Stage 4 , cure or remission ?

[reconjj]

Hello All , as a new stage 4 dx with 1 lymph node in pelvic area , 3 fractions of SBRT then 25 sessions of IMRT coming soon . Given ADT , Eligard , 6 month . Recently saw MO to start abi. , Zytiga soon . So the question , it was mentioned , there is a chance for a cure after all radiation is complete ?. Has anyone gone down this same path and was cured ? I shure would be happy with a very long remission with ADT going forward . I would like to hear from someone who dodged the bullet . Thanks

[Magnus1964]

A "cure" would be great but we never say cure. Remissions are long or short term. With radiation you have a shot at a long term remission. But there are lots of ADT drugs to provide more "remissions" should your radiation fail.

[Tall_Allen]

There is every reason to believe you will be cured, not just a remission. Your last SBRT to the prostate would have been curative if the cancer was fully contained. Unfortunately, some cancer had already escaped into your pelvic lymph nodes. Now, if the cancer is fully contained within the pelvic lymph node area that you are irradiating, and if any strays are annihilated by ADT+Zytiga, you will be cured.

[Scout4answers in reply to Tall_Allen]

Great time to talk about your statement about ADT and Zytiga, as I would better like to understand what they actually do and how they work at doing it.

strays are annihilated by ADT+Zytiga, you will be cured.

some have said cancer cells are only shrunken or put to sleep by AZT and Zytiga.

by what process do they kill cancer cells?

[Tall_Allen in reply to Scout4answers]

Many hormone sensitive cancer cells that are trying to replicate but can't, die.

[dhccpa in reply to Tall_Allen]

The cells that don't die are simply not hormon-sensitive, even immediately afrer beginning ADT?

Amazing how many basic questions I've never really known the answer to.

[Tall_Allen in reply to dhccpa]

It is true that hormone-insensitive cells are not killed by ADT, although they would grow a lot faster with any testosterone present because the number of androgen receptors increase. Hormone-sensitive cells may not die if they are dormant.

[Scout4answers in reply to Tall_Allen]

How can you say with any certainty "you will be cured" if ADT and Zytiga are only killing hormone sensitive cells?

[Tall_Allen in reply to Scout4answers]

Because he is still hormone sensitive - in fact, he is ADT naive. I don't know for a fact that he will be cured, but there is every reason to believe that he will be. This therapy has had great responses.

[Scout4answers in reply to Tall_Allen]

So what you meant to say is that you could be cured but we will only know that with the help of hind sight in the future. Or maybe the odds of it not recurring are better than 50% ( pick any number that you like).

[Tall_Allen in reply to Scout4answers]

No, I said what I meant to say. Please don't try to put words in my mouth.

[Scout4answers in reply to Tall_Allen]

we do agree that there is every reason to believe that he will be. This therapy has had great responses.

I will leave it at that...

[Haniff in reply to Scout4answers]

Dear Scout4answers

I agree with what you say, "So what you meant to say is that you could be cured"

You are right, agree...👍 Many here tend to take issue with language of words, ignore and stay true to what you wrote...😀

Haniff

[Concerned-wife in reply to Scout4answers]

I appreciate the good questions you ask. And Tall-Allen’s answers, of course.

[treedown]

I had more LN involvement and more IMRT than you and have recently stopped ADT to seen if my curative treatment in fact cured me. Next PSA test is March.

[Hidden in reply to treedown]

May your T go up and your PSA stay undetectable!

[reconjj in reply to Hidden]

Hello , I still have a prostate . I received primary SBRT in 2016 . So Im thinking I will always have psa numbers ? Thanks

[Hidden in reply to reconjj]

I’ve never gotten a very good answer on what to expect PSA-wise but <.1 is generally what they are looking for. I think. But then you run across people who are stable at a higher rate and I think stability is good also. Ask for a PSA test 1 month out and hopefully it is <.1 and stays there

[treedown in reply to Hidden]

Thanks, T came back slightly above baselinein 3 months and no change on PSA in Dec. tests. Next step March tests.

