Cure definition : Hello all, Apologies... - Advanced Prostate...

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Cure definition

SC19 profile image
SC19
58 Replies

Hello all,

Apologies for what might be a silly question but I am confused as to the meaning of getting to a very low or undetectable PSA. If a man is considered cured after getting to an undetectable PSA after treatment for a stage 1/2 prostate cancer, why is getting to an undetectable PSA after treatment for a stage 4 prostate cancer thought of as incurable?

Thank you for all the invaluable information on this forum.

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SC19 profile image
SC19
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58 Replies
Tall_Allen profile image
Tall_Allen

"Cure" is a term patients can use (I do). Doctors can only report "no evidence of disease."

When the cancer is localized, it is potentially curable - you can wipe out all the cancer there is with local treatment. After the cancer has metastasized, it is systemic - you can't wipe out all the cancer there is - there are thousands of cells in the blood, lymph, bone, and other tissue reservoirs that may be too small to see or may not create enough serum PSA to be detectable.

PSA is just a biomarker. One can have undetectable PSA and still have prostate cancer.

westof profile image
westof in reply to Tall_Allen

Hmm... Hey T_A, perfect timing for this post. Thanks, SC19!

Today, I met with my MSK docs (MO and RO) and was stunned. Let me explain:

1) MO indicated that 1st line therapy ( lupron, Zytiga and prednisone) has caused anemia and wants to see me in 2 months. I get a monthly blood draw (CBC, CMP, PSA and testosterone.) I've studied the effects of the meds and I get it.

2) Now, my RO (he did my HDR Brachy and 25 days of IMRT) spoke with me and did a very brief DRE ( didn't go all the way, I guess just a post IMRT look around).

At the end of the consult, I asked what my prognosis was going forward.

He looked at me and without batting an eye, said "your cured"!

My dx was 8/19: G9,T3,high PSA 28 and no mets. Age 71.

I'm elated, but stunned with disbelief. I have absolute trust in my RO.

Your take...

Best,

AJ

monte1111 profile image
monte1111 in reply to westof

That is so freaking great! I'm not saying anything more. That is so freaking great!

westof profile image
westof in reply to monte1111

Hmm... Hey Monte, Thanks!

The reason I asked TA for his take, is that my RO wants to see me in 6 months.

If I'm cured, Why??

Best

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

another DRE maybe? Many romances start that way....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 6:47 PM EST

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

Hmm... No, he just inserted his finger and just felt around the inner rectum.

Romance?? Yep, I love the guy.

From the beginning he gave me his time and talent.

He even laughs at my unique sense of humor ( he would double over with yours!)

Best

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

Then it can't be Dr. Zelefsky....cause he thought I was f and n crazy.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 6:59 PM EST

Drphil1938 profile image
Drphil1938 in reply to j-o-h-n

Your awful sometimes!🤣🍸🍸🤠

j-o-h-n profile image
j-o-h-n in reply to Drphil1938

All the time...............🤣🍸🍸🤠

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 7:40 PM EST

Boywonder56 profile image
Boywonder56 in reply to j-o-h-n

Youre the best j.o.h.n.......now sit down

in reply to j-o-h-n

😂😂👏🏼👏🏼

monte1111 profile image
monte1111 in reply to westof

Hopefully j-o-h-n is wrong (again). I've had 5 DRE's. Each dr. didn't believe the other dr.? He does need to pay for his boat. And I would surely want someone to be on the alert. Just in case.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Wrong again (sobbing uncontrollably).....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 7:04 PM EST

in reply to westof

😂 why ? Why not ? They need the money ? .. realistically you should continue testing . I like an optimistic doctor . 🌵

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

The best freaking news I heard all day....Now if my wife comes home with some chocolate chip ice cream I think I'll have an orgasm.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 6:39 PM EST

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

Thanks Bud,

Best

depotdoug profile image
depotdoug in reply to westof

I’m confused. Did your HDR Brachytherapy/IMRT do the job or was it combination of Lupron Zytiga prednisone?

westof profile image
westof in reply to depotdoug

Hey Doug, it was a combo of all 3.

I'm still on meds for another year, however my nadir has been 0.014 for almost a year.

