Husband doesn’t want to continue ADT/... - Advanced Prostate...

Advanced Prostate Cancer

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Husband doesn’t want to continue ADT/treatments for stage 4. He is only 51.

Jessie5 profile image
75 Replies

Hi! My 51yo husband is stage 4. Positive for ATM gene. He had prostatectomy 12/10/19 (g7, tertiary 5 at multi focal positive margins and aggressive cancer). First PSA at 3 months was 1.44–next few PSAs DT of less than 2 months. Axumin pet showed cancer in several iliac lymph nodes, area in sacrum and small area in bladder. He had his first Lupron shot in may (PSA at that time 2.7) and completed 38 radiation treatments on 9/11/20. He is doing Lupron every 3 months for 2 years and to start again when/if PSA rises. However, after 2 lupron treatments he doesn’t want to do anymore. What are you’re thoughts?

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Jessie5
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Pleroma profile image
Pleroma

Can you tell us why he does not want to do any more Lupron. Side-effects?

Where is his PSA at right now?

Jessie5 profile image
Jessie5 in reply to Pleroma

Current PSA .04. He is starting to believe quality is more important to him than quantity. He hates every side effect of it. He hates how he feels and who he is on it. I’ve been pressuring him to do them but have come to terms that it’s his choice and only his. I told him he doesn’t have to continue the injections.

Bodysculpture profile image
Bodysculpture in reply to Jessie5

Jessie5

Dont give in so easily

Explain the facts to him re assure him you love him and want him to be here for you

It is his decision however he must be presented with ths facts and he must have an incentive to carry on

I am hoping that's you

in reply to Jessie5

At 51 he could live for decades . Although I think most of us can understand being at that point we’re he is . At 51 it’s a dam travesty for sure . He must dig deep and choose life over everything else . Men can commit suicide .. I had those dark thoughts of not being a man and total worthless ness to society . He’s must get past these . Love him Jessie5 . That’s all you can do . Not kidding about letting him chat to me ..

in reply to Jessie5

He is undetectable and could live for decades ?

Stevecavill profile image
Stevecavill in reply to

Sorry, he doesn’t have to choose life over everything else at all. If he prefers quality of life to quantity of life, then that’s a perfectly OK decision.

in reply to Stevecavill

It’s his right . CORRECT .. Nobody

“Has” to do anything ..

in reply to

I think that many of us initially at least ,I did think about throwing in the towel .. I d like this young man to not throw his life away and fight to be with his family . Who am I .? Nobody . Just a guy that went through fatalistic thinking .. I wasted two years of my shortened life sentence on bad thinking . What kind of quality of life do you think this young man will have after he stops the fight .? End stage apc ain’t no joke .

Does he exercise often? Exercise helps....alot. Lifting weights. Walking. The trick is to keep moving.

Tall_Allen profile image
Tall_Allen

Everyone has to decide for himself the terms on which he's willing to keep living. He is in charge of his life, and you have no control. I'd be mad as hell at him if I were you. You don't have to be understanding - don't deny your own feelings about it.

Hello Jessie5 , have him private chat me up . I’ll change his view. I’ve been were he is now . I was even beyond surgery and in terrible shape . This ADt works and can save his life . He can’t give in at this age . I was 53 then now 59 . Not kidding . I’ll talk to him . I’ve been there . He has you,after all and reasons to live . He will suffer ,we all do . But he must choose life . I went through terrible months of depression and suicidal ideations as well . It will get better in time or he will just adjust . I’m one that was hit hard by adt and treatments . I’m not downplaying his plight . I understand . He’s got to put some lipstick on this pig and see it through .. he must love himself . Not a easy thing to do being cut down in his prime . I got back up , so can he .. but he must want to improve .. a cancer shrink could help ,many are on mood drugs . I use only canaby ( med marijuana) products with good outcomes for me . Finding daily happiness in the storm is half of the battle . Loving self while being dwindled down to near zilch is a huge accomplishment . I think that he can push this down( with some suffering along the way) but also live many years to love you more . 🌹❤️

Lettuce231 profile image
Lettuce231 in reply to

Well done Scott, what you have said here must echo in all of us, although some suffer more than others.

