Better had never known

With surgery date 3 weeks out I can't help but feel that it would have been better to never have known I had this. Know it sounds odd given that they believe it's still contained with one Gleason 8. But I just think I would have been happier not knowing and letting things go they way they were going to go.

Ron42661 said...
With surgery date 3 weeks out I can't help but feel that it would have been better to never have known I had this. Know it sounds odd given that they believe it's still contained with one Gleason 8. But I just think I would have been happier not knowing and letting things go they way they were going to go.

Are you having any misgivings about your choice in treatment? With 1 G8, if you had never known, it could have ended up bad later own, but who knows it might be way later on. Plus, just because they only found 1 core of G8 does not mean there is not some more stuff in there. If you are not sure of your treatment, there is still time to make another choice. Not that I am trying to talk you out of your choice, not at all. But I will say you really need to be certain. And you are not sounding real certain, what with " I just think I would have been happier not knowing and letting things go they way they were going to go".

I'm not sure that never having known would have worked out in your favor better than some form of treatment. But then I obviously don't know. God bless you, Brother!

Dear Ron,
My father is suffering from gleason 9 (more aggressive than gleason 8) bone metastatic and we are fighting for the disease since 3 years. Dont loose hope and be strong. your loved ones need you and you should do treatment well.

With Good Wishes

Jannet

Ron, all due respect and I understand the feelings you're having, but 'never knowing' would have likely ended miserably for you. I don't think you would've wanted your family to endure that. A G8 is serious business. If you're re-thinking your treatment options that's certainly understandable, but if you're thinking of blowing any treatment off, that's not a good idea. It's a _good_ thing that it was found. Heck, if not for a routine PSA test during a routine blood draw by my primary care doc a couple of weeks after I turned 50, I never would've known myself!

My stepfather was a G8 with adverse pathology after surgery (NOT a top surgeon!). He fought the beast for 6 years, and even being the tough, salty, old US Navy bird that he was, he died miserably (bone metastasis) with my mom praying for God to take him at the very end. I wouldn't wish that on anyone.

It's difficult to digest now, but after surgery and especially after catheter removal, you'll feel better. Frankly, my rotator cuff surgery recovery was worse.

Hang in there,

MD

With sincere due respect. My feeling is before this chance discovery I had no idea that I have cancer. I would still be doing my every day routine without wondering what is to come and then looking over my shoulder afterwards for the time it raises its head again or finding that things weren't as promising as we thought. Things would go as they always had until one of the symptoms showed up and the time could possibly be short until the inevitable I'm sure I may feel different afterwards. And from all indications surgery is best option for me but right now it is hard to believe that this will ever be put behind me. Sorry this is still new to me

This disease, cancer in general, is hard to handle emotionally. It's unpredictable, we don't know when we would have become aware of it, what it would have done untreated, what the truly best treatment is, what side effects we'd have with a different treatment choice, and on, and on. And after treatment, while dealing with those side effects, there will always be the risk of recurrence lurking in the background. Always. From nearly zero, fuggedaboudit, to virtually certain.

Given all of that, is it better to know, or not? There can never be a sure answer to that. We can empathize with your angst, your stress. You're bringing up the whole issue of whether or not screening is a good idea, overdiagnosis, and so on. That's been argued both ways for a long time, and tends to become a lively and contentious thread once it begins. There's no simple answer.

A doctor has been widely quoted saying:
The distinguished urologist Willet Whitmore recognized overdiagnosis as a problem in his famous quote, “The quandary in prostate cancer: Is cure necessary in those for whom it is possible, and is cure possible in those for whom it is necessary?”

This discussion made me think about, of all things, Alfred Hitchcock's discussion about how he created suspense in his movies. The example he gave was of a couple sitting in a restaurant, with a bomb under the table. If they're dining and the bomb just goes off, as a story-telling device it's weak, as it's a merely a sudden shock and over very quickly for the audience. But, as he preferred, you show the audience the restaurant, couple, then the bomb. Then the timer. The couple ordering, the timer counting down, the couple dining, the timer... and so on. The audience is on the edge of their seats, tense, in suspense, practically yelling at the screen "Get out!".

The cancer screening process is like being shown the bomb long before it goes off. We get some vague idea of the size of it (severity), and the timer (anyone's guess), and then live in suspense. Do we try to disarm it (treat it)? Do we just live with it until it goes off? How do you live life carefree knowing it's there, even if it's small with a long timer?

