Denovo newly diagnosed what life expe... - Advanced Prostate...

Advanced Prostate Cancer

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Denovo newly diagnosed what life expectancy ?

Farn profile image
Farn
62 Replies

Hi hello you lovely people

I was diagnosed in December as de novo 1met on the sacrum and my prostate biopsy was messed up as they started the adt to early so couldn’t get the Gleason Reading

I’m low volume from ct scan and the MDT are keen to go early with docetaxal alongside the adt

I’m trying to get a gauge of life expectancy I’ve seen as short as 3 but 5 is possible or even more potentially

Can anyone enlighten me as to what is a realistic life span to expect given the best drug administration

Thank you in advance

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Farn
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62 Replies

Toss those life expectancy tables. They are outdated. Newer treatment protocols are extending life by many many years. Focus on the here and now....leave tomorrow to God.

Farn profile image
Farn in reply to

Thank you

Magnus1964 profile image
Magnus1964

ADT drugs do not change your Gleason score.

I would not guess at your life expectancy and any doctor who does is an idiot. Everyone responds differently to treatments and everyones cancer is different.

My first surgeon told me I had 5 to 10 years to live. That was 29 years ago.

Farn profile image
Farn in reply toMagnus1964

Hi I think the inference was that the adt changes the way the biopsy’s present themselves under the microscope was the way it was explained to me I may have misunderstood

Thank you for your response

Seasid profile image
Seasid in reply toFarn

I was told the same. That is why I had to wait with the beginning of my adt. It looks that it was a good decision to wait as we may delay the castration resistance this way. I still don't have any bone pain.

hansjd profile image
hansjd in reply toFarn

Yes that's what happens. The same thing happened to me. The radiation oncologist I saw offered to give me an ADT injection (Firmagon) straight away, probably because he noted the panic in our eyes at the shock diagnosis I had received just 3 days earlier. So when I had a biopsy about 3 days after the injection, they couldn't give a Gleason Score. The comment was simply, "the cells are exploding due to the Firmagon treatment and it's not possible to give a Gleason score". Frankly, it's never worried me that I didn't get one. It's now almost 4 years later and I'm (fingers crossed) still doing fine. Hope you do too.

Farn profile image
Farn in reply tohansjd

Thank you for your feedback much appreciated

dhccpa profile image
dhccpa in reply toMagnus1964

Encouraging! How old at diagnosis?

Magnus1964 profile image
Magnus1964 in reply todhccpa

I was 42. A pretty grim prognosis at that time. But no doctor should be handing out a limiting prognosis.

dhccpa profile image
dhccpa in reply toMagnus1964

That's a great success.

Farn profile image
Farn in reply todhccpa

64 thanks

dagreer profile image
dagreer in reply toMagnus1964

I was told the same 3 to 5 year thing. They all must have heard that in medical school. Plus I guess that is the best way to rush you into a treatment decision. It sure scared me.

dac500 profile image
dac500

If I were you, I wouldn't worry about life expectancy. Now a days there are so many treatment options that even the most aggressive cancer can be treated very effectively. From the information provided, your cancer may not be aggressive.

Tall_Allen profile image
Tall_Allen

Your Gleason score is unimportant now. It is only important for men with localized, non-metastatic prostate cancer.

In the UK, you can also get radiation to your prostate because you are "oligometastatic." It is done in only 6 treatments there.

ron_bucher profile image
ron_bucher in reply toTall_Allen

If Gleason is unimportant, then what is the reason for biopsy?

Tall_Allen profile image
Tall_Allen in reply toron_bucher

There is no reason to do a prostate biopsy in men who have known PCa metastases.

dhccpa profile image
dhccpa in reply toTall_Allen

I've noticed that people ask my Gleason score on forums even after I've made it clear I had bone Mets at diagnosis.

As for biopsy, I suspect that close to 100 per cent of urologists will run a biopsy if you're still in their care. Is that fairly accurate?

Tall_Allen profile image
Tall_Allen in reply todhccpa

"People" say and ask all kinds of useless things on public forums.

If you have metastases you should not be under the care of a urologist - you should be seeing a medical oncologist. If he's competent, he will not biopsy.

mustang-66 profile image
mustang-66 in reply toTall_Allen

Why not a biopsy?

Tall_Allen profile image
Tall_Allen in reply tomustang-66

No need for a prostate biopsy.

