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12 years after prostatectomy and radiotherapy PSA has risen to 8.2

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User
Posted 10 Jun 2021 at 08:47

Hi all and thanks in advance for any help.

I'm now 77 but 12 years ago, with my PSA at 22.3, I had a robotic prostatectomy at Addenbrooke's, Cambridge UK, which unfortunately due to other factors failed to remove all the cancer cells at the margins. So three months later it was followed up with radiotherapy. Even after this, although PSA went down to below 0.1 it did not return to minimum (0.02) so was told cancer might one day return.

Over the following decade PSA gradually crept up until by December 2019 it had reachednd 1.8. Covid then interrupted testing until May 2021 by which time it had jumped to 6.9, and now, just four weeks later, it has jumped again to 8.2.

So this coming Monday (14 June 2021) I go back to hospital, this time to Lister Hospital, Stevenage, for scans and tests. I assume the outcome of these tests will point to a regime of treatments as I have already been advised to expect HT and possibly chemo. 

Several questions are spinning around my head right now. So I would be grateful for any feedback on the following, especially from anyone who is in a similar situation or is currently undergoing HT. 

Q1: How can I find out about the survival rates for men in their late 70s whose PC has returned following surgery and radiotherapy?

Q2: I am aware that HT can have unpleasant side effects but what are the stats to show how much it delays the onset of advanced PC? If PC is diagnosed, how essential is it to agree to undergo HT?

Q3: What alternative / supplemantary treatments are there for patients whose PC has returned and how effective are they? 

Q4: What if I decline all treatments - for the time being at any rate?  What if I choose to wait until I start to suffer pain? 

Advice on any of the above will be hugely appreciated!

User
Posted 10 Jun 2021 at 21:23

Originally Posted by: Online Community Member
Q1: How can I find out about the survival rates for men in their late 70s whose PC has returned following surgery and radiotherapy?

Q2: I am aware that HT can have unpleasant side effects but what are the stats to show how much it delays the onset of advanced PC? If PC is diagnosed, how essential is it to agree to undergo HT?

Q3: What alternative / supplemantary treatments are there for patients whose PC has returned and how effective are they?

Q4: What if I decline all treatments - for the time being at any rate? What if I choose to wait until I start to suffer pain?

1. It varies significantly for each man but for many men, HT is effective for 5, 10 years or more. We have men here who have been living a fairly normal life with advanced prostate cancer for 15 years. 

2. With a PSA of 8.2, you already have advanced or incurable cancer. Having HT will starve it almost immediately and prevent it from spreading further

3. There are no complementary treatments that can halt or slow your cancer on their own. Starving the cancer of testosterone by having the HT, and possibly going ahead with the chemo to distort the DNA of the active cancer and prevent it from multiplying, is the only way to treat. There is some research to suggest that dietary changes can help, but the research is far from conclusive and diet on its own won't help.

4. If you decline all treatments, you are shortening your life. That is your choice and the doctors won't force you to have treatment. If you do decline treatment, there is no point saying that you will start it when there is pain - you might not get any pain. A death from prostate cancer can be drawn out and devastating in terms of quality of life - lymphodema may result in complications and lack of mobility. Spinal cord compression may leave you paralysed. Advanced cancer affecting your bladder & urethra can result in permanent catheterisation, kidney damage, urinary tract infections. Basically, advanced PCa has a negative impact on your quality of life but there may be no pain until it is too late. My father-in-law declined treatment because he didn't think he needed it yet - he was very well for most of the time but then had sudden onset lymphodema which caused kidney damage & heart failure - he died 2 days later.  My dad has a recurrence like you, he is currently avoiding the HT until his PSA doubling rate is less than 6 months ... that is a more reliable indicator than waiting for pain.  

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

User
Posted 22 Aug 2021 at 07:51
Full body MRI with that PSA seems like a reasonable approach to re staging. If the MRI is clear I would be inclined to push for a PSMA scan before any hormonal treatment.
User
Posted 10 Jun 2021 at 15:35

T 

Welcome to the forum. It may be worth contacting the nurses on this site for a chat, the number is at the top of the page. My surgery and follow up RT also failed to achieve the desired results, I am a few years and PSA level behind you. 

Has anyone mentioned the latest scans that may identify the location(s) of the cancer and have a bearing on the possible  treatments. 

Thanks Chris

User
Posted 10 Jun 2021 at 16:23
HT can cause unpleasant side effects, but it's certainly not inevitable. I was on HT for 18 months and didn't find the side effects too bad.