[Hidden in reply to treedown]

If you are below <.1 i think you should be happy

[treedown in reply to Hidden]

My PSA was <.04. Apparently Quest changed their standard PSA test to go this low. Last 2 were this low and prior to that <.1 since spring of 2020.Being happy about good test results is complicated by the fact there's always another one not very far down the road.

[Korvgubbe]

i have never heard of metastatic pc healing, sorry

[Merlin1960]

My husband has no sign of cancer , has had lots of treatment, Gleason 9 met to spine and pelvic lymph node , targeted radiotherapy to spine, surgery , more radiotherapy to prostate bed /lymph nodes and was on casodex/ zoladex for 16 months . Been off all meds just short of 2 years and still undetectable, best of luck to you

[TottenhamMan]

I was diagnosed with Stage 4 Ductal adenocarcinoma of the prostate in October 2020. My diagnosis was Gleason 4+4 with one suspect pelvic lymph node. I also had some seminal vessel involvement, so surgery was ruled out. I had a bone scan which indicated no metastasis. My PSA at DX was just over 12. I was put on Eligard in November 2020 and by March 2021 my PSA was just over 2 and my T was 0.5. I then had 25 weeks of EBRT to the pelvis with an additional boost to the prostate. In late Summer of 2021, 3 or 4 months after completing EBRT, my PSA had dropped to <0.1 which is apparently considered to be undetectable. My Oncologist said that she was treating me with “curative intent”. I had another bone scan in the fall of 2021 which was also negative for metastasis.

The Eligard ADT is giving me a beating but I have no other complaints about my current status. I don’t consider myself either in remission or cured. In fact, if I was told that I was cured I would probably refuse to believe it in case it jinxed me. I have learned about “sleeping cancer cells” by virtue of reading posts on this forum. I have also learned about the potential for cancer stem cells awakening in the future and the cancer coming back with a vengeance.

I think I could say that given my current condition and the level of care provided to me, the FIRST bullet hit me but the doctors thankfully stabilized me. If my doctor had picked up on this cancer 5 years earlier might have dodged the bullet. At this time I’m very watchful and I’m mindful of where the next bullet could come from.

The Elders on this forum will give you good advice and I sincerely hope that you will be cured over time. The best thing to do is stay positive, take nothing for granted, and ask family and friends to pray for you. Eat as well as you can, force yourself to exercise, and enjoy your life. Most of all, don’t worry. Given all of the advances in prostate cancer research, I am sure that a real chance of a cure is coming in the very near future.

[Hidden]

2003, seeds and 25 sessions of IMRT. Mets to T3 & L2. Six month chemo and hormone therapy trial in 2004. Last injection of Lupron in Feb 2010. Start T replacement in Jan 2011. Steady <0.1 each quarter since. Stopping 4 mg T gel twice a week Starting T injections next week. For grins had an ultra PSA done three weeks ago. Rocked in a 0.014. Never say never. My research professor medical oncologist used the cure word in 2010. I have no reason to doubt. Best of luck.

GD

[dhccpa in reply to Hidden]

You did six years of continuous Lupron before stopping and then supplementing T?

[Hidden in reply to dhccpa]

Yes. MO had to convince me to stop, then had to convinced me to start T replacement. He said worse case scenarios is that your PSA rises which I would restart Lupron/Eligard. The word vacation was not even in my radar scope. I recognized that I had a terrible disease and no way was I going to let the little bastards have a vacation..... however, there are many theories, and I don’t criticize those that do, it is just that it was not something that I dwelled about.

GD

[dhccpa in reply to Hidden]

Sounds like your MO was very independent-minded!

[Hidden in reply to dhccpa]

He was a world acclaimed researcher and professor on Genitourological cancer. I was most fortunate.

[reconjj in reply to Hidden]

Would you mind telling us who your Dr. is ?

[Hidden in reply to reconjj]

Dr. Robert J. Amato. He passed away from Glioblastoma.

