PSA rising post RP

User

Posted 02 Mar 2018 at 18:53

Hi all

Thought I would pick up here from the welcome section as things are happening.

So I am 8 months (ish) post RP which was apparantly a clean lift of a C (4 + 3) T2c with no invasions to the lymph nodes, 3% tumour with 50% mucinoidal. Good recovery and first three PSA results were 0.05.

Latest result was 0.16 so I have having a retest and a consult.

My gut feel all along was that it was back, call me daft.

I'm trying not to bargain in my head and do the life expectancy numbers game based on so little evidence.

Any ideas on how to get through the next week or so until I can talk to the consultant?

On that front, his BCR breakpoint level is 0.2 but I have heard that getting SRT and side treatment earlier than that increases ones chances. I have to negotiate.

Cheers

Pete

User

Posted 02 Mar 2018 at 19:41

Hi Pete

If you click on my avatar you will see how my progression went if you want to so I won't go through it all now.

The waiting is difficult but to be honest I asked myself if there was anything I could do to influence things and decided there wasn't. What I could do was to carry on living life and doing all the things I enjoy as we won't get the chance of these days again. Whatever is going to happen in the future you will deal with then so try to be pragmatic and enjoy life as you are now. If it's any help to you I found the SRT was OK but required developing a routine to deal with it. My wife learned early on that it was something I needed to be left to deal with myself and I enjoyed the friendship of the others undergoing a variety of RT treatments. I quickly learned that in comparison to many attending the Churchill I didn't really have a problem. As my wife tells me 'don't big up your part sunshine'. She definitely keeps me grounded.

All the best.

Kevan

User

Posted 02 Mar 2018 at 20:06

Hi Pete, I agree with Kevan’s comments. I found it very difficult to say the least when my PSA started to rise about 11 months to a year post prostatectomy.

I pushed hard to get the ball moving and by the time I started HT my PSA was 0.8, much higher than the ideal of 0.2.

I had to get a second opinion to get the RT organised too.

If you click my profile you’ll get my full story.

I had a gadolinium enhanced MRI and then an F-18 Choline PET scan which picked up tumours on my prostate bed and a leftover bit of seminal vesicle.

It is very hard to deal with recurrence but as Kevin has said you do find yourself getting on with life and trying to appreciate each day. My wife and I also went on holiday before salvage RT started.

Let us know how you get on.

Best wishes, Ian.

Ido4

User

Posted 02 Mar 2018 at 20:17

Hi Kevan and Pete

Sorry to hear you are in the same boat as me and further down the line.

I hope you keep on top of it!

My concern is that the consultant will be conservative and need a lot of prodding. We shall have to see.

I do have one question about RT - how long does it take and how much time does it take out of your life? I am a contractor so have concerns I may be forced to end my contract.

Pete

User

Posted 02 Mar 2018 at 20:56

Hi Pete

For me the PSA started to rise 2.5 years after surgery - what a blow it was I can tell you

I was then started on hormone therapy for 2 months then 33 sessions of radiotherapy - Mon-Fri

It’s like a morning job, I’m lucky in that my appointments are early morning so I can get it over with and get on with my day - I’m about 1/3 of the way through right now but can feel totally exhausted at times - usually the afternoon

I’m not sure whether this is physical or psychological though, I do find it a bit stressful as I need to have an empty bowel and a full bladder to avoid unecessary damage to bowel and bladder

Bill

Edited by member 23 Mar 2018 at 11:34 | Reason: Not specified

User

Posted 02 Mar 2018 at 21:30

Hi Pete

I had to get there 1 hour before my appointment to check in and see whether the machine I was booked on was running on time. If it was then I had to have a self administered enema to empty the bowel. Half an hour before my alloted time I had to drink about three glasses of water to fill the bladder. The actual treatment time was about 10 minutes in total. Treatment is totally painless but if you have incontinence issues the holding a full bladder for 10 minutes can be an interesting experience.The reason for the empty bowel and full bladder is to keep them out of the way during RT to minimise the risk of damage to both during the treatment.

I am retired so I was in a much easier position but there were about 4 times out of 33 when the machine was running late so the whole process took about 2 hours as opposed to the normal hour and 15 minutes.

During the SRT I was drinking 3 litres of water a day to keep well hydrated which helps.