Chris

User
Posted 10 Jun 2021 at 16:30

I think you really need to discuss your personal case with your consultant because there are so many factors that can differentiate you from others. Your age, present state of health, genes, type of cancer you have (there are quite a number of types), among them. It is not certain how you will react to further down the line treatments. Maybe a PSMA scan could highlight where your cancer is as in some cases a few identified spots can be individually treated otherwise you are depending on a treatment such as HT chemo or other drugs treating you systemically. There are rarer treatments if you meet the criteria and sometimes cost. Again, discuss with your consultant the possible implications of withholding treatment now or at a later stage.

Edited by member 10 Jun 2021 at 19:12  | Reason: spelling

Barry
User
Posted 11 Jun 2021 at 00:13

Ask about having a PSMA scan. It can influence treatment for many men, even those with mets. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6237542/

 

Edited by member 11 Jun 2021 at 00:20  | Reason: to highlight link

Barry
User
Posted 11 Jun 2021 at 15:29

Originally Posted by: Online Community Member
Big thanks to all for the above responses.

From reading your replies I am now so much clearer about how to approach the upcoming decisions. In particular, regarding HT I now feel far more positive about it. I find it very helpful to learn the facts, even the difficult ones.


Lyn, I am so sorry to learn about your father-in-law, but at least he did not suffer the worst for too long. Nevertheless it must have been a difficult time for you and your family.

Here's hoping your dad's PSA never gets round to doubling in less than six months!

 

Thank you - that is a lovely thing to say. In actual fact, although we might have disagreed with some of his decisions, Stan was his own man and lived his best life so I have nothing but respect and love for his approach. My dad is also a big personality - he had his prostatectomy when he was 60 and recurrence only in the last few years, he is 84 now so quite happy to take his chances!   

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

User
Posted 14 Jun 2021 at 16:38

That is reasonably good news. Let's hope it stays lowish. I have hemochromatosis for a while the doctors kept trying to pull my Serum Ferritin down to normal (below 300), after a while I got fed up of the treatment and we have found that my Serum Ferritin hangs around at 500 but doesn't seem to get worse, so it is high, but I have not had to visit the hospital every couple of months for the last ten years, to have a  pint of blood drained (can't be a blood donor because of cancer). So yes if your lucky it may level out, if not you have already made ten years post diagnosis you will probably make another ten, and who knows what treatments will come along in that time?

Dave

User
Posted 14 Jun 2021 at 17:06

Thanks for posting, it's always good to read from people who were treated so long ago.   The consultant who said it might come back as it hadn't reached 0.02 was prescient and honest.  Most of us would only be advised when psa reaches more than 0.05 or 0.1 so we won't worry apparently.

Starting treatment at psa 15 seems a reasonable level.  I've read some say 20 and others say do it earlier.

Whether keeping moderately fit and having a healthy diet helps at all is questionable but if it was me I'd be flicking the switches on my lifestyle to reach the best condition I can hoping to slow it and being better able to tolerate treatment.   Walking, eating less fat and sugar and more vegetables is one, although we do that already.  Some want to keep their quality of life and carry on as they are or put things off and that's understandable too.

I hope it takes a while to reach 15.  All the best, Peter

User
Posted 15 Jun 2021 at 23:47

It's not going to be 15 when it's tested it might be less or more and you'll then be more aware of its trajectory up to the next psa test.  It isn't always consistent from what I've seen so you might factor in some what ifs and decide when to start with support from the consultant. If he says 15 you might ask what risks he sees. There might be factors in your case or other findings.

From what I've read HT can make it more difficult but some manage alright.  There is no need to do too much. That will probably have opposite effects.  Not that I know, it's just an opinion from things I read.   

 

User
Posted 10 Jul 2021 at 16:29
Some consultants have a terrible bedside manner and seem to forget that for us this is about life and death and QofL

I would say you wish to record the consultation on your mobile or tablet. Why would the consultant object to that. You can explain that you can never take everything in so need to record the consultation so you can reflect on it in your own time before you ha e to agree with whatever they suggest.

Hope it goes well

Bri

User
Posted 10 Jul 2021 at 19:15
I agree - I think that because of the pandemic, many more patients want to record the meetings because they can't bring a family member or supporter with them, and some consultants just record it automatically now. You could email his secretary beforehand to say that because you will be attending alone and find it difficult to take in information you are intending to record it, rather than spring it on the doctor when you walk into the room.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jul 2021 at 15:18
So, virtually everyone has a phone with a recording facility, so if you have to attend another consultation alone, record the whole event.