GD

[rosatt1]

I appreciate all the comments particularly from Tottenham Man and Tall_Allen. I was Gleason 9 had EBRT and am now on Zoladex alone. I managed to obtain a PSA blood test today and eagerly await result

[EdBar]

I was also dx stage 4 almost 8 years ago. After some aggressive early treatment my PSA was undetectable for a little over 6 years leading to my PCa specialist MO to mention the word “cure”? Around a year ago a very low amount PSA started to show up so in my instance I had beaten it into dormancy but eventually it found a work around to ongoing treatment (ADT). I now view it as living with a chronic disease, fortunately new treatments are becoming available all the time, gonna keep on grinding. You can look at my profile to see what I’ve done during my cancer journey.

Ed

[reconjj in reply to EdBar]

Hello , this past summer during my yearly Uro visit , he said with your low PSAs in the ones , like 1.7 PSA he said you are Cured ! Hot damn Im cured ! So he says let me give you a uPSA blood draw . It came back in the 3s . Off to V.A. for pylarify scan . Yep Stage 4 , metatastic , 1 hot lymph node soon to be radiated , . started 6 month Eligard and now sood to start Zytiga . That cure was shure short .

[dadzone43]

You will find a lot of men here with awesome survival times. You will also find the opposite. You will not find many who say "cure."

[Hidden]

There is No cure for stage#4 we are told. That said. I was the same as you seven yrs ago in March.I was 53 then .I did almost the same imrt and Lupron plus another adt(tak-700) stoping adrenal t. I’m still on it today. I’ve been clear over six years. I chopped the boys and dropped the Lupron 4 yrs back. Some guys have lived decades that had even poorer diagnoses then you and I. It is some sort out f tickled crap game. . Some live some don’t. Do all you can to live healthy and stay for a long time. Quality of life is most important. Good luck 🍀

[Lieto55]

For the first time, parts of the reality of what I'm doing to my physical body, my bus as I refer to it, has hit me. I feel a lot of what I'll be saying here is more me talking to myself. I'm feeling my way in the fog just as everyone else.

I'm in a very similar situation, though I went through RP instead of SBRT. My PSAs have never been above 5 ng/mL. The RP resulted with clear margins, no SV or Local LN involvement. Now a little over 2 years later (it could have been exactly May 7 2021 if I really got my mind around what I was working with), DX Stage 4 with the T10 and pelvic LN involved. Decipher 86, aggressive. Now I'm doing the Latitude strategy along with IMRT/SBRT. Started Eligard in the fall and just started Zytiga/Prednisone this last week. Currently T at 20 (from 600) and PSA at <.01. Thanks to comments on this site, the idea of Zytiga/Prednisone burning out small mets gives me a bit of peace of mind as I grapple with how I need to adjust to remedy the waist level edema that just showed up, some newfound mental fuzziness, and increased amplitude of the hot flushes. The going-in first-order estimate is two years. I've heard folks going for less. I've heard the word cure.

I recognize that I live in the small percentages. If 90% have no issue with ED or continence, I'll be in the smaller group who does. Early on, even getting the biopsy was a push because my PSA was not in the recognized target range. When all was said/done, one of the surgeons indicated that with the development they saw, it was surprising my PSA wasn't in the teens. Clear margins, nothing but prostate involved, but now, mets as distant as T10? So I know mine is a sneaky aggressive bugger. I do not fear it. It's got my personality, working against the odds.

The word 'cure' is too easily thrown around. I get no motivation from it. I do get motivation from the concept of a reasonably certain delay in the 5 - 10 year range. I get motivation from finding ways to minimize the side effects. I get motivated hearing the stories here. I really get motivated by finding new ways to experience my life with new-found perspectives, new priorities, new skills.

It's been a minor slog getting used to Zytiga/Prednisone. It's been less than a week. But I try not to look down. I just get active. I know I'll find a way to get back up to the first step, where I was before I fell down to the second one.

Importantly, I don't think there will ever be a time where I am not testing my PSA. Just as certainly I don't think the continence and ED will resolve by themselves. I have to make space for that, not fear it, just part of me.