We all feel like we have had the gut knocked out of us and yes we are not the same, but we are alive, we have our loved ones to continue to support and always some hope.

Jessie5 husband has such a low PSA, the next step is to rebuild his life, not give it up.

I hope that he calls you, take care brother.

Phil

in reply to Lettuce231

Hope is a precious cargo to hold on to . Without it , not much good goes. If a man gives up on himself ,only god can help him out .

in reply to Lettuce231

Lettuce231.... I was the worst . I thought that I wanted to cash it in right there . It took me two years to stop spouting suicide to my newlywed bride . This was my terrible sin against this sweet angel . I see this now and feel for his wife as well as mine.😎🌵

vforvendetta profile image
vforvendetta in reply to

You are a good man, Whimpy-p. I don't cry much, but this one did it.

in reply to vforvendetta

Thanks vforendetta! Crying is a daily habit of mine now ..I don’t often get depressed anymore . And try not to stay in the trap too long when it happens , but I cry any pain or injustice I see around me in the world . Right now, it is record setting pain in this world . Pray for the world!

in reply to vforvendetta

Me too brother . I feel for this young couple .. I worry about anyone that doesn’t cry . You’re human . Much respect ✌️

Dale150 profile image
Dale150 in reply to

Well said Whimpy-p! We all have gone through the cycles of this emotional roller coaster. On a positive note, I married my #1 supporter two weeks ago. She is my rock! Together, we will walk through this chapter in my life and I’m not planning on going anywhere anytime soon. F@%k Cancer! I hope he calls you Whimpy.

in reply to Dale150

Great congratulations my friend . I was the consummate bachelor . I met my sweet heart two years prior dx . Love at first sight . My dream girl . We got it on for two years then blamo! I’m screwed! emerged for icu with tubes amd a foley ...

We cried like babes in the woods for two weeks . Then I asked her , she said yes . What a honeymoon it was! Had been killing my self since a teen with self imposed stress .. Her love for me has kept me here this far . One wild ride ... Without her there is no me . Love each other . Love is worth it ..if you two ever are near Az drop in . We might have much in common God bless the newlyweds!🙏😂

Dale150 profile image
Dale150 in reply to

Fantastic! Good for you. Just wish i would have met my wife 35 years ago and I would have saved buying a couple of homes that I no longer own....lol. Yes Tammy and I have spent many hours crying together when I was first diagnosed. I always felt that this disease wasn’t fair to her and it isn’t, but together we will rock it and every day is a blessing. Would be cool to meet up in AZ. It was on my list of places to ride and then COVID hit. Live in Ontario so it may be awhile. Take care and give your “better half” a hug for me. Cheers!

in reply to Dale150

I felt like a complete jackass for not just ruining my life but Also hers . I met her at 51 and asked her ‘“ what took us so long” ? better late than never .if I die today I have love . That’s something I didn’t have for big portion of my life as a bachelor before . Next year come . The door is open .. everyone rides through here . Cheers to you and you’re better half 😂😂😂🤙🏽

Magnus1964 profile image
Magnus1964 in reply to

I met the Love of my life after I was diagnosed. I feel so fortunate to have found Love even I was in my 40's.

bezen profile image
bezen

I am in month 18 of the recommended 24 months of ADT (post RALP and radiation). I asked my Oncologist many times if I really had to do the full 24 months. Only advice I can give is that as I get closer to the end I'm glad I've stuck with it. Nobody enjoys this: I hate the fuzzy-headedness, fatigue, mood changes, etc. etc. I bitch and moan before each shot but before you know it another 3 months have gone by. Just had one, with just one more to go.

keepinon profile image
keepinon in reply to bezen

Hi Bezen,

I just followed you because our paths are similar. I have 7 months of Lupron +Z+P left which will total 24. My ADT side effects are barely noticeable. Good luck to you!

in reply to bezen

The penultimate ! That’ll be a good day...Hope is you can return to full t someday . After 18 months I chopped the nuts . No more shots . But if I ever dream of t again it will need to be injected . I’ve got 3 t for over 5 yrs . Welcome to zero .. 😳😂

in reply to bezen

One more ? Oh yah! GREAT JOB!

noahware profile image
noahware

How about a compromise? Since he is already into ADT, maybe commit to at least a full year, and then reconsider how to proceed. Instead of 8 shots, he goes to 4... he's halfway there!