When I asked him if other scans were in order, he said "nope"

Best

depotdoug profile image
depotdoug in reply to westof

Ok I understand now. I too am banking hoping I can get my MO to get me Scanned in March. Like March 10/11 on my next appointment visit, 3rd Lupron and continuing Zytiga/Prednisone combo mix.

Dec PSA 1.100. Jan22 PSA 1.50. Not low or lowest I’d been anticipating. But I know a SCAN re: CT Abdomen/pelvis, NM body bone scan, or 68Ga-PSMA-11 PET are only effective detectable for PSA’s above 3.0+++. Think I got that right.

Guess I’m a SCAN Fan.

Thanks ...

depotdoug profile image
depotdoug in reply to westof

That is wonderful great absolutely astounding news right from your RO! Cured! Healed!

westof profile image
westof in reply to depotdoug

Doug, I've been on this trip for 18 months and I just feel blessed.

As I had mentioned to " my darling wife of 46 years", "If didn't know that I have cancer, I wouldn't know that I did".

Side effects, too few to mention. except for loss of libido and the remains of poor "little aj" ( formerly BIG AJ, however, maybe just average aj).

I'm going to let this simmer over the weekend and on Monday, I may call my RO for further clarification (what the hell does cured mean!!)

Best,

AJ

depotdoug profile image
depotdoug in reply to westof

Beautiful explanation!

I too am married to lovely wife e will be 44yrs on May15th. I’m on my 2nd ADT LUPRON/Casodex trip. That 1st one was 2008-2013. After 42 IMRT zaps late 2005. Now on my PSMA destined detected advanced Stage 4 metastatic journey. S.E.’s yeh same as yours, libido, no action below the belt.

The positive is Prednisone 10mg giving me much much energy to exercise.

Kind of like the EverReady Bunny Rabbit with claws and teeth and muscles.

My trip thus trip has only been since September 2019 5 months and counting counting....

I’m still concerned about my cardiac health. 1st time on ADT 2008-2013 I had a Sudden Cardiac Arrest May 2011, 12 days CICU + rehab.

Was it the ADT meds or long term alcoholism or both or complicated urology DOUG? Neurogenic bladder, 2 MEDTRONIC interstim neurostimulators implanted, and in my 2nd ICD/pacemaker device.

What’s next?

Wishing you good health good luck and good life (good humour) oh that one taken by j-o-h-n.

My next Lupron office visit is March 10 my 68th birthday.

Keep us posted.

ScanFan(aka depotdoug)

Doug

in reply to westof

That’s great news westy! Good for you . Good that your dr has confidence in you too.. but I can tell you I’ve been clear four years now and I’d never used that word “ cured”.. APC is long winded. We will keep it down as long as we can .. but there is no cure . My doc told me the same two years ago . He’s nuts . I’m not wishing a return on myself, or you either . just facing the reality that I’ll carry this disease to the grave. Im not trying to kill your buzz from your doc’s great words . I hope pc never show its face again to you or I again brother. Ride this good news! I salute you 😎

westof profile image
westof in reply to

Thanks Scott,

Ro stressed the fact that I'm not metastatic and in the beginning, he felt I could actually beat this thing.

However, as Yogi said "it ain't over till it's over"

Best,

AJ

in reply to westof

I’m very happy for you . Good that you caught earlier than I did . I didn’t go to a dr until it was almost too late . Keep rockin the casbah !

westof profile image
westof in reply to

Hmm... Many thanks Scott!

Best

Wings-of-Eagles profile image
Wings-of-Eagles in reply to Tall_Allen

Nice reply and explanation, as always Allen, Thanks!

Wings aka Dan in So Cal

j-o-h-n profile image
j-o-h-n in reply to Wings-of-Eagles

We knew it was you anyway........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 6:49 PM EST

Magnus1964 profile image
Magnus1964

Cure is a bold term. In the field of cancer the term remission is used. Someone with stage 1 or 2 may be treated and have no signs of cancer for the rest of their lives. I know of some cases where the cancer was undetectable for 16 years and then showed up again. Be cautious, use "remission."

SC19 profile image
SC19 in reply to Magnus1964

Thank you both.

