Info overload with resistant patient

[Spagnoli12]

I am overwhelmed by all the info as I try to learn what can help the person I advocate for. He is terribly resistant to info trying to avoid any stress as he can't handle it and will blame the one helping him if he gets overwhelmed. So, what can I do? The burden of making choices for him while not discussing it is rough.

[Tall_Allen]

I know how hard it is to step back when you care. But you have to remind yourself that it is his life, his decisions, and you do not control him. You should not be making choices for him, even if he asks you to. I often try to judge how much info to mete out. I try to keep it relevant to the current situation, but there is often too much.

[Spagnoli12 in reply to Tall_Allen]

Thanks, Tall_Allen. The decisions are often about food, vitamins, and now, this citrus pectin. I don't say much. Often just mentioning casually some helpful food etc. He's newly on the hormone suppressants bical, lupron, and abiraterone with pred, and I'm worried about the endocrine cancer down the road. He's Gleason9, bladder intrusion by prostate, no surgery possible given its messy involvment within the area, as well as proximate lymph glands, but no apparent bone mets. He's got the bilaterals, from an ER acute crisis early on, now internal stents scheduled for March. I want to ask the doctor the ramifications of the treatments, but I can't, and and the doctor seems resistant to explain beyond what he deems necessary. His last psa after being on bical was 10, down from 48. I know the additional meds may cause a temporary spike, but can't speak to him for fear of creating anxiety. I am concerned that the treatment might be an overreach as he did well on bical alone, but I'm too new at this to even consider the validity of my concerns. I've been a friend 35 yrs. and his familiar character structure dominates how he's handling this, as I knew it would. I want the best, longest life outcome for him, but....I need to be more educated myself in the complex often conflicting info re: pc. Then, how to subtly present info to him to keep him on an even keel. Aauugh!

[Tall_Allen in reply to Spagnoli12]

You should be aware that there is insufficient evidence for any of your recommendations. The alarmist posts about neuroendocrine cancer that I've seen here are completely misguided and result from people drawing erroneous conclusions from research they don't understand. I'm sure you are well-meaning, but is it possible that his doctor understands all this better than you do? A little humility is required from patient advocates. If you could just accompany him to doctor visits, take notes, and debrief afterwards, that would do a lot more for him than raising doubts about his treatment.

[Spagnoli12 in reply to Tall_Allen]

I haven't raised any doubts as anything I read here or elsewhere I keep to myself. Even his doctor has no idea I have concerns. Thanks for reducing my concern over endocrine cancer. Those posts were troubling. When he goes to the dr. I am there as well, but the dr. only looks and speaks to him, so I take notes and we message him later if any questions on my friend's part arise. Humility has been my problem, but not as you inferred it l, I've shown too much of it to assert anything in the presence of the dr. This site, with all the good and occasional scary info, has been my only way to learn what the implications of this illness are going forward and how to best handle them. It is invaluable. Thanks, Tall_Allen

[Tall_Allen in reply to Spagnoli12]

I do raise concerns about treatment options during patient visits, but I raise them as questions rather than statements. If there is evidence I wish to discuss, I ask the patient to email it in advance with a short note "I'd like to discuss this with you at our next visit." I only send links to high quality studies published in peer-reviewed journals. I have found that this raises the level of discussion - I've found that all doctors at top institutions are very happy to engage with high level data. In fact, the only "problem" is that the doctor talks to me and not the patient, and sometimes the discussion goes over the patient's head. It's not really a problem because decisions seldom have to be made on the spot, and "we'll get back to you" is a good answer. Most doctors want the patient to be involved in decisions about his therapy.

[Spagnoli12 in reply to Tall_Allen]

I never make statements in these appts.

[Hidden in reply to Spagnoli12]

Why not?

[Spagnoli12 in reply to Hidden]

To avoid sounding like I'm telling the dr something. Asking is easier.

[Schwah]

Is he refusing to move forward with his oncologists recommended treatments?

Schwah

[Spagnoli12 in reply to Schwah]

No, not at all. But he doesn't want, I guess you could call it, self empowerment, through asking questions, or reading valuable sites like this one where knowledgeable people share and help each other. That's where I have to be present --where he refuses to go, so to speak. It's daunting, sometimes.

[NancyWorld in reply to Spagnoli12]

You are a good friend.

[Spagnoli12 in reply to NancyWorld]

Thank you. As we all know, it's tough to help from the p.c. sidelines when the one "in the game" is not up to the fight. I probably wouldn't be either.

[Schwah in reply to Spagnoli12]

Everyone is wired differently. My wife was the same way during her breast cancer treatments. I think

Some of us cope by putting our heads down and just doing the treatments. I stepped in and filled that roll of advocator for my wife. Sounds like you will need to do that here if you’re willing. I actually was happy to do it since it made me feel like I was doing something positive to help.