Of course it’s polite to ask the Doc if it’s OK.

Cheers, John.

User
Posted 13 Jul 2021 at 15:35
When I attended the “Dear John” meeting to tell me I had cancer, the Consultant had a CD recorder and a big box of tissues to hand in case I shat myself and burst into tears.

I had already twigged I had the Big C, and was totally chilled about it. They gave me the CD of the consultation, which I have never listened to.

But, yes, it’s important to listen to what is said, even if you don’t understand what they’re on about.

Good luck.

Cheers, John.

User
Posted 22 Aug 2021 at 03:58

You will recall that I suggested you try to get a PSMA scan when I responded to your situation on 11th June. Whilst it follows that if your cancer is outside the pelvic area, the full body PSMA scan may be able to identify the number and location of mets. It may then be possible to treat these individually with RT if they are few and outside the treatment paths of previously given RT. Even if the few mets are found and treated, this does not mean that more mets won't grow in time and there comes a limit to how often you can treat them individually. Take a look at this video by a well known doctor in the USA. It is a little dated now, as the C11 Choline scan referred to in the lecture has been bettered by the PSMA scan. https://www.youtube.com/watch?v=60P98QLWf70

I note you are due to have your MRI at Mount Vernon Hopstal shortly. In your situation I would see if you can get a second opinion from an Oncologist there. I had my PSMA scan done at the Paul Strickland Centre which is on the Mount Vernon site and it was interpreted by a Mount Vernon RadioOncologist. At the time you had to be referred by a consultant but I don't know if this is still the case. The cost of the scan was about £2600 and changed my treatment plan, money well spent I think. Your second Consultant seems to have pretermined your situation even before the forthcoming MRI.

If you do opt for the PSMA scan, this should be done before you start HT.

 

 

 

 

 

 

 

 

Edited by member 22 Aug 2021 at 04:24  | Reason: Not specified

Barry
User
Posted 26 Aug 2021 at 12:25

Originally Posted by: Online Community Member
Full body MRI with that PSA seems like a reasonable approach to re staging. If the MRI is clear I would be inclined to push for a PSMA scan before any hormonal treatment.

I agree with francij answer above. Have the MRI scan to see if that identifies any mets. If it does and there are more than would be required for treating oligometastastic cancer at least you know. If it doesn’t pick up anything or maybe only one met then I’d push for the PSMA

good luck

Bri

User
Posted 28 Aug 2021 at 04:16
Result! Don't forget to let us know the result!
User
Posted 21 Sep 2021 at 11:14

That’s great news.  All the best going forward…

Ange

User
Posted 21 Sep 2021 at 19:37

This thread has the tenseness of a thriller, if you don't mind me saying.  It was elating to read your exhileration at the end.

Perhaps you don't want any more speculation as I recall I found it worrying when I was being diagnosed.   However, read on if you want my thoughts.   This could go a few ways.  Either there is something they can treat directly and it will get to a size where they decide and it might be good.   Or you could progress to hormones. Or both.  If it was me I'd be looking up what possibilities there are to make it slow or enable me to handle treatment better through diet and exercise.

I think I'd also investigate possible ways to get other treatment perhaps an in between psa test, although that's always risky as results can vary at different places.   Those things are perhaps just to make it seem like I'm doing something.  But I think I would want to be looking at the options while there is this opportunity.  Waiting 4 months sounds comforting and some would be able to wait, I know I wouldn't find it easy, it depends on your temperament.

It's good that it isn't as bad as you thought and you can wait another four months.

All the best, Peter

Edited by member 21 Sep 2021 at 19:40  | Reason: Not specified

User
Posted 22 Sep 2021 at 13:53

Sounds like great news. It’s always such a worry not knowing what’s going on inside. Really hope your PSA stays stable and you can get on with enjoying life! 

User
Posted 23 Mar 2022 at 21:11
My heart was pounding for three long hours yesterday as I waited anxiously for a call from my oncologist to find out whether he would recommendi I commence the dreaded hormone therapy treatment. My recurrent PSA has risen from 9.5 last October to 12.2 now, which is comfortably above the baseline watermark of 10.0 that I had been warned might be enough for him to trigger a decision on HT treatment.