All the best

Kevan

User

Posted 02 Mar 2018 at 21:31

Bill

Ouch!

Doesn't sound like a few days off work, get zapped and back in, does it :(

Sorry to hear it is tiring for you.

Pete

User

Posted 02 Mar 2018 at 21:36

I don't see why you would have any problems - it isn't for the urologist to decide whether or not you get salvage treatment. His / her responsibility is simply to refer you to an oncologist because you have gone above 0.1 (if indeed the repeat test is similar to this one). Biochemical recurrence isn't simply reaching 0.2 - NICE defines it as 0.2 or three successive rises over 0.1 or a reading over 0.1 with pathological indicators. J's uro referred him to oncology at 2 rises (0.1 followed by 0.14) and he went onto salvage treatment immediately because his pathology had included PNI and bladder invasion.

If you are in an area where the specialist is a uro-oncologist and s/he is reluctant to act you only have to ask for a second opinion from a different onco.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Mar 2018 at 21:44

Re time and your contract.

1. Some oncos recommend that you have 3 or 6 months of HT before the RT starts

2. Salvage RT is usually given in 37 fractions (just over 7 weeks of daily appointments) although some will give younger fit men 19 or 20 fractions at a higher than usual dose

3. Some hospitals give the appointments at all different times of the day - John was given all 20 appointments at the very beginning and had the 8.30 slot so he just got zapped on his way to work. No enemas in his case (some hospitals only do enemas if a man is not emptying his bowel properly while others make all men have them) and he drank his water beforehand so generally walked in, had his session and was on his way to work before 9am. Once a week he saw the onco for a review so was there a little longer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Mar 2018 at 21:58

Lyn

Thanks for the quick response.

My concern is that they may make me wait for a third test after the one on Monday as those two will have been so close together. As for the referall. I forgot that once it goes into BCR you get a handoff to an oncologist.

I'll have to see how this all pans out after the consult (bloody annoying they are makig me wait until the 20th).

I assume the HT is to shrink the cancer as much as possible before they start irradiating it?

On top of the fear I am having to deal with a lot of anger. I hate the thought of dying while my son is young and am really angry at myself. I know it is irrational and something that I have to work through but there it is.

Pete

Edit: I read your profile after I posted this. I'm sorry you've got so many family members affected. It gives me hope that I can cope seeing what you and yours (and others here) have to deal with.

Edited by member 02 Mar 2018 at 22:01 | Reason: Not specified

User

Posted 02 Mar 2018 at 22:07

Kevan

Thanks for sharing your treatment. I am starting to see it may not be as horrendous as I thought. Like most people my idea of cancer treatment comes from the media so I have a lot pf preconceptions to get rid of.

I learnt a lot about everything up to this stage so I'd better get my pen and notepad out again :)

User

Posted 04 Mar 2018 at 09:37

I've been doing some research and could do with some feedback.

A lot of papers are now suggesting that early SRT (0.1 - 0.2) combined with early HRT improves chances.

I have also been reading that recurrence in the prostate bed is more common than first thought (as opposed to distant).

I have no idea of my situation / chances given my allegedly clean lift with a potential mid range prostate doubling (>3m < 12) and aggressive cells but I intend to fight as hard as I can as I do not want my family to go through what I went through with my uncle passing over Xmas (late stage T4 lung cancer).

I need to go into bat with my urologist to push for early intervention as I know they are going to be conservative.

Any thoughts?

Thx!

PS I know i am in the bargaining stage right now :)

User

Posted 04 Mar 2018 at 11:22

You don’t know they are going to be conservative, at all. Why not wait and see a) what the 2nd PSA result is and b) what the uro says.

I think that if the uro is reluctant to refer you to an oncologist you should insist unless your specialist is actually a uro-surgical oncologist combined. There have been a couple of examples here of surgeons who were reluctant to refer onwards - possibly because it spoils their success rates (which they have to report to the NHS) or because their ego doesn’t allow them to accept it might not have been a perfect op. But at the minute, you don’t know there is going to be a problem so you are going to use up a lot of energy and anxiety for possibly no reason.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Mar 2018 at 12:19

Pete

One year after my RP, my PSA had gone from 0.014 to 0.023. Now, whilst those results are pretty good, my oncologist said there was persistent PSA and recommended SRT. I was T3b and Gleason 9, with positive margins. So, I've started hormone therapy and will shortly start 37 sessions of radiotherapy. I'm on HT for six months and then the oncologist will review.