So "cure"? It's not really in my vocabulary and I tell my docs that they don't need to use that word, unless it helps them. It means something different to them than it does to me. The reality will prove itself out, sure enough. Delay progression, restore and improve QOL where possible, stay vigilant of new developments, keep a productive psychology, expand horizons, these are realistic goals.

For me, a key skill is learning to live sanely with uncertainty. Without fear. I think for many, that's where faith/spirituality comes in. For some reason, I'm not a big fan of "hope". But I feel we don't get these challenges by themselves. They come with assistance and assistants. They come in all colors. It's rare that one can do a complete life course change and no one can argue with you about it. I can just pick up new interests, drop the old baggage without a rationale, be weightless with no good reason, slow down, fully enjoy when I feel great.

Searching for "cure" for me is a lot like what they say about life and making plans. Life is happening now.

OK. I feel better now. I hope some fraction of this helps.

[reconjj in reply to Lieto55]

Very well spoken . I really agree with you but I am just starting my journey at stage 4 . I can expect what most here are dealing with , I will cross that path in some form ... Im a half glass empty guy and I hope I can become a half glass full guy .

[Lieto55 in reply to reconjj]

Thanks, I felt I'd exploited your excellent question for personal gain. Remember, MANY live DECADES with Stage 4. I'm about nine months into the Stage 4 DX. The majority of men die with some level of PC, but it's not the COD. Today, PSA is virtually zero (regrettably T is nearly there as well...), and time is happening. The tools are evolving rapidly. It's academic to try to guess where I am right now. I don't have a T10 or PLN cancer, and the PSA is zilch. Do I have Stage 4? A Schrodingers Cat moment. And the glass is overflowing with all the great things you haven't experienced yet. It's just new and different. Keep the faith, stay healthy.

[fmenninger in reply to Lieto55]

I concur as using the word “curative” is optimistic but perhaps using pc cell senescence (deep sleep) is more motivating. Stay strong!

[j-o-h-n]

Cure manure. Remission, cognition.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/10/2022 5:32 PM EST

[Eieio]

Very similar situation Glisan 8-9 Lupron / eligard then imrt this last summer. Oncologist started zytiga a year ago with next dec hopefully the end of it . Seems to be working I feel fine no more rush to the bathroom in the car all that. with both meds and radiation there’s a lot of great survival stats. Me personally I don’t know why but it seems like it’s done. That Zytiga did put me into fatigue the first six months. But I kept active , when I mean active I was working on a farm which is something I’ve never done. Quite honestly I don’t think about this anymore. I take my meds in the morning do my follow ups and live life. It does cross my mind once in a while . honestly I just ran across this forum from my email and I wanted to check it out. Zytiga targets the active area, similar to eligard it’s job is to eliminate testosterone. ED is a given and a challenge. Those meds have turned my muscles into soft nonsense. If you do nothing physical it goes faster. I feel like it aged me in one year equal to five. So in addition to the traditional meds I’m also following up with 3 years using (wi zi yan zong pian) It’s a traditional Chinese medical treatment I researched it way back when this started for me. Through my work I had a portal for research white papers that I don’t know are available on the Internet . it’s a cheap herbal supplement that seems to have a pretty good success when used for three years after radiation therapy. CBD seems like a pretty good addition especially if all you’re out there worrying about whether you’re cured or not. Because the word doesn’t really matter. I’m in biological sciences in blood and I have used eastern traditional medicine. Many people call it alternative medicine 70+% of the population , that was the only alternative. The way I look at it it isn’t going to hurt. CBD has pretty good evidence to stop or inhibit cellular mitosis which is when the RNA splits to create the next cell . It’s One of the only inhibitors for Gio blast which is incurable. So in my opinion there’s hope but I’m only a year in and with lesion that moved to lymph’s it didn’t look so good. As others have said in this post. Worry about living your life well and not worrying about your disease state. Because at the end of the day it doesn’t matter.