when is enough enough: as I read the... - Advanced Prostate...

Advanced Prostate Cancer

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when is enough enough

Thesledge profile image
48 Replies

as I read the post here I am struck by the bravery and never give up attitudes of the men who share their stories here.

I have not faced hardly any of the difficulties I read about yet I have already made up my mind that I’m going to stop treatment and enjoy what time I have left . Am I just a wiener that doesn’t want to put up a long fight. Or is my decision to stop treatment caused by the depression as a side effect of ADT. Or maybe because I am alone I don’t have the motivation for the long fight.

I guess I’m looking for some word of wisdom as to what motivates you men to fight so hard .

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Thesledge
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48 Replies
Tall_Allen profile image
Tall_Allen

Unfortunately, PCa left untreated can be a long, crippling, painful disease. Are you sure you're ready to go through that.

Thesledge profile image
Thesledge in reply to Tall_Allen

No I’m not sure I’m ready for that but I just want to try to live as best I can with whatever time I do have left. Reading the post on this forum only makes me doubt the effectiveness of any of these treatments . Let’s face it none of us gets out of this world alive.

Tall_Allen profile image
Tall_Allen in reply to Thesledge

There are no cures yet, but current therapies prolong life and can help avoid much of the pain and crippling. For many men, living without those symptoms is enough.

You get a very jaded view reading posts on a forum designed for men to complain about problems from their cancer and therapies. What about the hundreds of thousands of men who don't post here?

Thesledge profile image
Thesledge in reply to Tall_Allen

You make a good point , thank you

pd63 profile image
pd63

My dad fought pc for 14 yrs after diagnosis, he was given best care available at the time by UK NHS, hate to think what it would've been like without their help or if he'd decided not to have it.He died in 2004, things have moved on a lot since then with many improvements, so think hard and long before you decide your ending.

Hope you make the right choice.

Thesledge profile image
Thesledge

I get what you’re saying but my doctors have informed me that at the current state of my cancer a cure is not possible, only control or trying to slow the spread. I just don’t want to waste time being sick caused by the various treatments when I could instead be enjoying the life I have left knowing that the outcome will be the same either way .

I appreciate your reply . Thank you

Maxone73 profile image
Maxone73 in reply to Thesledge

control can mean many things, there are more and more guys that are dying with PCa and not because of PCa

I was diagnosed with stage 4, Gleason 10 metastatic cancer at the age of 50. I've undergone triplet therapy and have experienced minimal side effects from the chemotherapy. If given the choice to maintain my current condition for another 20 years, I would immediately agree to it. Additionally, it's important to note that research is advancing so rapidly that many practicing doctors, especially those not actively involved in research (or marginally involved), may not be fully up-to-date with the latest developments in treatments and clinical trials. So yes I would definitely sign that paper giving that I am pretty sure that within 5-10 years tops the problem won't be there anymore 😜

But I think it all comes down to how much you enjoy your life

Personally, I enjoy life and would not trade a possibility (since side effects and their amount are not guaranteed) for a certainty (the pain and misery of a short life without treatment).

BTW: adt is subjective, let's say in my experience after 8 months on adt + darolutamide, erections are not impossible (but they happen at random times!) even if libido is more limited. But Viagra can work, if that is your problem (I have read your bio). Regular exercise can keep you alive and very much kicking for many years still.

Thesledge profile image
Thesledge in reply to Maxone73

I got you and I get what you’re saying . I realize that I can very likely live 10 more years and beyond without the PCa killing me , especially if something can be done about what in my lung. Maybe it’s just the depression I’m experiencing which is certainly being increased by the ADT but I just want some of my old life back. Stupid I know because I know that is forever changed. Ii know how much worse I feel this year than last and really just want enjoy my life even if that means it is shorter. Who made the rule that you have under go continued torturous treatments to very end.?And if you don’t do that then you have not fought the good fight.

Maxone73 profile image
Maxone73 in reply to Thesledge

Nobody has the right to judge you. Everyone here will give you a different point of view but, ultimately, it's how you feel that matters. For sure ADT does not help with your mood and tends to make us over sensitive sometimes (and I am not sure it's totally a bad thing in some cases).

Thesledge profile image
Thesledge in reply to Maxone73

Thank you

Tall_Allen profile image
Tall_Allen in reply to Thesledge

You imagine you have a choice that you don't have. You only have 2 choices, I'm sorry to tell you, and neither are good:

1. Suffer the relatively mild side effects of treatments, and maybe die of something else first. You will be able to fully function independently for almost all of your time on Earth.