Why go a year instead of quitting now? Well, it takes a while for those cancer cells to die. Whatever route he chooses down the road, this is going to be a marathon, and while he does not have to decide right now on how he's going to run the whole 26 miles he might as well get some real benefit from the leg he's already started.

One year is an arbitrary mark. So is 18 mo. So is 24 mo. But some consider a year, give or take, to be a minimum to get a significant impact. This is worth researching and discussing.

In AA, they say "one day at a time" but one day of ADT is not going to cut it. So perhaps say, "three months at a time."

Realize too that some of the ADT side effects are not from the loss of T but from the resulting loss of estrogen. Ask his doc(s) about adding low dose estrogen patches/gels to his treatment for potential partial relief of some side effects of ADT.

In the next few months, consider alternatives to a "Lupron for Life" mode of continuous ADT. Those might include an ADT "vacation" at 12 or 18 months, or a try at high-dose T or high-dose E, or bicalutamide monotherapy, or? Theses are not options to commit to now but to consider and research and discuss with docs.

Hi Jessie5,

I think I can understand how he feels.

He's very lucky to have you by his side.

I stopped ADT well over three years ago, after only two months due to suffering terrible side effects and poor quality of life.

If you click on my avatar you’ll be able to read my bio and some posts I started about complementary treatments.

You might also be interested in this PUB MED case report.

It's about a terminal pancreatic cancer patient who stopped his chemo due to treatment intolerance and started taking two supplements instead.

Unresectable Pancreatic Adenocarcinoma: Eight Years Later:

ncbi.nlm.nih.gov/pmc/articl...

I know that article is about pancreatic cancer and not prostate cancer,

However, if there's anything that might be able to help with pancreatic cancer (many people consider it the worst cancer of all), then it just might be worth a try.

One of the supplements that patient took was Essiac which is an old herbal remedy that's been around for almost a hundred years.

I'm the first to admit that there's no scientific evidence to show that Essiac is effective, but I've been taking it for well over 3 years and am very happy with my results so far.

Best wishes

Dave

in reply to

Amazing avoiding adt . Good for you . I like the Essiac tea ..

treedown profile image
treedown

I feel for him. I am a little older and went straight to radiation. Finished in March, I have been on ADT for a year last week. I am very active and am pretty convinced and my Dr has stated as much that I am doing well with the side effects because of how active I am. Many others on this forum will agree, exercise helps a lot. Walk, run, swim, bike just find something he loves to do and hit it hard. Of course this is if he doesn't have anything medically or physically keeping him from exercise. Best wishes on how you both choose to proceed in your individual fights with this beast. Your both better off for having each other so I hope you find common ground.

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

51 years old?..... I would hate to be in battle with you..... surrendering.... come on now you're a young stud and should be able to take the shit that us old studs are taking. Think about your poor dear wife (and family?) and fight those little M.F. bastards...Thank God you're not my younger brother or you would know what it feels like to be hurting...... Grow a pair.... damn it....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/18/2020 9:42 PM DST

ctarleton profile image
ctarleton

I think he might benefit from actually talking with some other men who have had similar procedures, and who have been on ADT themselves. A nearby group may not be meeting in person right now due to COVID-19 considerations, but some groups are meeting via Zoom or a similar method. The Facilitator(s) of some the nearby groups may also be able to connect him with men or advisors who could talk with him by phone, or the occasional one-on-one meeting from time to time.

As already mention in earlier Replies, you/he could also make similar more private contacts/arrangements here initially using the Chat tool at the top of the page.

In my experience, having the opportunity to "get a bunch of stuff off my chest" and to open up and share my feelings and emotions with someone who really "gets it", was very important during the first few years after initial diagnosis. Some men have gotten out of practice with dealing with open-ended, non-judgmental questions like, "What concerns you the most about your situation right now?" Taking those little leaps of emotional faith & vulnerability can take the edge off some of the worst of the initial fears

I've also been in Support Groups with men who really struggled with their thoughts and fears concerning their self-image as an adult male, or fears and insecurities about impending changes in their sexual bodily functions & appearance, etc. Similarly, as treatments may progress, for things like one's Roles & Capabilities in daily life as they may change during the course of their disease and any treatments.

