Cancer is in remission : Hi all, went... - Prostate Cancer N...

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Cancer is in remission

ukpete profile image

Hi all, went to see my surgeon this morning and he told me that the cancer is in remission and my PSA is below 0.02, Can’t believe It’s only 5weeks ago that I had surgery, I’m so relieved and happy. It’s hard to believe that about 4 months ago I didn’t know what a prostate was, I didn’t have any symptoms and led an active normal life, after a routine blood test it showed my PSA was 14, then after a MRI scan and biopsy found I had a Gleason score of 7(4+3), I decided to have surgery and the rest is history, along with the catheter which I hated,

My life has definitely changed as has my outlook on life, I’m still taking it easy and hopefully should be ready to return to work maybe in a month,

Thanks for all your support and advice but the biggest thanks goes to the NHS, amazing

I’m so happy, love Pete xxx

31 Replies

Great news Pete! Heres to the many more years You have now thanks to NHS and the Grace Of God! Congrats Pete! keep us in on more progress and how things went after removing the cat!

That’s great news Pete, congratulations.

Hugh

Congratulations. Glad this all worked out well for you.

Pete,

You are far from being “in remission” or “cured”. It’s only been 5 weeks. If your PSA is <0.02 at 5 years you can start thinking in those terms. But congratulations on your first of many upcoming PSA tests being negligible.

ukpete profile image
ukpete in reply to leach234

Sorry I’m confused? I was face to face with my surgeon, I could of sworn he said I was in remission, well that’s certainly put a downer on things. What word should I use instead of remission then over the next 5 years? Can’t wait to tell my wife, family and friends this good news

Justfor_ profile image
Justfor_ in reply to ukpete

After prostatectomy the vast majority of patients score a very low PSA, also referenced as "undetectable". So, you are one of them. As time goes by, a number of them witness PSA rise to a value greater than 0.2 which is referred to as "BioChemical Recurrence" (BCR). This percentage varies between 20-30% depending on a number of factors. If this BCR point is not breached within 5 years post surgery, there is a 95% probability that it will stay that way for a very long time called "durable remission". Today, a single low PSA value only tells you that you do not belong to the extremely unlucky group tagged "persistent PSA" which is a nice way to say that surgery has failed. There is no assurance of what your future will bring. You will have to monitor your PSA for the years to come. In your shoes I would tell my friends: "So far, so good".

leach234 profile image
leach234 in reply to ukpete

So far so good.

ukpete profile image
ukpete in reply to leach234

I can live with that

leach234 profile image
leach234 in reply to ukpete

I’m at 3.5 years (Gleason 8)! PSA Still <0.02 but test every 6 months still is a very nervous time. That’s something you will have to live with.

Justfor_ profile image
Justfor_ in reply to leach234

No need to get nervous leach234, you are in a privileged position.

According to the graph published in this paper: "Biochemical recurrence-free conditional probability after radical prostatectomy: A dynamic prognosis"

onlinelibrary.wiley.com/doi...

by being undetectable for 3.5 years you have a ~90% chance of staying BCR-free (BCRFS) for the next 5 years and a little less for the next 10 years. You may get more exact numbers by entering your data to the following nomogram:

Nomogram and initial BCRFS curves, for example directly applicable to Pete.
dentaltwin profile image
dentaltwin in reply to leach234

Esp. if you're changing labs, values can't always be directly compared. I had one reading over threshold, and I was ready to get my affairs in order. Went back to MSK, and the reading was back below threshold (<.05 ng/ml). As far as "remission" or "cured"--many docs would break out in hives if you said that. But my brother (whose staging was somewhat worse than mine), after his RP, his surgeon (not one given to humility) pronounced him "cured". He's out about 11 years or so; his PSA never went to zero; his readings were always 0.1. Then he got a 0.2 reading--obviously concerning. Then it went back to 0.1; more recently had another 0.2 reading, followed by 0.1 again. So I don't know if his surgeon left a bit of prostate behind (it was done open--shouldn't have happened), but--he's fine, and maybe his surgeon was right.

Congrats Pete

Stay positive and don’t worry about being in remission or otherwise. If your oncologist said so, then take his word for it. It’s still early days yet, glow in the good news and in the present.

Take good care ❤️

Haniff

Hi. Great news!My husband was also told recently that he’s in remission from Prostate Cancer, following radiotherapy and, since he also has leukaemia, we’re happy just to hear the word remission.

On the Prostate Cancer U.K. website it says that in remission means no sign of cancer, but no guarantee that it won’t come back… surely that the best most can hope for… so well done! Enjoy!

Lots of luck and good wishes Pete!

Stay safe, Fran 😷

Yes that’s exactly what I thought, and best wishes to your husband, luckily I have escaped the radiotherapy xxx

Congratulations on the great news Pete!!! When you have no sign of cancer you are in remission - 5 weeks or 5 years it is still remission. 5 years is a milestone that many of us are looking forward to but the PSA tests continue forever. Stay Strong - Enjoy Every Day!