Schwah

[Spagnoli12 in reply to Schwah]

That's what I'm doing as well, but you can't share info with him.

[Schwah in reply to Spagnoli12]

That’s a problem. Just join him at the dr and bring it up there.

[Spagnoli12 in reply to Schwah]

That's the difficulty. If the question brings him info he's not up to hearing, then what?

[Schwah in reply to Spagnoli12]

The only thing that matters is his treatment plan. His prognosis is of no consequence if he doesn’t want to know. As long as you help him get the best treatment plan and he goes along with it then nothing else matters

[Spagnoli12 in reply to Schwah]

That has become my default position.

[Hidden]

It is overwhelming! I could fill up the back of my Tundra with everything that is being taken as supplemental or complementary on our site. For some it is enough to simply follow the SOC as set forth by the MO. When decision making causes undue stress that is not healthy and again for many with PC the ability to handle stress is diminished. It is his life and if he feels more tranquil by not discussing additions to SOC that may have to be respected.

[Spagnoli12 in reply to Hidden]

Agree. I'm avoiding helpful stuff because I dont want to upset him. Thats tough to do.

[Jimhoy]

You’re a better friend then him. Maybe he should be made it understand that. That had to be done to me!! I handled things all wrong. Kept my wife, close family and best friends sidelined. Most of them, completely out of the loop. I couldn’t get over the emasculation of my treatment and the thought of people knowing what I had become. I became recluse and took my wife with me!!! A lesser woman would have booted my ass out!!! God bless her!!! Anyway, I learned that very late and am still correcting it. I believe it ultimately caused my depression and anxiety!

The severe cognitive decline contributed to my poor decision making later on and luckily, I came to my senses about this before ADT took my mind!! I dread to think how I would be if not!!!! So not saying that will happen to him but don’t put it off. One never knows!!

Seams like you can speak quite intelligently about the subject and that’s a huge start! Keep learning, keep fighting! I took my best friends (including my wife) for granted and it took an aPC Dx to realize it...... shame on me!!!!

Jc

[Spagnoli12 in reply to Jimhoy]

Thank you Jimhoy. It's tough.

[Spagnoli12 in reply to Spagnoli12]

You got pc, Jim, you didnt become anything. You're still you, probably braver and stronger than you were. The hormone supressant does not change who you are as a human being or make you less by any stretch, but it is extremely difficult as he feels the same way. He keeps saying, "I'm a girl now. " He tries to be darkly humorous. I tell him you're way more than an erection, but I get how psychologically difficult this is. Manhood is between your ears, in your soul.

[Magnus1964]

This is obviously overwhelming for him as it is for a lot of patients. What he may need is some good news to regain some balance. The casodex seems to be working and if it takes is PSA down enough and he can get through the stents he might become more receptive to new information.

[Spagnoli12]

Thanks Magnus, I hope so.

[j-o-h-n]

Ask him if he knows what's sticking up in the air when you bury your head in the sand?

You're a good friend indeed.... ⭐⭐⭐⭐⭐

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/04/2020 7:23 PM EST

[Spagnoli12 in reply to j-o-h-n]

I think he would say he'd like two things sticking up in the air. The supressant is bothering him, for totally valid reasons. He remarks about the hot flashes now coming and remembered how I complained about them years ago. He's cynically humorous about it sometimes which is better than being overwhelmed, I think. "A day at a time" never had better application than with this cancer.

Thanks, J-o-h-n.

You said Good Humor...now I want an ice cream bar....😦

[j-o-h-n]

My treat (chocolate chip)...🍦 🍦

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/04/2020 8:15 PM EST

[Spagnoli12 in reply to j-o-h-n]

🍦here's yours.

[j-o-h-n]

anticagelateriadelcorso.com...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/04/2020 8:17 PM EST

[GoEZ]

The best advice I have received “if what you are doing isn’t working change what you are doing”. You don’t have to be his advocate. Be his friend. Don’t talk about his illness. Talk about anything but his illness. Put on a happy face and make things normal and when he acts up tell him to call you when he is feeling better. Most tantrums are performance art and aren’t as satisfying when nobody is watching. I have a lot of caring, loving, type A people in my life. When I act out PC is the least of my problems. Most of us come around and start acting better.

Take care of yourself. This road is long and you can’t burn out too soon.

Good luck

[Spagnoli12 in reply to GoEZ]

Thanks.

[Spagnoli12]

New side effects. Nausea, lots of hot flashes. Some stiffness in lower back. Allfrom hormone drugs,I guess. I feel bad for him.

[Hidden in reply to Spagnoli12]

Those are typical for sure . Comfort him anyway that you can .. best wishes 🙏