Through all these things, Love and Hugs at home can go a long way. Those one or more "cancer buddies" can really help, too. It is one day/week/month/year at a time.

Jpl506 profile image
Jpl506

I too am 51, GS5, SBRT completed in June, 7 months into 18-24 months of ADT. Yes it’s changed my life but so did the PCa diagnosis. I’m taking the treatment 3 months at a time and doing a hell of a lot of exercising in between. Whenever I get fatigued I get up and move, in some way, to up my energy. It took me a while to realize I was eating poorly to try to combat the fatigue as well, lots of sugar and carbs. One I realized that I stopped both and started eating healthy, that helped a lot too. Finally, if all else fails, I drink black coffee. After 3-4 months of this I feel very close to my normal old self. I don’t know how I’ll feel over the next 17 months but I’m not thinking beyond making it to the next 3 month shot. Like they say, you eat an elephant one bite at a time. I think, at this point, I’ll be able to go the distance but the distance is only until December’s 3 month injection. I don’t have a silver bullet answer for you but I’m on a similar path and I’m taking it one day at a time too.

StayPositive1 profile image
StayPositive1

I’m 51, on month 26 of ADT. I don’t want to do it anymore either. I hope his PSA doesn’t rise again. But I’m sure he’ll make the no-brainer obvious decision if it does.

in reply to StayPositive1

No Man “ wants” this .. it’s a choice to avoid certain death by pc

BigM62 profile image
BigM62

I was diagnosed stage 4 at 54. Now am 57. I’m a different person. But god damn I enjoy my wife and kids too much to give up when the going isn’t THAT tough yet.

When I realized I can’t do my marathons (back stability issues from Mets), enjoy my favorite foods (I eat clean now), drink wine (why chance it?), and have a quick intense temper - it was depressing.

But now I realize that even if I don’t enjoy, I can help my WIFE enjoy. My happiness is helping with our two young kids and making her life easier. I wake up looking on how to make her day better.

Don’t let him give up without major counseling. He is at a treatment stage where his lupron side effects (although tough) may be the worst he feels for years.

It’s like cutting off a foot because of a painful ingrown toenail.

in reply to BigM62

That’s right . He’s a a critical thinking point right now . I was fucked then also . Confused and afraid too . At 53 now 59 .. he’s got to pull through the hardest part . Acceptance is crucial to survival with APC aboard us all .we can’t just fold and let it win easily . Let’s give this bastard a run for its money? Take care .

45yrsDenmark profile image
45yrsDenmark

Aww, tough one... just turned 46 myself, diagnosed Dec 1st 2019 with aggressive stage-4 PCa spread to several lymph nodes, bones and skeletal, I have since day 1 been on ADT + Zytiga plus 5 times radiation.. And not even a year has passed yet.. And yes.. the treatments sux... I also hate to be on ADT.. but in my case I was told that I would need to stay on it for life.. and yes.. I have ALL the side effects.. my entire life changed overnight..

BUT.. what keeps me going is the quality of life to see my kids grow up (now they're 5, 9 and 10).. That is my biggest motivator... And that overrules all the side effects with impotens, loss of libido, constant hot flashes, fatigue, peeing every hour each night, job situation etc etc... remember, some are sitting in a wheelchair with no legs all life... Don't know if some of these points could help to convince your husband to keep going - it's "only" 2 years.

Virtual hugs

in reply to 45yrsDenmark

Dear Denmark , you too are in the heat of the battle . I have so much love and respect for you at your youthful age fighting this beast . 5-9-10 , you’ve got much t9 do my friend . May God shelter you in healing . 🙏🏋🏽‍♂️

Doseydoe profile image
Doseydoe in reply to 45yrsDenmark

Well said, very similar to what I was thinking, 😎DD.

GP24 profile image
GP24

Your husband had prostatectomy and then salvage radiation. After salvage radiation the recommendation is to have six months of ADT, this in case of high risk:

thelancet.com/journals/lano...

Two years of ADT is recommended for radiation without previous prostatectomy only.