The reason I am so anxious about HT is I understand it can hit people with a history of asthma quite hard. Tbf I do enjoy reasonably good health on the whole and keep myself very fit. Also I am aware there are plenty on here who have said it was not as bad as they'd feared, but even so, I do have a history of asthma and whenever I get a chest infection it really knocks me sideways, causing sever chest pain and difficulty breathing. On top of that I also have a number of other health issues, eg OAB and bladder incontinence as well as a resident UTI, all of which I fear could be worsened by HT.

The appointment was for 10am and I had been reminded three times by text to be ready fo take the call, which itself was enough to crank up the nervous tenssion, especially as the phone did not ring until 1pm-ish. When eventually it did come it turned out that the consultant was a stand-in for my regular oncologist so I'm guessing my regular onco must have been off sick or something and that this was the reason for the lateness of the call.

However, much to my relief the stand-in said he will be recommending to my regular oncologist that no further action be taken for the time being. So phew! another welcome delay to D-day, the day I would need to decide whether to agree to the dreaded HT!

Although I've been advised there is no definite number that will trigger HT treatment, the onco has indicated that something around 15 would be the next landmark. So he has asked me to get my PSA checked again in three months time. Wish me luck!

User
Posted 24 Mar 2022 at 09:48

In your late 70s you should seek quality not quantity! 

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

Edited by member 24 Mar 2022 at 09:54  | Reason: Not specified

User
Posted 25 Mar 2022 at 03:16

Originally Posted by: Online Community Member

In your late 70s you should seek quality not quantity! 

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

This study indicates 68 Gallium PSMA is more sensitive than bone scan and also an Australian Professor said in a lecture (but can't find link again) that he thought it would replace bone scan in OZ eventually.  https://pubmed.ncbi.nlm.nih.gov/30120038/

Can't find lecture but this supports https://www.prostate.org.au/news-media/news/benefits-of-psma-pet-scans-for-prostate-cancer-diagnosis/

Edited by member 25 Mar 2022 at 03:31  | Reason: Not specified

Barry
User
Posted 25 Mar 2022 at 09:54

Yes I'm with Francij on that. He put it better than I would have. I was going to say:

You're 78 you are probably going to die of something in 7 years, and whatever it is it won't be pleasant (unless it's a heart attack at an orgy). So you may as well enjoy what time you have less. @ChrisJ delayed HT until his PSA got to 1000. Now lifelong HT might be OK, but if you can delay it until the cancer is giving you a problem, you may enjoy your life better for a few more years, and then have a few years on HT before something does kill you.

I am sure your family mean well, but the quality of life argument is too nuisanced for young healthy people.

Dave

User
Posted 25 Mar 2022 at 10:34
Actually I need to correct my quote quality should win over quantity however old you are. All that changes are the thresholds!

As well as Chris there are other examples where PC is discovered late and the HT still works wonders for many years.

Personally I think the fact nothing can be detected AND you are asymptomatic is a reason to delay. Didn't they used to call it watchful waiting? Have they done other bloods etc?

There are a few papers on HT delay and its impact on longevity unfortunately I can't locate them at the moment..

User
Posted 21 Jul 2022 at 15:19
Ah okay- if a hormone holiday is planned, it would be madness to take enza or apa because when you stop jn a year or so, those options would be forever closed to you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Oct 2022 at 17:03

Been on decapeptyl for 16 months about to finish soon psa 24.9 down to 0.01 along with radiotherapy things are ok  hopefully psa stays low when I finish  glad you are having a positive outcome too all the best gaz 👍

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User
Posted 10 Jun 2021 at 15:35

T 

Welcome to the forum. It may be worth contacting the nurses on this site for a chat, the number is at the top of the page. My surgery and follow up RT also failed to achieve the desired results, I am a few years and PSA level behind you. 

Has anyone mentioned the latest scans that may identify the location(s) of the cancer and have a bearing on the possible  treatments. 

Thanks Chris

User
Posted 10 Jun 2021 at 16:23
HT can cause unpleasant side effects, but it's certainly not inevitable. I was on HT for 18 months and didn't find the side effects too bad.

Chris

User
Posted 10 Jun 2021 at 16:30

I think you really need to discuss your personal case with your consultant because there are so many factors that can differentiate you from others. Your age, present state of health, genes, type of cancer you have (there are quite a number of types), among them. It is not certain how you will react to further down the line treatments. Maybe a PSMA scan could highlight where your cancer is as in some cases a few identified spots can be individually treated otherwise you are depending on a treatment such as HT chemo or other drugs treating you systemically. There are rarer treatments if you meet the criteria and sometimes cost. Again, discuss with your consultant the possible implications of withholding treatment now or at a later stage.

