Greetings everyone. I'm here this evening wondering how often you (or your loved one) meets with their oncologist during active treatment?
I'm trying to gauge if my mom is getting appropriate, or typical care. A quick background- we are pretty new to this. She was diagnosed in mid-April with colon cancer with liver mets. Three days after diagnosis she had a port put in, and a week after that (as soon as insurance cleared), she started FOLFOX. She was really in a bad way at the time of diagnosis, unfortunately the cancer was found due to her symptoms of indigestion, nausea, and pain.
Now that the dust has settled, we are starting to wonder about the quality of the information we've been given. We met with the oncologist during her initial hospitalization at the time of diagnosis, where we were told that clinically the cancer appeared to be adenocarcinoma and had spread to her liver. We then had a follow up visit with her a week later, where this diagnosis was confirmed. At the time, we were pretty much deer in the headlights. She was prescribed a ton of medications (anti-nausea, appetite stim, painkillers) to deal with her symptoms and the chemo. The oncologist said that she could have 3-5 more years with treatment. My mom was barely able to eat and was so weak. I wondered and worried at her starting chemo. There were so many meds and they were so confusing, that we totally messed them up those first few weeks and didn't get straightened out until our next appointment, which was with a PA.
Anyway. Here we are 6 weeks or so later, and she's been through 3 rounds of FOLFOX now. The good news is after a rough spell and another hospitalization after the first treatment for a partial blockage (that cleared on its own), my mom is doing a lot better. She is now eating like a normal person, having regular bowel movements, and is feeling her energy returning. We even went out to dinner tonight! However, since we met with the oncologist before beginning treatment, she has appointments every 2 weeks with a PA who really doesn't seem able to answer questions about the plan. Apparently, she only meets with the oncologist every 2 months. Is that normal?
Now that we've had time to take all this in, we've starting doing research. No other treatment options were ever mentioned to us. The oncologist never even actually explained that she was stage 4. Obviously we figured this out by our own research and learning that when cancer has spread to another organ it is considered stage 4, but is it unusual for this not even to be mentioned to a patient? Also, I see lots of chatter on this forum about genetic stuff and many people's siggys have mention of genetic info. This was never mentioned to us. Is it standard to run these kind of tests at the beginning of treatment? I also see discussions about immunotherapy and other trials, also never mentioned.
My mom's partner and I are in a bit of disagreement. My mom's partner feels like we are not getting adequate care at this point. I feel like my mom was in a bit of a triage situation and the oncologist just acted really fast to start treatment. From poking around a bit on the internet, it seems that FOLFOX is kind of the go-to, best chance to knock back advanced colon cancer a bit. I feel like perhaps the oncologist just acted fast and that saw that at the time, we were pretty much unable to absorb much information as we were all still reeling from the shock and despair of the diagnosis. Also, my mom was so weak and having serious gastro problems, and at the time we started treatment there was talk of wondering if she would need surgery or not making the long term plan really uncertain.
But only getting a chance to talk to her every 2 months? Wondering if this is normal. And given the lack of info, if this were your mom would you be looking around for other options for treatment?
Thanks for any perspective you all can offer, and thanks for taking the time to listen. This is such a great community and I am happy to have found it! I have a close friend who had stage 3 colon cancer (and beat it!) a few years back who told me about this place.