When patients didn’t have access to the internet & you were fed just what you needed to know regarding treatments. Not telling you about the pain that you might have to endure until it arrives.
Not giving you an idea of time you have left until near the end was that a better approach ?
Knowledge is Power
or
Ignorance is Bliss
Pretty sure I know what most guys on here will pick
🤫😎
Yeah, why should we bother screening men for prostate cancer? It will only upset them. *sarcasm*
Sorry if I’ve caused offence I’m stage 4 advanced with a bone metastasis I'm definitely in the right placeI relate to the fact that before I knew I had Prostate cancer I wasn’t worried about it which is obvious of course unless you already had suspicions.
From that day forward I have researched for several hours most days.Why? because I was told that the treatment plan would be a patient / oncologist driven.
How am I supposed to know what is the best way forward ?
So to do
Myself justice I went on a fastrack educational self learning course
You tube definitely Mark Shwarz Dr Kwon Etc
My question is really aimed at Is it better knowing what lies ahead from the outset shouldn’t it be the MDT telling me what will give me the best outcome?
Or am I better off knowing all of what lies ahead through the self education process
Would you enjoy a better QOL during the early part of the diagnosis more if you only found out how the progression was impacting on you at that time in that part of the cancer progression,
It’s a question really about are we better off having so much information or less so?
If this posting causes offence let me know and I’ll remove it
In answer to another question
In England we have the NHS that allows us certain medications but in England you have access to less approved treatments than men in Scotland say.
The NHS was designed to give access to medicines on what you would think would be on an across the country approach so I do think the system is unfair but that wasn’t my question
I’m very grateful to the group of people on here so again apologies for any offence
You did not cause any offense. You are welcome express yourself and your thoughts freely without defending yourself.
For many patients doctors are still gods… when in reality they just human beings that you hired as professionals. They can be excellent, good, average or bad like any other professionals. The difference is your life is at stake this time and you should be ruthless in firing and hiring these professionals without any guilt.
Most people in this forum prefer knowledge to ignorance.
To really be able to decide what is the best for you, it is necessary to become your own doctor and all other MDs, ROs, MOs have to become your assistant and consultants… and knowledge is the key here … and of cause some good luck should help.
When it is time to make a decision, one should make a decision based on the information available to him at the time and then own this decision without blaming anyone and not regretting it.
Some will prefer blindly follow doctor advice and then often blame this doctor and wondering what could have been and complain and regret.
Many others will never question doctor and be in peace with whatever the outcome, is it ignorance - yes, but if person is in peace with his choices - that is all that matters at the end.
Others actively participate in their treatments approach.
Which way is the best?
I think the best way is the one that keeps you in peace with your decisions no matter the outcome.
No offence at all. It’s good to express how you feel and I would be surprised if anybody with advanced prostate cancer had never felt frustrated at whatever system they are in as there is so much uncertainty with this one.
Good luck with your treatment.
No offense. Sorry you had to spell it out so completely for me to understand you lol.
A fair question. I like to know more, and not just what SOC is (although SOC is very important knowledge).
I had both opinions for many years but now I Want To KNOW!After The first urologist I progressed to an MO who drew on a blackboard a curvy line with the word D at the end & he said you are here, not far from the end. I can not explain the mental effect that had on me. I was dumbfounded! I am going to die!
After a long brain dead time I found another MO & we understand each other fine.
Ignorance really is bliss! So enjoy it while you can but remember the reality check in time to adjust & research before the D at the end.
There aint no coming back & I remember what Sir Frank Packer said after he clinically died & was bought back. THERE IS NOTHING ON THE OTHER SIDE.
Take Care You All.
As Dr. Bernie Siegal has said, "If a doctor tells you how much time you have left, walk out and find another doctor". I've done all the research and do 99% of the talking with the doctor. Les, my husband, didn't want to know the gory details and said he'd ask me if he wanted to know. It works for us. We don't discuss cancer and I dread the psa tests and the 6 month trip to the doctor and the Lupron shot. That's when cancer comes back into our lives. At this point, each doctor Les has had understands our situation. Les trusts me and the doctors also trust me to give them the history when we first meet. Les has buried one doctor and had 2 go into retirement. His present doctor is wonderful and is just so thrilled to see Les doing so well. We've stayed the course with Lupron. For the longest, his platelets were suppressed but were in the normal range with this last test. His blood sugar is now elevated, another gift from Lupron. I think it's individual for each couple as to how they deal with it. Whatever works for you!
