much more advanced the cancer could be by then? At first this gave me hope that it had been caught early since she hadn't shown any symptoms, and for a few days I was resisting looking things up online about bile duct cancer because I didn't want to drive myself crazy with it. But eventually I caved and I felt like my illusions had been shattered since I now know this cancer is so sneaky and fast-moving, that it often doesn't show any obvious symptoms until it's too late.
Before this all happened, felt so confident I'd have at least another 20 good years with her, that she'd live to 90 based on her relative health and her parents' ages when they died. Now I'm praying that she just makes it to her 70th birthday a little over 2 years from now and it'll feel like a miracle if she does. She's determined to beat the odds and live longer than that, and I feel her visit with the oncologist boosted her confidence at least initially, but I also know that she's a very practical and realistic person and understands that the 5-year survival rate of this cancer is extremely low. If she turns out to be stage 4 and is given a year at most to live, I would be devastated but not surprised.
I guess I'm just trying to cling to whatever bit of hope I can that her getting this bloodwork done when she did was meant to be, that it's a sign that it hasn't spread too far yet and that with a great oncology team behind her and force of will the cancer can be slowed or stalled indefinitely even if she can't be cured. It just feels so cruel and unfair. She only just retired and now she may never get to enjoy it. My parents' 40th wedding anniversary is coming up this year and I was planning on throwing a big party for them, but now that's been cancelled since we don't know yet how she'll be feeling by that time. My parents love to travel, and now that she's retired and my dad is set to retire in another two years or so, I'd thought that they'd be able to spend a lot more time exploring more parts of the world, but now I don't know if that will ever happen. I'm just grateful that shortly before all of this in late April I went with them on a trip to Las Vegas, Bryce Canyon, and Zion. It was one of the few major vacations I'd taken with them since I was in high school and we made so many wonderful memories together; now all the photos I took of us have another meaning because I'm wondering if that was the last time we would share those kind of experiences together.
The one bright spot is that the doctor seemed confident she should be able to go to a wedding we were all invited to in mid-October (it's for my best friend and I will also be a bridesmaid; her parents and my parents are also good friends). I really hope she'll be feeling well enough to go, but thinking about it brings up lots of other complex emotions because I keep having the recurring thought that she may not live to see me get married one day. And then I feel guilty because it sounds selfish and like I'm making her cancer all about me. I also can't predict how she'll feel or how I'll feel when confronted with her appearance due to chemo. She's not vain about her hair, but hearing from the chemo nurse that hair loss is expected as soon as the 2nd week of treatment was a shock to me, and I dread seeing her bald because I know it's going to make everything feel more real, which sounds silly because I'm sure that seeing her sickened from the chemo will make it feel plenty real to begin with. She wants me to help her find a dress for the wedding but is putting off shopping because she doesn't know how much weight she might lose by then.
I don't really know how to wrap up this post. There's more I could say, but I've already typed more than I thought I would and this is getting extremely long. Any support, advice, or hope that anyone can offer is greatly appreciated. I both hate that I'm here on this subreddit and also grateful that it exists.