Golfnerd profile image
Golfnerd in reply toTall_Allen

One reason to get a biopsy is to send tissue it for genomic testing.

Tall_Allen profile image
Tall_Allen in reply toGolfnerd

They would biopsy a met, not the prostate.

Farn profile image
Farn

Thank you

dockam profile image
dockam

Hey Brother, don't sweat the stats, old data said a #stageivpca had a 28% chance of a 5 year survival. I'm in my 7th year now.Do chemo and ADT now, that will give you the best chances to kill as many as possible when you are younger and better able to deal with side effects.

Btw, had 15 Taxotere chemos in 2015, 6 more on a year ago, just had 4th of 6 planned Cabazitaxel sessions yesterday.

Do cardio and weight lifting to offset side effects of meds.

Go lean protein, plant based, & whole grain diet. Low animal fat. No bangers and mash or steak/kidney pie😊

Look up intermittent fasting for health and before chemo.

Fight on

in reply todockam

Mushy peas..love those mushy peas!!

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

to FGN,

I think you meant mushy pees?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/30/2022 5:05 PM EST

dockam profile image
dockam in reply to

All we are saying is give peas a chanceyoutu.be/C3_0GqPvr4U

Farn profile image
Farn in reply todockam

Thank you for your insight

Welcome Farn ! You’ll get proper answers here. How old are you ? Do you have any co morbidities? Docs can state stats .. you can do better than they say . Your attitude demeanor and lifestyle can help much if positive. Throw out bad habits . Live in the moment from here out. My uro told me 36 months max. I’ve doubled that now . No PSA or pc six yrs .. Good luck Sir!

Farn profile image
Farn in reply to

Thank you

in reply toFarn

Love yourself Farn , APC is a bitch of a man depleting disease . When I was first diagnosed at 53 ,I said to myself “ I deserve it” somehow I’ve survived? Pc for me was hereditary promoted by a self imposed stress to earn$$$$ ..

Costarica1961 profile image
Costarica1961

I was given by my uro, a year and half, I promptly got a second opinion, I was given a year by another uro , in 2017. Last I checked Im still here. I asked the same question, unfortunately.

in reply toCostarica1961

My uro also gave me a prediction . I’m Glad they were wrong ! 😂👏

E2-Guy profile image
E2-Guy

Just my unprofessional opinion, but from what I've seen/read/heard, at 64 your chances of dying from prostate cancer are slimmer than a man who is diagnosed at a much younger age. It appears that young men usually have more aggressive cases. I was 60 when Dx'd and my urologist gave me 'at least' five years...will be 79 in 2-1/2 months and still feeling great! Hope this gives you some encouragement?

Farn profile image
Farn in reply toE2-Guy

Thank you

in reply toE2-Guy

Ronron you’re amazing ! You have love . It is Key to surviving with this ..❤️❤️❤️🏋🏽‍♂️

E2-Guy profile image
E2-Guy in reply to

Thanks Bro...luv ya! Nal and I are still planning on celebrating your 80th with you!😍

in reply toE2-Guy

Ok ✅😎

Farn profile image
Farn

Thank you

Concerned-wife profile image
Concerned-wife

When you say ADT, do you mean pills like abiraterone and shots? You might want to read the Peace 1 study. Sounds like that is the treatment you are receiving. Ps it sounds like you are de novo low volume oligometastatic if you want to read other studies but Peace is the newest. And had good results with your treatment.

Farn profile image
Farn in reply toConcerned-wife

ADT is the 3 monthly injection in stomachReference Peace 1 the oncologist is not recommending the Zytiga stating that’s for high volume people so just ADT+ Docetaxal

Concerned-wife profile image
Concerned-wife in reply toFarn

Interesting. My low volume bone met husband is just on abi and the shots. Not docetaxal.

Farn profile image
Farn in reply toConcerned-wife

I think they use docetaxal as Standard of care now (SOC)

Concerned-wife profile image
Concerned-wife in reply toFarn

We had 3 opinions. Abi was what was recommended. And what many experts are saying, even after the Peace study. In any case , best of care to everyone here!