He can really stop with ADT and wait for the PSA value to rise. When it rises he will become worried and ask his URO for the next shot. Therefore you do not need to debate this with him. I am sure he will continue with ADT when his PSA value rises again. The current break will not make a significant difference.

NecessarilySo profile image
NecessarilySo

We are so fortunate to enjoy a beautiful planet with diverse scenery and wildlife, and compassionate beings., and the technology to experience it all. Life is a gift

But, nothing is forever.

Magnus1964 profile image
Magnus1964

I was age 42 when diagnosed and I started out like your husband, depressed, no will to do anything. I thought my life was over. Well, I'm now 74 still doing ok.

Maybe he needs to meet other cancer patients, I remembergoing to my first meeting for cancer patients met other who were 15-25 survivors leading good quality lives. It was so incredible. Well, now I am one of those long term survivors, living a good quality life. Don't give up on him.

in reply to Magnus1964

Correct. To see that he’s not alone in this bullshit

MateoBeach profile image
MateoBeach

Have him request an estradiol skin patch prescription and try it. Biweekly 4day patches in 0.10 mg/ day strength but changed out every 2nd day. This supports the effectiveness of the ADT shot and greatly alleviates the side effects. Game changer. 😁 search estradiol or PATCH on this forum for more info to take to the doctor.

Cancer Hope Network also provides discreet “matches” with similar patient/ survivors. For support not treatment. I have been a volunteer with them for 10 years.

cancerhopenetwork.org

in reply to MateoBeach

Thank you 🌵

EdBar profile image
EdBar

I second the use of estradiol patches, been on ADT for 6+ years now and been using the patch ala Snuffy Myers for almost 6 of those years. Helps a lot with hot flashes. Exercise helps too and one needs to adapt to a new normal which can still be a very good quality of life.

It’s very likely that after stopping ADT his QOL won’t be very good for long as the disease progresses so he’s only fooling himself there IMO.

I was dx at age 55, life is different but I’m grateful every day that I roll out of bed.

Ed

in reply to EdBar

Keep rollin EdBar🥳🥳🥳

Cleodman profile image
Cleodman

Yeah I hear him. Lupron sucks. I went off all treatments for 1 year and had the best year of my life but it came at the cost of a return of a positive PSA within 6 months and evidence of metastatic disease on imaging at 11 months. I may have been able to be disease free by scans for longer if I continued Lupron after my prostatectomy but who knows. I was stage 4 at my diagnosis. I did travel to 9 countries and even summited Mount Kilimanjaro in Tanzania so to me it was worth it and in the end even after going back on Lupron along with Zytiga I still became castration resistant within 12 months and now nothing works including a few clinical trials.

So...it is his choice but Lupron is the easy choice in all of this this. It does affect quality of life for sure but depending on the aggressiveness of his cancer (I am assuming Gleason 7 with very local metastatic disease to bony sacrum right?) it will go unchecked with normal testosterone and will propagate very quickly over the next couple of years. Sorry tough decision to accept as a loved one but a decision that most of us at least think about at least sometime during the course of this disease. I am 47 by the way Gleason 9 with enlarged lymph nodes everywhere and bony mets aplenty. I do enjoy every sun rise and sun set and the little things a lot more than I did before this disease. Thinking of you guys...

in reply to Cleodman

Kilimanjaro !? You’re my hero . Please post a pic for me . Dad scald it in 67 and helped set it up as a National Park .

Cleodman profile image
Cleodman in reply to

Oh wow! 67! That’s great.

in reply to Cleodman

I was six . My dad working as a member of a three man us Park planning team stir all up . My fathers greatest accomplishment . He also planned the natnl parks for Kenya Panama ,and Costa Rica .

It’s his choice to die early. Too bad in a couple of years he will miss the joy of his grandchildren. One day he might recognize that he has a disease.

in reply to

Acceptance is the most critical stage😫

in reply to

For me, it's important that if things take a turn for the worse I don't have regrets about what I could have done. I don't want to be haunted with thoughts like: "What if I had done the recommended treatments?"

in reply to

Truthfully Gregg I don’t know what I’ll do when it comes back for me ... ? I was so lucky to get out of ugly start with pc ... we know it comes back like a carnivore... I feel these years past the initial suffering are indeed gifts from god . Appreciation of the little stuff ...