So is an undetectable PSA from a localised prostate cancer more reliable for a long-term remission than an undetectable PSA from an advanced prostate cancer? Or Is that an oversimplified way of looking at it?

It just seems that the line is slightly blurred because I read of apparently cured oligometastatic systemic cases.

I know I am looking for a crystal ball which I know nobody has! But thank you for answering what is possible to answer!

LearnAll profile image
LearnAll in reply to SC19

Yes ...that is an oversimplified way of looking at it. There are many factors which come into play when you calculate approximate progression free and overall survival.

Some of these are Nadir PSA , Time to Nadir , Nadir T level, Kinetics of PSA decline, ALP , type and extent of metastases, unusually aggressive type such as Neuro-Endocrine etc ,Hemoglobin, Albumin, other co-morbid diseases, immune status, physical performance level and many others.

This is all about the interplay of all these factors which interact in complex way and if taken together can give some estimate of PFS and OS.

"UNDETECTABLE" PSA means PSA equal to or less than 0.2. Because no other cell in human body is capable of producing PSA, it all has to come from prostate cells and prostate cancer cells.

At 0.2 PSA, there are very small number of cancer cells left but the nature of cancer is that even a few thousand cells have capacity to start multiplying at some point and cause problems for us. Thats why we need to monitor PSA and other parameters /scans even if we have undetectable PSA.

My definition of cure is "not dying from PCa but death from other illness or after living average life span"

Magnus1964 profile image
Magnus1964 in reply to SC19

That is oversimplified. There are too many factors.

in reply to Magnus1964

Remission is our mission 🕊

timotur profile image
timotur

I've always heard a cure is when you die of something other than PCa. I also liked Dr Meyers definition of "durable remission".

dmt1121 profile image
dmt1121

As a stage IV prostate cancer patient, I can say that when I first began my journey, I had a Gleason 9. I had an RP, chemo with lupron and my PSA was undetectable (also a somewhat flexible term).

Seven months after taking a break from treatment my PSA rose rapidly with PSADT of less than two months. I was then told that I was biochemically recurrent....meaning that my disease was systematic. The MO said they would now manage the cancer, as it was no longer curable.

I later had an Axumin Pet/CT scan and found a tumor near my bladder and a lesion on my left femur. I had the lesion treated with radiation.

That makes me stage IV B and I take Zytiga that has kept my PSA very low and will continue to adjust my treatment as needed to slow its progression.

I started with the hope of having a curative outcome and have progressed to managed care for a currently incurable disease. So, I am keeping my PSA very low but it will eventually rise again and the cancer will continue to spread and that's why it is considered incurable.

Treatments continue to improve and there are many promising possibilities but that is the reality for now.

Good luck to you.

Wings-of-Eagles profile image
Wings-of-Eagles in reply to dmt1121

Great summary. Nice way to put it. I believe I will follow your posts. Good job brother!

Wings

dmt1121 profile image
dmt1121 in reply to Wings-of-Eagles

Thanks.

I was trying to give the big picture and answer the specific questions.

Hotrod65 profile image
Hotrod65

No cure for stage3/ 4 PC...it is considered Metastatic disease at that point and only control options, stage 1/2, possible cure if no spread?...Cure very strong word for any type of Cancer, but even then I think we live our lives with a vision of a cocked and loaded gun to our head, just to unpredictable.

in reply to Hotrod65

Yep, thats how we live.. Take care

Zensailor profile image
Zensailor

A stage 1/2 prostate cancer means it is within the prostate. That can be cured. A stage 4 prostate cancer means the cancer has spread to the lymph nodes and bones. Regardless of the PSA, it will return and grow again. It is not curable. Stage 4 life expectancies are 6 months to 3 years for most, 5 years on the outside. More than that is extremely rare.

jfoesq profile image
jfoesq in reply to Zensailor

Zensilor- I think you stats are a bit off. I was and am a stage 4 with several bone mets for more than 7 years. I BELIEVE the 5 year survival rate WHEN I was diagnosed was 30%. I could be mistaken, it is possible the 30% survival rate is the for those newly diagnosed. While not a great stat, I wouldn't describe it as "extremely rare". Obviously, whether "extremely rare" or 30%, I am grateful to still be here 7 years after dx and hope to hang around for a few more yrs, at least.

