That is not entirely unusual. It’s best if you can determine who is leading up the treatment team (and if there isn’t one person try to get someone into that position) and get your information from that doctor. My husband’s oncologist had a “nurse navigator” that also acted as a source of solid information and go-between between the family and the doctor (because doctors can be hard to get ahold of).
You do not need to do a bone scan or PET scan to find out that the cancer has spread. CT scans, ultrasound, and x-rays can also give this sort of information. Here is a link to some intro information on what cancer staging means.
If the bladder cancer has spread to the pelvic lymph nodes the odds of surviving 5 years, with treatment, is 34%. If it has spread further than that, the odd of surviving 5 years is around 5%. If either of those is the case then yes, your father’s case might be described as “terminal”. Bladder cancer can be a real bastard. There are other factors like how aggressive the cancer is in his case.
However, I know from seeing some of the medical imaging that ultrasound can show enlarged lymph nodes even a layperson can see. If find CT scans to have so much going on that it’s harder to pick something like that out, but if it’s pointed out yep, you can see there’s something amiss if there’s a tumor in the bladder. When it spread to my husband’s bones again, although I am in no way trained to find these sorts of things, I, too, could see defects in the affected bones in an x-ray.
So… you don’t need a PET scan to find the cancer.
The standard chemotherapy for bladder cancer is pretty old school, but these days they can give you medication before the actual chemo to reduce the side effects like nausea, itching, and so forth. Typically, they’d weigh my husband, draw a blood sample for analysis, and give the medication for side effects. There’s be about an hour wait for those to take effect, then he’d get the actual chemo. Yes, chemo sucks, my husband said that he felt poisoned for the next two days or so, but it really did help with the cancer symptoms. It enabled him to come home for awhile instead of being stuck in the hospital. Then it stopped being effective so it was stopped. Cancer can develop resistance to chemo after which there is no benefit to continuing.
If your father does come home then anyone caring for him after he gets a chemo treatment needs to take precautions to avoid exposure to the chemicals coming out of him. If that’s the case, I have a couple boxes of chemo-resistant gloves here, I’d be happy to send you a box although all I have is size “medium”. I have a few other items here that might be of use, you can PM me if you want to know more.
Find out who said that. Unless it was a doctor they shouldn’t have done that (and maybe not even a doctor, because you have to be very careful about using language like that).
Consider, although I know you don’t want to, that that might be the actual truth. I didn’t want to hear that my husband was terminal but I’m very glad the onocologist (and others) were that honest with us. It made a difference in how we spent his remaining time, and also allowed us to, as they say, put his affairs in order which made things easier for me after he was gone.
If it has spread beyond the bladder into the lymph nodes it’s at least stage 3. I already quoted the 5 year survival odds for that, which are pretty dismal and only get worse for stage 4. As I noted, it’s possible for something like an ultrasound to give you that basic level of information. Further testing serves to refine the exact staging and may affect the treatment approach, which can be valuable information, but the doctors may in fact already know the rough stage of the cancer.
Who is the lead doctor for all this? (If there isn’t one, get one - treatment by committee can quickly turn into a mess)
Who is the person to go to for information? (In return, the doctor(s) would appreciate having someone designated as your father’s health representative to act on his behalf should he be unable to do so himself. This isn’t necessarily just at the end - due to treatment side effects and the effects of cancer my husband experienced several episodes of temporary delirium or incapacity during which I had to make decisions on his behalf and speak for him. He would then get better and resume speaking for himself until the next time).
What is the most likely outcome for
- his cancer
- the current treatment
Are you treating him hopes of
- remission?
- increasing his remaining life span?
- keeping him comfortable?
What are his options at this point?
What is the treatment plan?
What is the next step if the current treatment stops working or needs to be discontinued for whatever reason?
In addition to the hoped-for goal of treatment, what is the current treatment going to do to him in terms of side effects, pain, and other possible complications and how will those things be addressed?
There’s probably more, but that’s just off the top of my head.