2. Suffer the painful and crippling side effects of your cancer and die in pain sooner of a long, lingering death, needing a lot of help.

If you think that how you feel now is how you will continue to feel, you don't understand the natural history of prostate cancer. That's why most men choose #2. I've known men who failed to imagine what #1 is like, and it wasn't pretty.

The future you imagine is already off the table.

addicted2cycling profile image
addicted2cycling in reply to Tall_Allen

Tall_Allen wrote -- "You imagine you have a choice that you don't have. You only have 2 choices, I'm sorry to tell you, and neither are good: ... "

WRONG!!!!! In my case, I WILL KILL MYSELF before the suffering begins. I HAVE a Quality of Life that I MUST MAINTAIN, or I AM DONE WITH LIFE.

Thesledge profile image
Thesledge in reply to addicted2cycling

I’m with you brother , I think most people would consider us mentally unstable for thinking this way. That is a choice open to us.

Tall_Allen profile image
Tall_Allen in reply to Thesledge

Not mentally unstable, just lacking in imagination. One of the great things about being human is the freedom to reinvent oneself. I just read Seneca: "You must construct [a sense of direction in your life] for yourself." Even Camus, an ardent existentialist, believes that Sisyphus is happy in the end.

MoonRocket profile image
MoonRocket in reply to addicted2cycling

Riding around at wee hours of the night running over piglets is no way to live. You're like a vampire. 🦇.

Tall_Allen profile image
Tall_Allen in reply to addicted2cycling

Many people find reason to live in pursuits other than feeling great all the time. The Greeks had a word for it "eudaimonia" which is the happiness a person can experience in living a fulfilled life. This may be a good time to pursue that kind of happiness.

addicted2cycling profile image
addicted2cycling in reply to Tall_Allen

A FULL LIFE for me is being able to make my wife her Sunday Morning eggs or pancakes. A FULL LIFE for me is being able to simply scratch and massage my wife's back while she lies in bed falling asleep. A FULL LIFE for me is food shopping, doing the laundry, cutting the grass, cleaning the house, BUT ALSO being able to go out at 12:52am like I did this morning for a 13.31 mile bicycle ride then relaxing with a cup of coffee and going back out at 2:27am for another ride but that time riding 16.61 miles and then again relaxing at home with some more coffee and overnight oats then going back out at 7:29am riding 51.15 miles for a total of 81.07 miles today as a soon to be 74yo with no testicles and T < 2.5ng/dL , just biopsied with a recurrence of 3 spots of 3+3 in the remaining left half of my prostate but still clear of the GL10 that was in the RIGHT HALF in 2015 and still recovering from the 2 crashes resulting after being hit by WILD HOGS while riding.

PAIN is a daily occurrence so life is not a bed of roses and feeling great.

Thesledge profile image
Thesledge in reply to addicted2cycling

Man you are awesome, honestly I’ve never posted much on here because I realized my journey has been a cake walk compared to everyone else on here.

You just brought that all into perspective. I think it time for me to shut up and man up

addicted2cycling profile image
addicted2cycling in reply to Thesledge

Thanks but NOT AWESOME just trying to Keep On - Keeping On the Best I Can. It's all I ask of myself and don't beat myself up when things get sucky. I call myself a Unique Eunuch 'cause I try to not let this crappy situation get me down.

SO many are worse off than me -- so I'm grateful to have things so easy.

Be WELL and Keep On - Keeping ON.

R1166 profile image
R1166

I really feel you Sledge, I've been in this boat for almost 5 years and share some of the feelings you described. But I do have a family (wife, 21 yo son and 12 yo daughter) so I'm doing my very best to keep going as good as I can for them. If you'll be lucky and your PSA will hit very low scores you'll be able to enjoy a break/holiday from ADT. I had already 2 and they have been wonderful....energy, good moods and feeling productive again :)) I also realised that looking at the big picture (too far ahead in life) does not help. This is a problem with no solution so it works best to tackle days one at the time.

I wish you strength and wisdom

Thesledge profile image
Thesledge in reply to R1166

Thank you so much , you get where I’m coming from and since I am alone with no spouse or children this is really a decision I can make without impacting others lives.

I’m definitely ready to try the Holiday and spoke with my doctor about it yesterday

skiingfiend profile image
skiingfiend

To be born means you eventually have to face death. Life is a gift - enjoy it while you got it because you only get one ride and then its over forever.

