Confusing news from oncologist

[StayingSTRNG]

Hi all, looking for some insight or direction based off of any experiences or similar ones. My dad started chemo in October with a PSA of 126. After 2 rounds of chemo, his PSA rose to 153, we saw some increase in his bone metastasis as according to the scans (posted about this previously).

My dad has not been able to continue treatment yet due to severe pain, lack of mobility and several hospital stays. He had what we thought was a stroke but turns out we don’t know what happened there. Now he is back at home. He barely eats or drinks and is down to 97 lbs. He’s confined to his room with only a few visits to the bathroom 10 shuffles down the hall.

Due to the nature of his last hospital visit (stroke like symptoms etc) and the lack of an answer, the MO has stated that she does not believe any of his current status to be cancer related. She said that his cancer is under control and thinks he should go back to the hospital to repeat the same tests he spent 12 days there for already. She also said the scans were clear although as I stated, there were areas of increased bone Mets. The MO herself has not seen him in months as she was away, we have been speaking mainly with her resident up until now. I feel as though she is dismissing cancer as a cause for his deterioration because she hasn’t really been seeing his decline over time, is it reasonable for me to ask her why she believes for certain that my dads status has nothing to do with cancer? The last time his PSA went up, his scans showed nothing and the cancer was indeed spreading I worry that the same thing is happening and it’s getting dismissed again

we are all so confused and have one side of palliative care doctors speaking to us about end of life and the MO saying that his cancer is under control. What do you think (sorry this may have been a word vomit)

[Tall_Allen]

Cancer affects the status of almost the entire body, but that doesn't mean the solution is always to treat the cancer. Sometimes, it makes more sense to treat the symptoms. Have you tried marijuana to increase his appetite?

[StayingSTRNG in reply to Tall_Allen]

I tried but he was not comfortable with it. We just talked to the MO and she basically said she didn’t feel like further treatment would improve his survival at this point. But he still wishes to carry on with a treatment (I think he’s honestly scared of the outcome if he doesn’t continue).

She said chemo is not really an option, but she will look into Xofigo if he has bone-only disease. She again isn’t confident in that and says it’s risky. He has mets to bones and lymph nodes, so not sure whether or not Xofigo will be good for him or not.

[SteveTheJ in reply to StayingSTRNG]

If you live in TX, get in the Compassionate Use Program right away. PM me for details.

[Gearhead]

Have physicians other than your MO examined your father with the objective of diagnosing his initially-believed-to-be stroke condition? If not, and if he has a primary care physician, start there. If specialists are available, perhaps try to have a neurologist examine him. The decline in his health seems to be more than can be attributed to his cancer and cancer treatment.

Just a comment from someone with no medical qualifications.

[StayingSTRNG in reply to Gearhead]

Thanks for your input! Yes, a neurologist did see him, he had a brain MRI and CT, both of which showed no evidence of a stroke. Only showed mild chronic vessel disease. He was in hospital for 12 days and they basically attributed the symptoms to dehydration and poor kidney function in the end (he has bilateral nephrostomy tubes). What you are saying is basically what the MO was feeling as well and so she said for him to maybe go to the hospital to see if there is maybe something they missed

We could take him to get more tests but he’s adamant against it and feels like it’s his body and choice (which is fair). The trip is torture for him. He can’t get up and down the steps and he really can’t sit, stand or walk very much so I get it but we are just lost.

[Gearhead in reply to StayingSTRNG]

Understood. Thanks for taking the time to respond and explain. You are indeed dealing with a frustrating and serious dilemma. Staying strong must be easier said than done.

[j-o-h-n]

Based on your past posts it appears that your dear Dad is about 70 years old. At 97 lbs., you must get him to at least drink "malted milk/shakes", and if possible get him to eat plain Greek yogurt. I feel for him and I feel for you...God Bless all of you.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/28/2023 6:04 PM EST

[StayingSTRNG in reply to j-o-h-n]

Thank you for the food ideas, much appreciated. Truly.

[Brianne07]

Forget about the resident try and see a professor