Edited by member 10 Jun 2021 at 19:12  | Reason: spelling

Barry
User
Posted 10 Jun 2021 at 21:23

Originally Posted by: Online Community Member
Q1: How can I find out about the survival rates for men in their late 70s whose PC has returned following surgery and radiotherapy?

Q2: I am aware that HT can have unpleasant side effects but what are the stats to show how much it delays the onset of advanced PC? If PC is diagnosed, how essential is it to agree to undergo HT?

Q3: What alternative / supplemantary treatments are there for patients whose PC has returned and how effective are they?

Q4: What if I decline all treatments - for the time being at any rate? What if I choose to wait until I start to suffer pain?

1. It varies significantly for each man but for many men, HT is effective for 5, 10 years or more. We have men here who have been living a fairly normal life with advanced prostate cancer for 15 years. 

2. With a PSA of 8.2, you already have advanced or incurable cancer. Having HT will starve it almost immediately and prevent it from spreading further

3. There are no complementary treatments that can halt or slow your cancer on their own. Starving the cancer of testosterone by having the HT, and possibly going ahead with the chemo to distort the DNA of the active cancer and prevent it from multiplying, is the only way to treat. There is some research to suggest that dietary changes can help, but the research is far from conclusive and diet on its own won't help.

4. If you decline all treatments, you are shortening your life. That is your choice and the doctors won't force you to have treatment. If you do decline treatment, there is no point saying that you will start it when there is pain - you might not get any pain. A death from prostate cancer can be drawn out and devastating in terms of quality of life - lymphodema may result in complications and lack of mobility. Spinal cord compression may leave you paralysed. Advanced cancer affecting your bladder & urethra can result in permanent catheterisation, kidney damage, urinary tract infections. Basically, advanced PCa has a negative impact on your quality of life but there may be no pain until it is too late. My father-in-law declined treatment because he didn't think he needed it yet - he was very well for most of the time but then had sudden onset lymphodema which caused kidney damage & heart failure - he died 2 days later.  My dad has a recurrence like you, he is currently avoiding the HT until his PSA doubling rate is less than 6 months ... that is a more reliable indicator than waiting for pain.  

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

User
Posted 11 Jun 2021 at 00:02
Big thanks to all for the above responses.

From reading your replies I am now so much clearer about how to approach the upcoming decisions. In particular, regarding HT I now feel far more positive about it. I find it very helpful to learn the facts, even the difficult ones.

Lyn, I am so sorry to learn about your father-in-law, but at least he did not suffer the worst for too long. Nevertheless it must have been a difficult time for you and your family.

Here's hoping your dad's PSA never gets round to doubling in less than six months!

User
Posted 11 Jun 2021 at 00:13

Ask about having a PSMA scan. It can influence treatment for many men, even those with mets. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6237542/

 

Edited by member 11 Jun 2021 at 00:20  | Reason: to highlight link

Barry
User
Posted 11 Jun 2021 at 07:57

Originally Posted by: Online Community Member

Ask about having a PSMA scan. It can influence treatment for many men, even those with mets. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6237542/

 

Thank you Barry, will certainly ask about this if I get the chance on Monday. 

Do you know if the PSMA scan is available widely or might I need a referral to somewhere else that does it?

User
Posted 11 Jun 2021 at 15:29

Originally Posted by: Online Community Member
Big thanks to all for the above responses.

From reading your replies I am now so much clearer about how to approach the upcoming decisions. In particular, regarding HT I now feel far more positive about it. I find it very helpful to learn the facts, even the difficult ones.


Lyn, I am so sorry to learn about your father-in-law, but at least he did not suffer the worst for too long. Nevertheless it must have been a difficult time for you and your family.

Here's hoping your dad's PSA never gets round to doubling in less than six months!

 

Thank you - that is a lovely thing to say. In actual fact, although we might have disagreed with some of his decisions, Stan was his own man and lived his best life so I have nothing but respect and love for his approach. My dad is also a big personality - he had his prostatectomy when he was 60 and recurrence only in the last few years, he is 84 now so quite happy to take his chances!   

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

User
Posted 14 Jun 2021 at 14:30

Quick update

Attended appointment at Lister this morning (14/06/2021). Upshot is, consultant will recommend to MDT (Multi-disciplinary Team) that I start hormone therapy treatment once my PSA reaches 15. It's currently 8.2.