When physical death comes you have no choice but to accept it.

Seeking death prematurely or not trying to stave off death when you have options is a personal choice. Obviously with cancer we entered a grey zone between fully alive and approaching death (with associated deterioating physical capability) earlier than we expected and this colors your outlook and motivation.

Many people, except for those who die suddenly, eventually enter this same grey zone as they age because death is inevitable. Many people have to face declining capability, aging is a harsh mistress.

You need to find new reasons to live within yourself and put aside the regrets of what's been lost, this moment has been coming for you regardless of your cancer. It's just a part of the cycle of life.

As TA points out - don't talk yourself into an early and painful death.

Thesledge profile image
Thesledge in reply to skiingfiend

Thanks for replying , I can tell you are someone that gets what I’m saying . I will look into options but I think that enjoy the time we have is very important. Prolonging a life without quality has never made sense to me

MrG68 profile image
MrG68

Can I ask why you are considering that?.. since you've said that you have not faced hardly any of the difficulties I read about.

Some people get horrific side effects, and I can understand why these people would consider what you're saying. But it sounds to me that you've got a relatively good QOL.

Thesledge profile image
Thesledge

it’s because of the side effects of the ADT . It has completely changed how I feel emotionally and physically. As well as to complete loss of being able to control my urine flow.

Both of these things have made it impossible for me to continue working and so trying to get by on a minimal amount of Social Security has added another hurdle.

Perhaps it just my depression talking but since diagnosis none of these treatment have helped 1 bit in removythis cancer from my body. I’ve worked many yeasts as a CNA in a nursing home and have watched countless people die. I understand death and have no fear of it.

Kaliber profile image
Kaliber

ok wiener….. ur ….ah …Thesledge. I’m one of the most vocal “ he’ll no, I won’t go !!! “ guys here …. At times I’m almost what seems like a walking zombie. Leg on the floor over there , eyeball out on cheek, etc. ( figuratively speaking of course ). I’m the side effects poster boy sometimes. ( Lupron Xtandi has me in a wheelchair. ) still my personal choice is fighting like hell . I totally understand being fed up with “ all that “ …believe me.

Still, like T_A has said, when you quit the meds… you’ll have a limited period of up beat QOL then the little buggers will grow bigtime and take over and , once again, turn your life into hell …. all over again.

I absolutely realize that all of us are different and each has their own point of view , …but :

Herze a “ stay alive and thrive plan …

It sounds like you have a “ lot “ of potential good quality physical life left ( as contrasted to my folded, spindle and mutilated , abused remaining life ) . Definitely you qualify for Palliative care. Your pallitive care team will bust their buns to make you comfortable and fairly level headed , right here and right now. They will absolutely act to make you physically comfortable…. They will absolutely act to adjust your mental stability to a good place. The pallitive team sees zillions of people yearly ( often women with breast cancer, organ cancer croakers and guy like us. ) they are experts at it and it’s win win situation for you. You just have to ask and report accurately, they will act accordingly. Ok, that props up your physical. -mental side quite a bit, but you sound like you need socialization as well.

Socialization: well, this is where it gets interesting, fun even. Knock off the Oscar Meyers treatment and get going. Ask your pallitive team for “ socialization “ help. They have or know about many opportunities locally for you. Google local “ seniors night “ activities… there are weekly or monthly local senior mix and match nights where you can meet lotsa ladies. There are seniors only web groups … activities and matchmaking sites. Get with it and get busy buster. Hereze a little secret that lots of croakers don’t know , but us croakers have a “ magic “ magnet for attracting the ladies. Even “ me “ , grossly obese and ( esp ) in a wheelchair …. When I’m out on my etrike , alone, at local shopping centers , I get “ hit on “ regularly by the ladies ( usually in the supermarkets and large drug stores ) Part of it is the Florence nightingale left in them and part is the prospect of getting away from their families back into their own home again. That plus the practical aspect of “ the estate “ if, heaven forbid, something happens and they are your lady and / or married. ( this works equally well no matter what your partner gender preferences are ) . Not being in a wheelchair makes it harder for you to convey “ the information “, but social gatherings and social senior sites, where your stage 4 croaker info is available in your bio. Fill the bill.