I dunno, it's just an interesting (to me) metaphor that came to mind.

Coincidently 56 as well and in great health too in fact have lost 50 pounds in last year which makes this almost more unbelievable. The wet noodle thing for better or worse is not an issue as haven't had sex for fifteen years and little chance of it going forward without treatment I had 12 cores 9 benign and one Gleason 6 one 7 and the aggressive 8. If treating I know surgery us best option but the anxiety building up and the unknown has it spread (right now all scans are negative) and wondering will it return for the rest of my days makes me wander down this path. Just venting just scared just so didn't want this. But then who did??? Thanks to all for your time in allowing me a sounding board

Ron42661 said...
With sincere due respect. My feeling is before this chance discovery I had no idea that I have cancer. I would still be doing my every day routine without wondering what is to come and then looking over my shoulder afterwards for the time it raises its head again or finding that things weren't as promising as we thought. Things would go as they always had until one of the symptoms showed up and the time could possibly be short until the inevitable I'm sure I may feel different afterwards. And from all indications surgery is best option for me but right now it is hard to believe that this will ever be put behind me. Sorry this is still new to me

That is true, before discovery you had no idea about the problem you had, and now you know. And it is true that- depending probably on your personality type- even after treatment you might worry about this the rest of your life, or as you say "looking over your shoulder".

But would you really prefer, as opposed to being quite possibly cured, making the discovery a few years down the road when painful symptoms show up, also when it is quite possibly too late to do anything to stave off painful death? Sure, you might get a few happy go lucky years before that happens, or maybe quite a few- or maybe not many. I have a friend from HS who died in his early 60s from PC. I'm betting he also didn't know until it was too late. If so, I don't see the advantage to him or his loved ones of dying from PCa vs being cured of it(or at the least almost certain many years of remission/control). Being cured and then having to deal with the fact he had that cancer and it might even come back requiring more treatment, and all of that being on his mind, vs a painful death in his early 60s. Really? Even if he was even more unlucky and had to deal with some bad side effects of treatment, is choosing painful death- possibly at an early age- really a rational choice?

I completely understand the negative emotions that go with this disease an even with treatment for this disease, even negative emotions after treatment that hopefully is successful. I have had my share of all of those negtive vibes. And I can see having some serious concerns about which treatment or possible SEs to choose- and whether or not to have any treatment in the case of low risk guys. But you have been given a gift. The odds say that you are able to choose to completely avoid painful, and maybe early also- death. Assuming high quality treatment, the odds of you NOT dying from this disease at an early age, or really at any age, are solidly in your favor. But only because you know, in time, and are able to choose treatment. That is a gift IMO. Take advantage of it! I understand the fear and anxiety, but screw it: punch this PCa in the nose and then kick it in the balls, take advantage of the gift you have been given. Celebrate not finding out AFTER the odds of dying from it are quite high. Instead, you get to die from something else, most likely! And if you are lucky, you get to die from something else many relatively happy years down the road!

It is natural to feel what you're feeling. Getting a cancer diagnosis when you otherwise feel fine would be a shock to anyone. Plus, there's no way to prepare yourself. It's all a big surprise; the diagnosis, and your reaction.

I didn't experience what you are, but I can assure you I wondered how I could have cancer while I was thinking how healthy I was. I guess cancer can sneak up on you.

I'd urge you to join a prostate cancer support group in your area. You'll meet people like yourself at different points on their journey. Talking and listening should help you gain perspective.

My wife currently teaches meditation. You might want to consider that as well.

My hope is you will treat this disease in the best way for you, and then go forward and live a long, productive life.

Hey Ron,
My husband and I have both had the same fleeting thought. He's a Gleason 9 and went the radiation route, and while he's tolerated it well, the hormone therapy is really nasty. He was asymptomatic and has several times openly wondered if he'd have been better off enjoying life until the disease showed symptoms and then just took its course (because things seemed so fine before, and right now they are NOT FINE).

But those thoughts are fleeting. At this point, it's worth it to us to aim for a cure. I just wanted to let you know that I get what you're saying. I feel like January 2017 was our last normal month, and it'll be a while before we ever get another one. And that just sucks all around.