Muffin2019 profile image
Muffin2019

Diagnosed at 66, now 69 and still on Lupron, side effects are kinda sometimes inconvenient but without the chemo and treatment I would not be here. I value life and not ready to cash in my chips, I still watch the diet , take the treatments, stay active, work part time and enjoy life. At 51 it is too young, think of your wife, she wants you around, FIGHT do not give up.

in reply to Muffin2019

Yes indeed. Giving up is understandable to me .. I had the same thoughts .. he can get to a better place . I’m praying he sees the light . 🙏

dadzone43 profile image
dadzone43

He is the one who has to endure the side effects. Not you. Not I. Not anyone else in this forum. He does own an obligation to explain to you as best he can WHY he has taken this position. And, yes, you are allowed to be as mad as hell at him and to tell him so. He has to own the effect of his decision on his beloved..."for better or for worse"

Horse12888 profile image
Horse12888

I agree with the others that the decision is one's own, but ameliorating the SEs may change his mind. Daily exercise, especially weight training, helps greatly.

I would look into high-dose transdermal estradiol (vs. LHRH antagonists/agonists). It's believed that the SEs are largely due to an absence of E rather than T.

Also, if he's depressed (sounds like he is), look into antidepressants. Living in misery for a short, finite period of time is one thing; a life sentence is another. I was losing my sanity to despair.

Being a patient and supportive partner through this is important. He doesn't need one more point of antagonism to exacerbate his suffering, driving his QoL further into the toilet and making him even more desperate for relief. I would think that would go without saying.

Best of luck.

jfoesq profile image
jfoesq

I was diagnosed more than 8 years ago. I had proste and lymph removal surgery. I had radiation to my largest tumor. I have been on Lupron since diagnosis and Zytiga for a majority of the time. I also had 3 "vacations" from treatment. We all have side effects of different kinds and/or to different degrees and I don't anyone who would choose to have these treatments if they didn't have metPC.

My 3 boys were 5,7 and 9 at my diagnosis. My wife works LONG hours and needed (needs) me around to help take care of them. I don't like the various side-effects. Howevwer- I, and most of us , prefer the side effects from treatment over death. For me- it's not even a close call and hard for me to believe someone would choose death instead of treatment. I wish you and him the best.

in reply to jfoesq

He is loved and needed .

Rocketman1960 profile image
Rocketman1960

Can totally relate to how your husband feels. Diagnosed at 50 with G8 PC. Been through hell and back RP, SRT, SBRT. Lupron Casidex and now Xtandi. But. At 60. I am still here. I love my family to much to not make every effort to be around for them. Yes ADT changes you but you can walk through it. Live each day as the blessing it is. Encourage him to breath deep and let him know you will always be by his side.

E2-Guy profile image
E2-Guy

Jessie,

Three years ago I became a candidate for ADT and after reading all of the negative stories regarding the nasty side effects of Lupron, I refused to subject myself to the injections. Cost was also a factor since I live in Thailand and Medicare Ins does not cover anything out of The States. Richard Wassersug suggested that I try using transdermal estradiol (tE2). I am using a gel form in place of the patches since it is readily available here at a reasonable price. I have been applying the gel for two and a half years now and my recent PSA's have been in the undetectable range with gynecomastia as the ONLY side effect. Other than looking in the mirror at a cute pair of boobs that most 12 year old girls would be envious of, I have ZERO awareness that I am on any hormone/drug. I don't consider E2 to be a drug since it is a natural occurring hormone in both women and men. I strongly suggest that your hubby consider this form of ADT.

Best, Ron

Horse12888 profile image
Horse12888 in reply to E2-Guy

Yes. As I said above, this (tE2) looks like a far superior treatment option. They say there is small risk of a heart attack or stroke. I couldn't care less.

E2-Guy profile image
E2-Guy in reply to Horse12888

I would much rather die quickly from a CV event than rot away slowly from PCa!

Horse12888 profile image
Horse12888 in reply to E2-Guy

Exactly. As I mentioned elsewhere, the depression had driven me to a point where I was **hoping** for a massive heart attack.