In larger metros, the available senior ladies amounts are large, opportunities will abound. For just “ casual “ socialization, many local rest homes / extended care facilities often welcome in well dressed senior men for their daily socializing hours. ( you are a potential client later on, and you’ll keep the ladies busy fawning over you ). Hate to say it, but you can become toooo attractive to a very small bit of the population, unusually young ladies and overly aggressive any lady are caution flags. Back ground checks only cost $300-$400 and worth every penny if things are getting serious.

Since you are “ looking for words of wisdom that motivates you “ …. This is a “ serious “ attempt to point out that you are “ still the captain of your ship “ … steer that puppy out into the current and let the fair winds ( the ladies ) propel you forward into the sunset.

Love ya brother,

❤️❤️❤️

Thesledge profile image
Thesledge in reply to Kaliber

Thanks man , you certainly gave me a new perspective, I truely admire you attitude. I can tell you’re a fun guy in-spite of everything . Being a gay man unfortunately it’s somewhat more difficult. You are right I could really use some socialization. Unfortunately and it’s certainly nothing that gays should be proud of , there is really no one who would be considered more useless than a “gay top” that can not perform sexually. And as I’m sure you know that’s where I’m at, but I suppose that’s a topic better discussed in another forum.

Thanks alot though your positivity made my day.

Kaliber profile image
Kaliber in reply to Thesledge

I dunno where you are located but here in Fresno the gay community is very strong and well established. There would be “ lots “ of opportunities here and I’m told that local gay web communities are very prolific. My gay friend of decades ( I’ll call him L ) has been very influential in my ( limited , barely in depth ) understanding of the male gay community. Having said that, I’d say that gay people are no different than hetros in a lot / most respects. We all need love and caring , if anything …. the gay guys I know are VERY social , more so than the plain ole boring hetros that I know. ( most of us ??? )

I might be off base here, and please excuse my bumbling , but I’d guess being gay is a big bonus in some respects. Absolutely, for sure, your pallitive care team is very experienced helping out gay patients. Just tell them, initially, and it’ll be good after that.

My friend L comes in from out of town , now and then, and he seems to find a “ friend “ - friends very easily.

You are still good to go , I doubt gay is much of a hindrance… maybe a bonus. It definitely would be here in town. Don’t try to backslide buddy, get on in there and get going.

THIS is very important: you are not going to “ get better “ months and years from now. Your good - best months / years are parading before your eyes…. Now. Times a wasting , putting it off may put you in a place where you have lost your best remaining time and you are ( like me ) reduced trying to wring blood out of the proverbial turnip. I wish to &$#@ I had heard this advice and followed it several years ago before I ended up in this dang wheelchair. Doing things are ever so much more difficult now ( not stopping me though ) I wish I had acted much more earlier when it would have been dramatically easier.

Just say’in

❤️❤️❤️

Thesledge profile image
Thesledge in reply to Kaliber

I agree, I usually live in Montana but came down to Arizona for a few months to get out of the cold. I live alone 50 miles from the nearest town which is no town at all. And of course Montana is certainly not a gay meca.

You are spot on about time slipping away and I should do what I can now Thanks and take care

Kaliber profile image
Kaliber in reply to Thesledge

love ya brother

❤️❤️❤️

Chemtrails-USA profile image
Chemtrails-USA in reply to Kaliber

Epic reply by “”Excalibur”.

“Forged when the world was young, and bird and beast and flower were one with man, and death was but a dream!” (King Arthur)

Kaliber profile image
Kaliber in reply to Chemtrails-USA

Lol brother …. Bless our messes .

❤️❤️❤️

Mike1971 profile image
Mike1971

Thesledge,

I, like so many others here, understand and get what you are feeling. One thing I would like to mention, even though you already seem to know this, is that yes, ADT often creates depression. And while depressed you don’t see the great things in life. They are there, you just don’t see them. So if you haven’t already, please give yourself a chance by getting help to see things in a more sober light, be it therapy, antidepressants or something else.

There are many reasons for you to keep fighting and to enjoy life. You may just not feel or understand it right now. Please give yourself a chance.

Thesledge profile image
Thesledge in reply to Mike1971

Thank you Mike for your heartfelt answer. Yes I am aware of the depression. I’ve been on medication for years with what I’d call less than ideal results. Perhaps it is time to revisit that and see if another medicine would work better. Of course that just means another visit to another healthcare provider. Yuuuk

Proflac profile image
Proflac in reply to Thesledge

Hi. I was thinking the same thing as Mike1971. Low mood and sometimes deep depression are all too common whether from a cancer diagnosis and/or from the ADT meds. Before you take the road that as TA argued might not be good or even bearable for any length of time perhaps consider swapping your antidepressants and getting some therapy to help with mood. Must be worth a try? You might find you see the here and now and the future in a different light. If not,you've not lost much in trying? Best wishes.

