My MO seems fine. He answers all my questions, and is not defensive. I have always understood his answers and reasoning in the moment. But I leave feeling sidetracked and confused about why I agreed with him.
He's both newly minted as an MO and so far every conversation is leading back to SOC. And I don't get offered alternatives; I'm bringing everything up.
At my next meeting I will have Been on Lupron/zytiga+p for a year.
I may show up wanting an Orchidectomy. I may challenge his Lupron Forever/no vacations approach. Again! I may even go back to advocating for some kind of more aggressive approach.
I've got a couple months to prep myself. Again. But I'm getting less sure of myself and my info at each encounter.
And my Manopause cognition is making it hard to talk, especially under pressure!
I feel like I'm losing my fight for informed self determination. Despite my self-education and the invaluable opinions and support here, I have not had an impact on my MO or my treatment.
Having my smart and more self confident son go with me is what I should do, at least that.
Sigh.
I don't have any questions for y'all tonight. I'm just tired of needing to know more than my doctor in order to trust that I'm being well cared for. And I'm just not up to it. But I'll keep trying.
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I've been on Lupron + Abiraterone + Prednisone for a year and a half. When my PSA dropped and held below 0.2 for 3 months. I took a break for 7 months. This was under UCSF. The theory as you know is that a break might stop the tumor evolving around the treatment. However it's a complex issue and my oncologists were divided. I went for having a clearer mind for bit. As I mentioned above I got 7 months. The PSA began to move up and then jumped to 71. This wasn't unexpected though I pushed it a bit because of Xmas & New Year. A month ago , I went back on Orgovyx which I find cognitively easier than Lupron plus Abi and 5mg Prednisone. PSA dropped to 1.4 in a month. So there you have it. I try to track my mind and meditate and take certain supplements and so on. I work and depend on my mind and some days it's fine and other days not so much. I like my life though. It's always too early to despair. Cheers
A 7 month break after 18 months sounds great to me!As I consider Orchiectomy one of the things against it is that it will be much harder to get an MO to get me on testosterone for vacations.
"And my Manopause cognition is making it hard to talk, especially under pressure!
I feel like I'm losing my fight for informed self determination. Despite my self-education and the invaluable opinions and support here, I have not had an impact on my MO or my treatment."
Well said! I suspect that many of us, especially brothers near my age (80), can identify with your post.
Sorry to hear of your predicament, as if you don't have enough on your mind already you seem to be in doubt as to whether you are getting the best care or not and at the same time being unable to argue your case with your MO. Perhaps you should either get a second opinion or get counselling ,you need to be at peace with the treatment you are getting otherwise the stress will wear you down. Best wishes.
I can understand that you are tired. Maybe a few nights of sleep will recharge your batteries. Our mood is sometimes a roller coaster. Be patient to yourself.
For me it’s fact, that your rarely find doctors, who are fully up to date AND take/have time to get a holistic picture of every single „customer“. So, we have to be the pilot of our life and steering the bus.
I can only encourage you to seek for support, e.g. as you said, getting your son in the boat. There are many wife’s, children, grand-children of PC warriors in this forum supporting their love ones. That’s more common as you might think. Go for it, too!
You are the master of your destiny. Ask for what you want. Let him argue against it. If not convinced after talking to your confident son, seek another MO for an opinion and perhaps treatment.
I was going to suggest bringing an advocate with you; bringing your son is a great idea. You may wish to create a list of questions/topics to discuss at your next appointment.
I keep telling people here. If you don’t like your doctor, find a new doctor. Your doctor should be able to listen to you and make sure you are on board with the suggested treatment path.
• Give the doctor a heads-up that these (whatever they are) are the topics you want to address at the next meeting- email in advance of the meeting - the more notice the better
• Email the links in a peer-reviewed journal of any topics you want to discuss
• Write down your questions, leaving space to write down notes of his answers (or let your son write them down) - discuss with your son afterward to get concurrence that you both heard the same thing
• Let the doctor know if you are willing to risk a clinical trial
• Pump up the doctor's ego - be self-effacing (note: women are usually much better at this than men are)
Never:
• Surprise the doctor with a question - the reaction to a surprise is always the fallback position (the SOC)
• Pull out an article during the meeting- there is no time for him to consider it
• Tell him about something you heard from a friend or on the Internet --that is just inviting him to dismiss it
• Ask him things he can't know - which is better? will it work? how long do I have?
• Let your ego get in the way - it isn't important to be "right" - it's important to find the best treatment for you, even if you got it wrong initially
In other words, manage the meeting the same way you would a business meeting.
That said, this didn't work for me and the patient I was with once. The doctor was brand new, and his answer to everything was: "This is an NCCN hospital, and we only follow NCCN guidelines." We found a different oncologist.
I discovered at the beginning of this year (with a new insurance plan, and thus new MOs to save some of my wife's income) that experience matters.
I "test drove" two MOs, neither of whom specialized in PC per se, but had experience treating it. But one was only several years in the biz, while the other was several decades in. By default, he has seen a lot more.
That does not mean older docs are always better, because they can get stuck in their rut and become closed-minded. But my "older" doc is just the opposite: it was HE who was completely up on all the newest BAT research and willing to try it, while the younger doc had never even heard of BAT. His approach was play-it-safe, cookie-cutter, "we could discuss that later" style, which is of course the norm. Why wouldn't be, as it is mostly right? But only MOSTLY, not always.
So along with a doc having sufficient experience at seeing many guys die and many guys survive, and getting a feel for why, it is important for the doc to want to keep learning and being open to the actual science rather being trapped in the dogma of SOC. (That does not mean he still may not go the SOC route 95% of the time, but he does so because the science tells him to, not just because its the conventional wisdom or the insurance industry's preference.)
Even then, self-education and self-advocacy have to be part of the plan, to some degree. That's almost the nicest thing about starting a new treatment course that appears to be working for a while: it gives down down time from the work and worry of "what next?" and "does doctor know BEST what's next?"
You remind me that I heard there's another MO that has a reputation for liking to work with trials. If I need a second opinion or to change, s/he can be my go to 👍
I'm no doctor, but the ADT cognition issue could be helped by Ginseng supplements. Take them occasionally but I personally take them maybe 2-3 weekdays and not on weekends. I take Natures Bounty Ginseng Complex, 2 capsules at a time. (Not an advert, they are ubiquitous at least here in the US.)
First of all "stand up when you talk to him - do not sit down" Speak forcibly and look him directly in his eyes (do not look away). Tell him exactly what is bothering you (with gumption in your voice). Do Not let him double talk you...... be a man!!!.
Geez that sounds so good I might use that on my wife and maybe she'll increase my allowance......
Hahaha! Thanks for that j-o-h-n! I haven't gotten the " BE A MAN" thing since Jr High PE 😂😂.
But I'm not getting any double talk from him, or steamrolling. No reason for me to put on a spiked collar and push him into a defensive position.
I'll gladly admit that my confidence, manly or otherwise, is a bit shaken lately. But if I discover that he's "all SOC all the way" I'll almost certainly part ways eventually.
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WE NEED A NON-PROFIT ADVOCACY GROUP WITH TEETH!
Is this bruising normal?
Supplements and self-care
Hmm... AJ's Covid-19 self defense garb...