E2-Guy profile image
E2-Guy in reply to Horse12888

That's sad!

wagscure259 profile image
wagscure259

While I also agree that it is one’s own decision to decide their fate I would first discuss this with his medical oncologist. In my nearly 8 year battle there were times when I had enough, but- I realized how my demise would affect my wife and family and decided to ameliorate the side effects through an aggressive exercise program even on days that that was last on my want to do list. Fatigue no longer a factor. Also would point out that anti-androgen therapies can cause clinical depression as well and that may need to be addressed/treated. I know that we all don’t respond the same way to interventions so I am just reporting not recommending. Prayers lifted up

Patrick-Turner profile image
Patrick-Turner

In 2009, I was diagnosed at 62, and was extremely fit, and healthy, not much different to being 25, and sometimes rode a bicycle 150km in a day. I had Psa 6, Gleason 9, aggressive young men's type of Pca cells.

But I had so much Pca so that when docs opened me they could not do an RP.

So rather than die in a couple of years, I accepted being injected with Eiligard, ie ADT for 2 years and then had full 35 daily radiation sessions on PG 8 months after beginning ADT.

Then I waited until end of 2 years of ADT. Then Psa went back up to 8 in 6 months, fast doubling time, so I didn't want to die in 2 years so I went bac onto ADT, and have been there ever since. More IMRT plus Cosadex, then Zytiga, then chemo was tried and all that did not do much, so I have just had my 6th Lu177 shot on 2 October and Pca < 10, and I am still healthy and I cycled 234km last week at 73yo.

If a man wants to live after being diagnosed with Pca he really has to come to terms with the fact that Pca will kill a man sooner rather than later if he does not accept all treatments offered, and he needs to know he is vulnerable to what lifetime Nature allows him to live.

Then he needs to overcome all his mental resistance to treatments, and some work well, but many treatments just delay dying early, so doctors have worked out what should be done first and what should be done later as Pca progresses. ADT has fairly low side effects compared to chemo, so they try to give ADT until it fails then give chemo.

Many men hate ADT because it completely ruins their sex life, much the same way as hormone changes in women ruins their sex life as well. Then there are mind numbing effects and reduction of body strength and stamina and sporting abilities. Men don't like hot flushes - that's something old women get.

I got used to all these things as soon and as I saw my cycling speeds drop about 10%, then put up with hot flushes, then put up with bleeding from the rectum due to radiation side effects at about 18 months after EBRT.

But I was alive. I moved from cycling with fastest cyclists in town to those a bit slower, I kept working, and all the side effects did not bother me, and I knew I had to adapt without complaints and if I refused treatments I'd be dead soon, and die in terrible pain etc.

I watched a friend die before 60 last year after diagnosis at 57, married to lovely wife, 2 nice kids, and nothing that doctors did could give him more life. But docs have given me 11 years since diagnosis.

I always had poor success with finding a wife who would stay with me so by 62, it had been 34 years since I was married, and not having a wife of GF at 62 was just another thing I got used to, and it was no good me feeling bad all day about what I didn't have.

Many ppl cannot handle nor having what they have not got, and getting a cancer diagnosis certainly hurts some more than others, but in my case, at 62, I'd seen so many others dies from cancer that I wondered when my turn would come and sure enough it did, but maybe I'd handle it all better than others, without any refusals to get treated.

I like being alive.

So when I was diagnosed, I had already read many men's stories online about what happened after diagnosis. It meant End Of Sex Life. I could not have cared less about sex life because although I had the letter, there was nowhere to post it. I had no wife to disappoint by not be able to have sex. Sex with myself meant nothing. Time went by and my mind stayed alert and I worked OK and I didn't stop cycling, and did up to 12,000km a year, which kept me fitter and stronger than most men who have full normal amount of testosterone.

The cycling minimized hot flushes, and all other side effects of all other treatments, and I continue to live the life of part-time athlete who is frugal about consuming too much of everything, and who likes spending 3 hours+ working physically hard and being alone to do it, and outside and around my town on a bike, within Nature, a part of it, with all other creatures.