Thesledge profile image
Thesledge in reply to Proflac

Thanks and yes I have already decided that seeing if a change of antidepressant medication may help .

Honestly I really hate going to Doctors always have even before Cancer. All the poking and prodding , diagnostic test even taking medication has never been a thing that I could embrace.

garyjp9 profile image
garyjp9 in reply to Thesledge

I would like to add my support to this course of action. Like you, I have no partner or children, and like you, I am so tired of seeing diifferent docs for the cancer and other issues affecting me that I often feel like saying "F**k it all." Also like you, I have been on anti-depressants off and on for years, but I could sense I needed more help after the Stage IV diagnosis. Definitely think about changing up the meds and maybe talking with someone. Even if you live in a remote area, there is now counseling available over zoom at a relatively reasonable cost (e.g. medicalnewstoday.com/articl... ).

Thesledge profile image
Thesledge in reply to garyjp9

Thanks Gary it nice to read reply from someone that so closely mirrors my situation and attitude . I’m definitely gonna see if my antidepressants can he changed , even though I’ve never gotten a whole lot of relief with them even before Cancer.

garyjp9 profile image
garyjp9 in reply to Thesledge

I'm responding with a private message

gsun profile image
gsun

Do some things that you wouldn’t normally do. Ride a motorcycle fast. Ski a double black run. Skydive. Bungee jump. Or maybe you did all this before. It will make your life worthwhile.

Or if not possible, hike up a mountain and look out. Swim in the ocean or a lake. Camp out. There are a lot of enjoyable things left to do

Thesledge profile image
Thesledge in reply to gsun

Thanks a lot for your suggestion, I haven’t done most of those thing. I know I need to find that “spark” again.

gsun profile image
gsun

Hope you find it. Read my edit

Thesledge profile image
Thesledge in reply to gsun

Yes the activities in the edit are things I do enjoy , I just need to do more of it

j-o-h-n profile image
j-o-h-n

First of all ask your doc about Keytruda for your Lung issue. It worked for me.

Next why not adopt me........... I can be your 87 year old adopted funny son.

Next If you decide to off yourself, make me your Full beneficiary first.

Get yourself a good hobby......I collect doorknobs.

Crash parties and tell everyone who challenges you that you're the invisible comedian.

Now for an argument/discussion: No one cares what I think but I dislike the term "a gay person" which really is a homosexual. Most of the homosexuals (my brother included) were anything but "gay" (Mood worse than a first Sargent on a Monday morning) . So if you need to get your blood circulating then re-read what I just posted and leave it at that... cause I don't give a shit what you think.......I am the old Normal.....

Last note: If you really want to enjoy yourself get out of fucking Montana and move to a big city like fucking L.A. or fucking S.F.

Good Luck, Good Health and Good Humor.

j-o-h-n

Thesledge profile image
Thesledge in reply to j-o-h-n

I give you credit John you are a very funny guy, sure glad you have kept your sense of humor. I’d be glad to make you my beneficiary but I’m afraid all I’d have to leave you would be bills. Thanks for making me laugh today

ARIES29 profile image
ARIES29

Some very good points made here but really living alone & isolating yourself like that is your bigest problem as I see it. ADT is depression ramped up, without having to live your life alone.

Go live your life while you can!

Thesledge profile image
Thesledge in reply to ARIES29

Thanks ARIES believe me I know what you’re saying unfortunately right now I am really isolated, hell I have to drive 50 miles just to go to the grocery store. Opportunities to socialize are rare but come the middle of May I will head back up to Montana where I’ll at least be living in a town . I do enjoy being down here in Arizona during the winter tho because it’s so cold up north .

Living my life while I can is definitely what I have in mind .

ARIES29 profile image
ARIES29

Good on you for having a positive attitude. I lived alone isolated like that, 85k from nearest town & just wanted to be away from humanity & depression really set in. I always believed I could just end it as my step father did but when faced with the reality of it no way, or maybe I was just a coward? Anyway I jumped on a plane & met my new wife & we now have 11yo daughter & life could not be better. Cancer? For me at 75 is just how it is. We aint going to live forever! Montana sounds nice.

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