I did have a PSMA scan which showed cancer in two lymph nodes but strangely nothing on the prostate bed. Thankfully, no bone spread.

Like you, I get angry sometimes. I've 2 teenagers and I'd like to be around for them.

I hope you get a treatment pathway worked out soon.

Ulsterman

User

Posted 07 Mar 2018 at 12:56

Hi folks

Thanks for the kind words.

Got the second result - 0.17.

Had a bit of a wobble when she told me.

I know 0.17 statistically is not really an increase on 0.16 but it still confirms something is going on.

It is going to be a long year...

Pete

User

Posted 13 Mar 2018 at 19:53

Hey folks

Got on my urologist's list for next Tuesday.

Been doing some salvage research and am a little confused. Maybe you can help?

I understand ADT (hormome therapy) but it appears there is more than one type or radiotherapy - A(juvant)RT and E(arly)S(alvage)RT. What is the difference and which is relevant?

Also. if (big if) I have to go down the salvage route, I understand that it could be HRT then SRT, vice versa or both at once. Are any combinations better or is it down to circumstance?

Cheers!

User

Posted 15 Mar 2018 at 06:19

Adjuvant is the fundamentsly the same as Salvage but Adjuvant is done very soon after surgery.

User

Posted 15 Mar 2018 at 12:37

'Adjuvant' means a second cancer treatment applied after the first one. In the case of PCa, adjuvant RT is usually intended to describe RT which was planned before the surgery even took place (as in the patient goes into the op knowing he will be having RT afterwards). Salvage RT is where the op was supposed to sort it but doesn't and a second line of treatment is determined to be necessary. I have never come across an oncology dept or NHS reference to early SRT rather than 'late' SRT but I suppose it could be used to differentiate between a man whose pathology from the op indicates that they might not have got all the cancer (and so decide to go straight to SRT) or where the first post-op PSA test is detectable. 'Late' SRT would therefore be for the man whose PSA rises some time after the first post-op PSA test.

Regardless of whether it is ART or SRT, and early SRT or late SRT, the delivery is the same so it doesn't really matter what you call it.

Research suggests that salvage RT is more successful with at least 3 months of HT beforehand, and preferably 6 months. However, not all oncologists think it is necessary.

Edited by member 15 Mar 2018 at 12:39 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Mar 2018 at 17:05

@francij4 - thanks for clarifying that

@Lyn

Thanks for the additional detail. I will be so glad to get Tuesday out of the way - been very gloomy today thinking the worst. Not knowing how bad it is and what treatment I may be offered really sucks (especially as I dread being put in a position where I may have to debate the issue with my consultant or demand a second opinion).

User

Posted 20 Mar 2018 at 18:59

I now have a shiny new referrall to a urology onco within two weeks.

Options W&W or SRT/SHT. I prefer the latter idea but wifey is a bit catious.

Will post more later.

User

Posted 23 Mar 2018 at 11:02

@Lyn

Hi.

Regarding what you said about HT + RT. I can see the sense but someone else I was talking to said if might be a bad idea because HT might cause the cancer to become refractory earlier. Do you know how do the oncologists reconcile these concerns?

I'm erring on the side of action because I'm getting nervous about my life expectancy right now (less about me but more about fear of abandoning my family by dying). I feel so useless right now.

User

Posted 02 Apr 2018 at 20:52

Quick update - urology onco appointment scheduled for 4 weeks - clearly not seen as urgent...

User

Posted 02 Apr 2018 at 22:22

Originally Posted by: Online Community Member

@Lyn

Hi.

I'm erring on the side of action because I'm getting nervous about my life expectancy right now (less about me but more about fear of abandoning my family by dying). I feel so useless right now.

Sorry Pete, I missed this. The person who mentioned the risk of becoming hormone refractory was muddled - that is a consideration for men who are incurable but not for men considering salvage or adjuvant radiotherapy with HT.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Apr 2018 at 22:09

HI all

I have my urology onco visit in a week and a half and just wanted to check a few things.

I have got my head around the difference between adjuvant and salvage (I wish they had offered the former) but I want to understand what options may be offered and what questions I need to ask.