I was never told what drugs I could take to lessen bad side effects of ADT. Some men used Viagra, which works against ED for awhile, but after a few years of ADT, ED becomes complete, and no amount of stimulating Rodger gives any pleasure, and in fact Rodger becomes fragile, misshapen, a floppy drain pipe, and easily damaged. Therefore a man would have to use oral sex or a vibrator toy to please his wife, and this is fake sex, and often just does not work any better than oral sex.

I have seen women pack their bags and leave their man as soon as he was diagnosed with Pca. Life without sex? some ladies cannot face that. But no other drugs were suggested to me for hot flushes which hardly bothered me at all, and nothing for depression. I was not depressed. I was angry that the medical system didn't diagnose me earlier when Psa was say 3.0, or when I was about 55, and then an RP might have been possible and without all the Pca spread that happened before I was diagnosed. It was all microscopic, no spread could be seen until PsMa Ga68 scans became available in 2016, and only 2 small mets were seen, but more mets became big enough to be seen later despite the continued ADT plus other add-on drugs.

So after diagnosis with Pca, it is a time to change mentally, and deal with feelings, and not all men a very good at that, as they face getting older and losing a future dream.

But a next door neighbor got lung cancer and was dead in 18months. One sister of mine died at 60 from Ovarian ca, my dad died fast at 60 from Melanoma, and a client of mine died fast from Pancreatic ca and too young, and that's just how life really is, and all of us have to get used to the idea we cannot live forever. In my case, I soon found I had slow growing Pca, and slow growing mets. And when diagnosed, I knew all treatments rarely ever give remission, but just prolong life.

I am having a good life better than most other men my age who all have some sort of health problem. So when I compare my life to others, I am not doing to bad at all, and I have been able to live without so much other ppl demand from life. I have a life like that of a young man before he marries, with few cares or worries, and I don't need ppl to care for me, but I have a few ppl who care about me as a friend, and it is all I need.

I have been getting Lu177 from 4 Nov 2018, and so far it looks like this treatment is killing more Pca cells than all other treatments before it. But there is a limit on how much of this treatment I can have, and then something else must be tried when Pca keeps growing up again after treatments that always only work for awhile. I am lucky to be able to pay for the Lu177, it is not cheap, and not funded by Australia's Medicare. I live in Australia and all ADT and EBRT and drugs were fully covered by Medicare. Lu177 is not fully approved but is allowed to be given here if chemo fails, and it fails very often with Pca.

Lu177 was usually kept for a last treatment to be used, but as years of research went by, it was found it could be used right after diagnosis or at any time depending on a man's Pca status, and to know that is important, and best imaging for Pca is presently PsMa Ga68 scan, and perhaps with PET FDG scan added to allow the best doctors be able to best fight Pca.

I may live long enough for some other new treatment to come along. My fight is not over.

Time to get out of house and cycle a bit.....

Patrick Turner.

in reply to Patrick-Turner

Nicely written, Patrick. Fatalistic, yet hopeful, even satisfied, all at the same time.

Patrick-Turner profile image
Patrick-Turner in reply to

Thanks for summary, probably about right.

ADT didn't change me much, and many complain about it causing them to become a man they just cannot accept. I didn't put on weight and become feminized but stuck to my good diet and exercise and at 73 I have BMI 22.5, resting HR of 48 while typing to you, and have waist 89cm, and same slim figure I had at 25. The muscles have withered a bit and are not so strong and fat % has increased, but today I managed 60km on bike and I saw nobody else my age cycling anywhere. Why do they all give up when they get old?

It is possible I am a "pin up boy" at Canberra Hospital where the staff have gotten to know me well over last 10 years, all because they suspect I am healthiest stage 4 cancer patient they have seen. Getting famous this way wasn't what I ever would have chosen, but it can't last.

Apart from a bit of Pca, I am quite well.

Patrick Turner.

George71 profile image
George71

I think that is an excellent choice - high testosterone treatment is becoming the future (for some at least) after 70 years going the wrong direction with very little benefit to show for it.

Concernedwife24 profile image
Concernedwife24

Nobody wants to do the hormone shots, but what is the alternative? Got my husband on effexor and its helping

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

I keep thinking of those "young men" that were killed during the Normandy invasion. If they could only talk to us now I wonder what they would say about "quitting"....

j-o-h-n Tuesday 10/20/2020 6:54 PM DST

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