Sounds as though you and your husband have the perfect solution Long may it continue
Like I said, it's an individual coping mechanism. I felt like, "Why have 2 people depressed?" So, I handle it with a ton of research. Les just lives as normal a life as possible. I wish you all the best on this journey. Aloha.
No one has a crystal ball to tell you how much time you have left. Stay in the present moment - conjectures about imaginary futures are just an exercise is causing your own suffering.
Farn, you ask a good question. Of course, most of us prefer knowledge to ignorance (use of that pejorative term kind of shows our hand, doesn't it?), or we wouldn't be here. But in our quest for this knowledge, do we sometimes get so preoccupied with analyzing things past and anticipating our future that we compromise our ability to enjoy the present? I'm not sure if I've found the right balance here.
Besides this blog, it’s a curse, you can’t believe half the stuff most posts and less about social issues. Trouble is I’m hooked 🤪🤪
Two years in having good results from treatments, orchiectomy, one week of target radiation, Zytiga and prednisone, and medical marijuana AND I know not everyone has good results with similar treatments. I think, since each person is different and responds differently to various treatments our only choice is to know as much as we can so we can so that we make informed choices. For example, even with good results I continue to learn in preparation for changes in these good results. I would be uncomfortable “not knowing”
Several decades ago, I would think "being ignorant" of your already-advanced metastatic PC was probably a blessing, because there was little to be done in the way of extending life that wasn't purely palliative. In other words, the way you found out was to experience painful mets, and treating pain at that point brought both relief and a stay of execution... knowing about those mets before they became painful might cause you anxiety, but undergoing castration sooner rather than later in those days was not likely to buy you extra years (let alone a durable remission or any full pardon from your death sentence).
But today I don't see a benefit to remaining ignorant, because there are so many treatments that can and do extend life, as well as relieve pain. And the usefulness of any doctor's predictions of how long a given man will live and how well he will respond to a treatment (or not) is unknown: some men die right on time, some way too early, and some get a really long reprieve. (Docs can mostly base general statistical predictions on "median survival" times, and we know from survival curves that half of men die BEFORE that point and the other half die AFTER that point!)
A good example of why to stay informed is the VISION trial for Lu177. Men in the control arm were NOT given the best care, and many dropped out. I assume the earliest to do so were the ones best informed about other options. Here is a scathing review by Vinay Prasad:
youtube.com/watch?v=pAsPzPt...
Can you interpret this for me is he saying that the randomised trial is a fiasco or that the treatment itself is non effective or both.Thank you
The Lu177 treatment in the experimental arm is fine and (usually) effective, and state-of-the art. [I will be starting it myself in a few weeks!] He is simply saying the trial was poorly conducted, to the possible detriment of some of the men in the control arm, those NOT receiving the Lu177.
I am pointing out that this is a good example of why just"following orders" in ignorance may not be a good idea, as men in the control arm who were aware that further chemo (not allowed in the trial) could extend their lives. Some of these un-ignorant men dropped out of the trial and pursued superior treatment to that being offered to those in the control arm.
My dad found out late in his 70s. No surgery, straight to hormone therapy. My brother found out early in his 50s. Did the prostatectomy and radiation. I’ve seen both sides of the coin.Some people just can’t deal with it being cancer and want it eradicated ASAP. My dad was living in ignorance but was happy until he found out, then it all fell apart.
My opinion is I would say it depends on the individual. Personally, I’ve seen both cases what you are talking about intimately, I would say you should really want to know early. It allows you make a more informed decision of how you deal with it. You need to educate yourself as much as possible which should remove any fears from this disease. But that’s just me maybe.
Personally, I also appreciate a little advance notice in coming to to terms with my mortality. Yes, there is some anxiety in getting what amount to a death sentence when you are stage 4 at diagnosis, but there is also an opportunity to attempt to live each day more fully and to have gratitude for how lucky you are to have made it this far (whether 40s, 50s, 60s or 70s). Many are not so lucky, whether taken by disease or drugs or suicide or crime or accident or disaster or war.
The one blessing of most PC relative to other cancers is that it moves a bit more slowly, and pain can often be fully addressed for months or even years. We can use that as the potential gift that it is, or squander it.
Tantric philosophy of Kashmir Shaivism 1200 years ago in the Shiva Sutras declared that ignorance (ajnana) is the opposite of bliss (ananda):Sutra 1. Caitanya atma. Consciousness is the Self.
Sutra 2. jnanam bandah. Ignorance is bondage.
WANTED: Opines on what you think is, or is not, a time to worry about PSA increase
J Stent: How long can men keep using stent if TURP is contraindicated? Stage 4 man with mets.
What is your current PSA?
Is this normal?