I understand I will most likely be offered HT with RT at some point (multiple weeks worth) but I want to know what types of HT I am likely to be offered and what the side effects might be.

Is it a good idea to ask about trials? Are there are that are likely to be promising for someone in my boat (G7 T2c with RP with 8-9 month relapse)?

Is it worth asking about life expectancy at this point or am I being too previous?

Finally, I'm really fed up. I'm trying really hard to live day by day but am drinking a little too much and barely hanging on to exercise and diet. I reckon the damn thing pops into my head about every half an hour for a few minutes and stuffs mhy mood up. Any ideas on shutting it out?

At least what I am going through is good first hand data for my thesis!

Cheers

A slightly fed up Pete

User

Posted 18 Apr 2018 at 22:45

Some oncos offer SRT without hormones so it will be useful to hear what the specialist is proposing and then formulate your questions in response - if no HT, why? If HT, which one and why and for how long? If RT is proposed, where will that be targeted and what is the rationale for assuming the cancer cells are in that space. You could also ask whether there is a plan to book PET or other detailed scans to see if there is any visible cancer to target. Also ask what difference the mucinous adenocarcinoma makes and whether that was identified before or after your op.

It is certainly worth asking about trials but for many of these you have to be prepared to be randomised plus the fact that some of it was mucinous PCa may rule you out of some options - if it was John I would be more tempted to ask the onco whether there is anything coming out of the most recent trials that would indicate a 'best course' for you.

You could ask about life expectancy but since we are all hoping the onco offers you RT / HT, you would hope the answer is that you have a good chance of living until something else gets you. Keep hold of the fact that if they offer RT it will be with curative intent.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Apr 2018 at 08:11

Re life expectancy / recurrence free likely hood post SRT check out the nomogram https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

User

Posted 19 Apr 2018 at 08:38

Morning Pete.Ive just finished my SRT treatment. After talking to quite a few men with different oncologists, let's say with 'similar' situations to you and me (I'm aware of the varied nuances) they have been told they are on a curative path.Whilst going through the consent form with my own oncologist,a straightforward almost mans man type bloke with warmth, I pointed out the bit that said,Aim of Treatment- cure cancer, to which he responded quite enthusiasticly and circled it with his pen.Ofcourse I've hung on to that reaction.Despite this being my own individual story,I hope it can offer some positivity for you.Keep up with the exercise and diet,enjoy a few sensible pints,and try and be a bit less fed up.All the best mate.

Paul

User

Posted 19 Apr 2018 at 08:40

Well that gives me a 34% chance of progression free survival on 6 years when I put my details in.

I am now 1 year post SRT......

Ido4

User

Posted 19 Apr 2018 at 21:40

Lyn

Thanks. There are lot of choices about scans (choline etc.) and so on I need to read up on and will ask. I know there are some trials around this, but I suspect they may incvliude travel. As an aside, I had to laugh at the use of choline. I understand choline is one reason omne has to avoid eggs and I so miss my fried egg and bacon butty on a Sunday :)

Generally with trials, I will enquire likewise. I understand that the branch is random but I also understand that if one is on the wrong branch, sometimes they will swap you if the working branch is doing so well. Game on.

I did the nomogram (thanks francij) and with a best guess on my doubling time (not quite enough data) I am 54% at 6 years. Better odds than Vegas tables, I think.

Bestie

I like your attitude. As Brian says - "always look on the brioght side of life" :) I am trying to look at it that with multiple throws of the dice I will eventually roll a critical hit and slay the beast.

Ido

About the same as what I was given for the RP surgery in the first case. I suspect that the longer you go free, the odds start to go in your favour.

User

Posted 23 Apr 2018 at 21:37

I faced up to my fears and did some reserach on Mucosoidal Adenocarcinoma today. I was putting this off because I was worried.

It turns out that although very rare (0.4% - where is my lottery ticket!) a lot of papers suggest it is not explicitly indicative of a worse outcome than "regular" PCA. Pinch of salt needed as with any search of papers but it shows how one can get stressed by partial or sloppy research.

I will give my onco a good questioning too.

As it is rare, I am also going to offer my body (ooer!) to science in the sense that if they need research subjects with rare forms I would be willing to help out. If they are nice, they can also have my body when I am done with it :)

Pete

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