Stay with us on here. We help each other when we these moments come up (and they do). You have a good shot at a cure, knowing about the cancer earlier means you get to take that shot.

Ron

I know some of the what if feelings. I received the results call at 11:00 am on Friday before labor day ten years ago. Did not know anything about pc. Dr. wanted me and my wife to come visit as the patient of the day on Tuesday. Oh no, Friday night, Saturday, Sunday, Monday, Tuesday what is he going to tell us. 57 years old, great life, had heart bypass surgery 15 years before- age 42,. Talked with friends, and most ignorant "caring" people greeted the news with:"Oh that's the best kind of cancer to have!" I wanted to respond, ok you can have my share of this good thing. Well my family surrounded and prayed for me, my wife said we will get through this. I was better by Sunday with the what if's. I called two friends and got there knowledge- they went to my same doctor. My wife got on the internet and found one of the best pc doctor's in the country. We went to the Tuesday afternoon meeting. Heard that surgery would do the trick. Wednesday we called the other doctor, he could see us Friday morning. He was transitioning for academia to private/research practice. Met him in a shared basement office space in downtown Houston. The building was where I had gone 55 years earlier as child. Not impressive at all. His staff greeted us, did preliminary exam, drew blood, the Dr. popped the glove on and did the deed. We talked with him immediately- he was ready for lunch. He was very confident and reassuring about his skills and the probable outcome. Well, the road has had some bumps in the last ten years- however changing doctors, IMO has saved my life. He was and continues to be a top flight PC specialists. His new digs are first class. He has given me exceptional care. I am grateful for my wife's love and research and his ability. You just do what you have to do. Hopefully your treatment plan will be effective and you will have many years of non-eventful life. Unless I missed something, you really do have to go down some path at this point. GS8 is a dog that will bite- you want to kick it in the teeth every time it even thinks about growling at you.

I think you have received excellent advice to use these weeks before your scheduled surgery to explore all your other treatment options and most of all to be comfortable with your treatment choice before you pull the trigger

What prompts my reply is the oft repeated statement that should one not have treatment they are dooming themselves to a horrible, terrible death from PCa....my response is maybe....

Statistically 10 and 15 year survival for even the most grim of PCa cases show that something other than the cancer is likely to kill you and even a significant number of men who opt for no treatment will survive. Of course PCa is an individual disease and only the man being treated can determine what is an acceptable risk for his particular case.

As to the issue of a horrible death...

My father in law was an lifelong athlete, in 2005 at age 85 he was as strong and vigorous as he had been at 35, spending ten to fifteen hours weekly at the gym and fitting in a round or two of golf a week in addition being the patriarch and mentor to his six daughters and their families. Quite unexpectedly he collapsed one day during a game of handball and was rushed to the hospital. Testing showed he was suffering from severe anemia had a PSA of 16,000, extensive bone mets and organ involvement. He immediately chose to be admitted into a Hospice program and passed peacefully a few months later without having any significant pain that could not be controlled by the hospice staff.

Last summer one of my sister in laws husband was diagnosed with Gleason 9-10 at the age of 59. He chose to "throw everything but the kitchen sink at it" radiation, HT, chemo. Two months into the treatment program he picked up a drug resistant pneumonia and passed within a matter of days.

In 2010 based on my PSA I advised my 53yo brother to have his PSA checked. He scheduled an appointment but was killed in a car wreck before he could make it.

The point of these stories is to illustrate that the only predictable thing in life is its unpredictability and that is especially true of a PCa diagnosis.

Ron, take a little time, focus on your entire life situation not just the part of it that includes a PCa diagnosis, and most importantly come to the best decision for you...

Hi Ron,
Before you opt for non treatment please read my thread about my husband's end of life journey thread. If you cancel surgery toexplore other treatment options, that could be helpful in alleviating your anxieties about treatment. But if you don't treat and if that aggressive G8 turns into mets to bones and lymph nodes, at your age, it will be an unpleasant turn of events with no option for complete cure and a long haul with palliative treatment or painful demise. Our MO said younger men's PCa is often more aggressive. Don't know if that's proven fact.
For most dying from PCa is a worse alternative to having to deal with the anxiety and SE's of the potential cure. It's your decision, but you should make it with your eyes wide open.
Best wishes to you in whatever path you choose.
Beth