monte1111 profile image
monte1111 in reply to jfoesq

Agree. I have "extensive" bone mets and I've made it 3 years. I'm 0.1 and sometime <0.1 psa. Chemo seems to have taken care of lymph node mets (at least for now). Like many others, I'm walking on eggs. I'm like the little train, "I think I can, I think I can."

j-o-h-n profile image
j-o-h-n in reply to monte1111

youtube.com/watch?v=LC8g7MB...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 11:08 PM EST

in reply to monte1111

Read that book as a kid. You are exactly right. Keep truckin , I think I can , I think I can? 😂 the little engin that could!

in reply to jfoesq

🤙🏽

Wings-of-Eagles profile image
Wings-of-Eagles in reply to Zensailor

I am extremely rare, Stage 4 Gl 7 in 2012, given 3-5 years. Here I am 7 years plus later in remission for 632 months. Todd in Seattle is here 12 years after a PSA of 3200, still in remission ,undetectable on Zytiga.

in reply to Wings-of-Eagles

Fantastic wings-of-Eagles! I’m at five years myself. The fact of only 30% of stage 4 s making it to five years is real . You, I , and Todd in Seattle are the lucky ones. 🙏

in reply to Zensailor

Hey Zensailor. What you say is true. I’m coming up on my five years past #4 dx. It’s a dam miracle ..

Don_1213 profile image
Don_1213

Interesting discussions - from optimism to perhaps reality.

My RO has used the word "cure" a number of times - before treatment (IG/IMRT/ARC 81Gy) it was what he was seeking to do, and then after the first PSA read of "undetectable".. he gave me a high-5 and said "Cured!"

My MO has sort of followed the same pattern, working toward a "cure" before treatment started, and then congratulating me on being cured after treatment.

My urologist has been circumspect - he acknowledged that what the treatment regime we going to do would seek a "cure" - but he never promised it. Nor has he said "cured" since treatment has resulted in multiple "undetectable" PSA reads. He is very conservative in his approach to patients.

My thinking is - since I am a G9 (perhaps G10.. that's a longish story) - I have to be realistic.

The best I'm hoping for is a durable remission, and dying eventually of other than PCA. I'm still on Lupron - 15 months so far. I'm planning on my next shot being my last shot - and then monitoring the heck out of my PSA. And hoping it stays undetectable for a long long time. If it starts back up - then it's time to worry about it - until then, I'd be delighted to stay in remission.

I have no intention of ever claiming to be cured. That's poking cancer and challenging it.. I have too much respect for the power of PCA to do that.

in reply to Don_1213

Agreed Don .

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

Let me put it this way....You may divorce your wife, but you're never cured.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 6:35 PM EST

in reply to j-o-h-n

Haha . Divorce although painful is simple compared to divorcing APC ....

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

That's what you think...... 🤢🤢🤢

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/07/2020 11:21 PM EST

in reply to j-o-h-n

I know nothing? 🧐

Hotrod65 profile image
Hotrod65

5 yrs from a 3-6 month DX.. Immunotheraphy 47 infusions currently has me Complete Durable Clinical Remission NED..how long can I keep it going is anybody's Guess?, Even my Doctor's don't know as this is Unprecedented for my response for Stage 4 MPC with targeted treatment..the Medical Community Worldwide are closely monitoring me.

SC19 profile image
SC19 in reply to Hotrod65

Congratulations Hotrod! This is what confuses me though... are the goalposts of what is curable/incurable shifting with new treatments?

Hotrod65 profile image
Hotrod65

I guess I would be a believer that is true..with the Advent of new targeted therapies alot is unknown long term on its success or negative side effects over time, but I'm still here and great Quality of Life as well..no debilitating forms of conventional treatment..(had it all initially), just my 12 week interval infusions , 6 month CT, and yearly Bone scans... unfortunately records and data show I'm possibly the sole patient worldwide with the rare PC Mutation POLE that exhibits a HBM, that qualified me for checkpoint inhibitors Blockade immunotheraphy.

Simply put , no known cure for stage #4 .. doesn’t mean instant death to all . Some slip through and go on for decades.

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