Great news. Many, like myself will be at undetectable PSA levels 10 weeks after surgery (when post op is usually taken). Unfortunately....if there are random PC cells in the body...they may start expressing themselves after a while...for me...14 months post surgery my PSA gradually went from undetectable (below .01) to .16...and all agreed it was time to start ADT and 2-4 months later 38 sessions of radiation. It has been a year now and PSA has remained below .01 and Testosterone is in teens with antagonist version of ADT (oral). Catching PSA before it hits .2 seemed a strong recommendation for a shot at possibly getting to remission (5 years no PC evidence). I am hoping to stop ADT at 18 months as new evidence is that high risk patients like myself may not get significant bump from 3 years of ADT. You have to work hard to overcome low T effects (Resistance Training). I wish you a prolonged state of low PSA!

Glad to know that your course is so good. You will want not to think about PCa. Understood. But you will want to watch the remission and make sure that it stays remitted. You may also want to consider joining a support group for men with PCa. The first two weeks after the catheter came out were some of the worst, most despondent of my life. I struggled with incontinence; happily, things came under control. Good luck to you, sir.

ukpete profile image
ukpete in reply to dadzone43

I had the catheter removed 3 weeks ago and I’m doing really well, hardly any leaks, I’m booked in to see the specialist regarding erections and sex next, I was feeling confident and positive until I wrote this post, feeling a bit down now, don’t think I’ll bother anymore x

Looks like I’m jumping the gun a bit here, like my cup is half full. Maybe I feel like this because I definitely know my little cancerous prostate I had 5 weeks ago is now gone, and my bone scan is all clear, obviously my PSA is below 0.02 so I’m maybe feeling positive, I do know I will be having blood tests forever and hopefully I will get there, I just can’t feel negative and if the PSA goes up I and my hospital will deal with it, I actually wish I hadn’t put this post on

Sounds like the margins were good, great job. I’m guessing they did a pathology on your prostate and nothing showed up along the cut lines of surgery, so that would be a good development for you and may provide the surgeon with some confidence that they “got it all.” Not a guarantee of course.

There is such a wide range of experiences with PCa. Your cup is more than half full. I am nearly three years since surgery, remain with undetectable PSA and every three months have to go through the anxiety of re-testing. And, yes, keeping a positive/up attitude is really important for health and for your immune system.

ukpete profile image
ukpete in reply to dadzone43

My good friend had the same Gleason score as me and when he had his first PSA test it was 0.1 he ended up having radiotherapy, that was 9 years ago and he’s now fine, maybe I should stop being optimistic, I will carry on living each day as it comes and deal with whatever is in front of me

Anomalous profile image
Anomalous in reply to ukpete

That’s one reason I suggested the DECIPHER test on the biopsy, or in your case, the prostate, so you can know what to expect. If it is low risk, there is a very very good chance you’ll never be bothered with it again

ukpete profile image
ukpete in reply to Anomalous

My surgeon said that the surgery was successful and the lymph node he removed was cancer free, That maybe gave me a false sense of optimism, I’m planning on going back to work in about 4 weeks because I actually feel physically good, I certainly don’t know what to do now after writing this post

Aodh profile image
Aodh in reply to ukpete

Hi Pete, please don’t be discouraged; everyone is different, their cancer is different. You’ve undergone significant surgery, your surgeon said it was successful.

It’s time to focus on your recovery, physically and emotionally. You still have a bit of a bumpy road ahead of you.

Remission is either the reduction or disappearance of the signs and symptoms of a disease such as cancer. The cancer may come back or it might not. Even if it does come back you would still have treatment options. By having regular PSA blood tests your medics can monitor it for you.

You can’t live in an unknown future, other than in your own head; therein lies madness.

You can live now, for now according to your surgeon the cancer has been dealt with, so you can focus on your recovery. Be happy that you’ve removed your immediate risk from cancer and rejoice with your family and friends. None of us know what’s in our future or even if we have one.

Live in the day as best you can, being alive is the best place you can start from!

Hugh

We’re all like parking meters ,Pete, by being vigilant and getting Pc treatments and doing other healthy things, we’re adding in more coins and thus getting more time on our meters, more time to enjoy our Lives , but the meters are always winding down, so gotta remember keeping a heathy up-attitude , exercising, and diet adds more coins in as well. Every single one of us will run out of money one day and then the meter finally expires , so then we gotta move to another place and its a way better space! It’s ok that We all end up there eventually , cause its actually where we came from, before we parked here, lol, then someone else gets our spot here and they get the meter that begins again and again…And Its all good in its Grand Divine Design in this meter-time world as long as we are happy and grateful and experience as much love here with our family , friends and ourselves as we can get our little hands on..so check your pockets often and take care Pete

Congratulations!!!

Awesome news 👍

Good news ....but dont you have to do hormone therapy for 2yr?..lupron?..heard no reference...

ukpete profile image
ukpete in reply to Boywonder56

No mention of this to me either?

Think its soc....std. of care....maybe t.a. will chime in

Great news, your story is very much like my experience with a little more history behind me. I had my prostrate removed in August of 2015 by a very good surgeon with a Da Vinci robot.After removal my PSA was undetectable for a period of 2 yrs 9 months. At which point it started rising. Not very much but it was an increase which my Doctors said was unacceptable. At that point radiation of the prostrate bed was recommended. That was 35 treatments over a period of 6 or 8 weeks. I survived that ordeal and so far my PSA has been undetectable. Now being end of October 2021, I keep hoping for an undetectable PSA level. My Doctors have never used the term in remission. I think once this is present in your life it becomes something you live with. Good luck to you and others affected by this disease. I feel this is something you need to stay on top of. Be happy there is help out there for us.

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