Farn profile image
Farn in reply toConcerned-wife

Thank you

Farn profile image
Farn in reply toConcerned-wife

Thank you for your response

E2-Guy profile image
E2-Guy in reply toFarn

I had BCF eight years after my RP. Using 'Oestrogel' (transdermal estradiol gel...tE2) as my only form of ADT (and taking only an 80 mg aspirn) for almost 4 years, my PSA is undetectable. My only side effect is little boobies which is a small price to pay to keep the PCa at bay. Gave up on doctors 4-1/2 years ago! Hope the next time a doctor is required is just to 'pronounce me dead'!

EdBar profile image
EdBar

I was told 3-5 back in 2014 and I’m still grinding. It is important to get a Gleason score so you know what you’re dealing with.

Ed

leo2634 profile image
leo2634

Hi Farn welcome to the club nobody wants to join. We all know that diagnosis feeling of when will I die. You are better off considering how will you live. I'm almost four years into the fight and still here. Best advice I can give you is find the best medical team and follow the instructions they give you,stay active,and most of all stay positive. Never give up Never surrender Leo

Farn profile image
Farn in reply toleo2634

Thank you for your input

MateoBeach profile image
MateoBeach

Expect to live for decades with optimal self care and the best treatments. Then live each year like it could be your last: a rich full life replete with love happiness and adventures.

in reply toMateoBeach

Drive it like you stole it! How’s the Beamer?

MateoBeach profile image
MateoBeach in reply to

Awesome. It’s out of winter storage now and seeing miles with smiles on the warmer days. Living my dream life. So glad I know you.

in reply toMateoBeach

Nuttin like taking a bike out for a spin in the country . Right up to the three sisters . I can see ya! I was a bit devastated because my bud Tom morey walked off in October ,check out oct obit in Washington post . They called him the Ben Franklin of surfing . We probably will be in San Jose with Marcia next winter Jan feb . . Happy trails compadre! Hasta Luego! 🏍🏜

MateoBeach profile image
MateoBeach in reply to

Sorry you lost your friend. Some (non-cancer fighting) friends have dropped away. Never saw it coming.

in reply toMateoBeach

🕊🕊🕊❤️

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

Predicktions....Next time ask the doc to use his dicktions and pee your time remaining in the snow...(note: spell out the numbers)...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/30/2022 5:13 PM EST

GoBucks profile image
GoBucks

I hate when I hear Docs making life predictions. How long did you think you were going to live before cancer? We don't know! Live and enjoy. My Dr gave me me 1 year to live. I told him there was no way I could pay his bill in 1 year. So he gave me 2 years. Nyuk nyuk nyuk

in reply toGoBucks

👏🏼👏🏼👏🏼😂

SpencerBoy11 profile image
SpencerBoy11

And you still can be hit by lightning or a truck.

PBnative profile image
PBnative

I had a biopsy Gleason 3+ 3 in 2009 . I did not get surgery or radiation at that time . Avodart cut my PSA from 8 to 4 . I thought I had dodged a bullet when my PSA stayed below 10 for ten years. 2 . 5 years ago I stopped Avodart for a month . My PSA started to rise and got up to 61 earlier this year when I had a PSMA PET and a bone scan both showing no visible metastases. Johns Hopkins said they would not treat me without a new biopsy. MSK , where I’m in the middle of 26 radiation treatments currently ( with Orgovyx and Zytiga with prednisone ) , said no biopsy necessary for my localized non -metastatic high risk ( due to PSA 61) PCa .

CAMPSOUPS profile image
CAMPSOUPS

I'll play devils' advocate here and speculate that why we often hear 2 to 5 years (or less than that)is because until our treatment starts it is not known how we will respond. I think many of us asked the question before our treatment started.

As we see here it can be unfair as a brother may have PCa that runs rampant and within less than a year has gone thru multiple treatments.

Others of us respond well and glide along responding well with the treatments given us.

I have thought about this before in my case and there I was in front of the Urologist and then the Oncologist with PSA 1621, mets from skull to shins.

My treatment other than Lupron had not begun. What should they have said when it wasn't even known yet how I would respond to chemo and adt.

I guess they could say we just don't know.

But being pressed they said 2 years but 5 is very possible and if you make it to 5 then making it to 10 becomes possible.

After a few of my chemo infusions and the good response I was having I made a comment in jest to my Oncologist and she smiled and said you have many,many,many years ahead of you. I think she felt better giving an optimistic outlook once we knew I was responding well to treatment.

But again we just don't know what course our individual cancer will take.

And neither do our dr.'s. We just have to stay positive. Live well everyday we are still here.

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