Thank you all for your invaluable information and advice above. It's helped me come to terms with the dreaded HT treatment. Fingers crossed the recent rapid rise in my PSA will now slow down and I can look forward to a few more HT-free weeks or months (maybe even years?).

I live in hope!

Edited by member 14 Jun 2021 at 14:30  | Reason: Not specified

User
Posted 14 Jun 2021 at 16:38

That is reasonably good news. Let's hope it stays lowish. I have hemochromatosis for a while the doctors kept trying to pull my Serum Ferritin down to normal (below 300), after a while I got fed up of the treatment and we have found that my Serum Ferritin hangs around at 500 but doesn't seem to get worse, so it is high, but I have not had to visit the hospital every couple of months for the last ten years, to have a  pint of blood drained (can't be a blood donor because of cancer). So yes if your lucky it may level out, if not you have already made ten years post diagnosis you will probably make another ten, and who knows what treatments will come along in that time?

Dave

User
Posted 14 Jun 2021 at 17:06

Thanks for posting, it's always good to read from people who were treated so long ago.   The consultant who said it might come back as it hadn't reached 0.02 was prescient and honest.  Most of us would only be advised when psa reaches more than 0.05 or 0.1 so we won't worry apparently.

Starting treatment at psa 15 seems a reasonable level.  I've read some say 20 and others say do it earlier.

Whether keeping moderately fit and having a healthy diet helps at all is questionable but if it was me I'd be flicking the switches on my lifestyle to reach the best condition I can hoping to slow it and being better able to tolerate treatment.   Walking, eating less fat and sugar and more vegetables is one, although we do that already.  Some want to keep their quality of life and carry on as they are or put things off and that's understandable too.

I hope it takes a while to reach 15.  All the best, Peter

User
Posted 14 Jun 2021 at 23:36

Originally Posted by: Online Community Member

That is reasonably good news. Let's hope it stays lowish. I have hemochromatosis for a while the doctors kept trying to pull my Serum Ferritin down to normal (below 300), after a while I got fed up of the treatment and we have found that my Serum Ferritin hangs around at 500 but doesn't seem to get worse, so it is high, but I have not had to visit the hospital every couple of months for the last ten years, to have a  pint of blood drained (can't be a blood donor because of cancer). So yes if your lucky it may level out, if not you have already made ten years post diagnosis you will probably make another ten, and who knows what treatments will come along in that time?

Thank you Dave. Very encouraging to hear how you've successfully managed to cheat the medics for so long. Long may it continue.

Right now I'm thinking If they offered me just one year free of treatment I'd bite their collective hand off!

User
Posted 15 Jun 2021 at 00:23

Originally Posted by: Online Community Member

Thanks for posting, it's always good to read from people who were treated so long ago.   The consultant who said it might come back as it hadn't reached 0.02 was prescient and honest.  Most of us would only be advised when psa reaches more than 0.05 or 0.1 so we won't worry apparently.

Starting treatment at psa 15 seems a reasonable level.  I've read some say 20 and others say do it earlier.

Whether keeping moderately fit and having a healthy diet helps at all is questionable but if it was me I'd be flicking the switches on my lifestyle to reach the best condition I can hoping to slow it and being better able to tolerate treatment.   Walking, eating less fat and sugar and more vegetables is one, although we do that already.  Some want to keep their quality of life and carry on as they are or put things off and that's understandable too.

I hope it takes a while to reach 15.  All the best, Peter

Many thanks for this, Peter. 

Occurs to me that if some oncologists believe 20 is the magic number then maybe I should hold out and only agree to HT once my PSA has reached that figure?

Re diet etc, I worry that HT could make adhering to my present fit / healthy lifestyle so much more challenging.

 

 

User
Posted 15 Jun 2021 at 23:47

It's not going to be 15 when it's tested it might be less or more and you'll then be more aware of its trajectory up to the next psa test.  It isn't always consistent from what I've seen so you might factor in some what ifs and decide when to start with support from the consultant. If he says 15 you might ask what risks he sees. There might be factors in your case or other findings.

From what I've read HT can make it more difficult but some manage alright.  There is no need to do too much. That will probably have opposite effects.  Not that I know, it's just an opinion from things I read.   

 

User
Posted 24 Jun 2021 at 11:18

Just heard this morning PSA is up to 9.4. So up (edit) 36% in just six weeks. News has hit me hard because I'd been hoping the rate of increase might start slowing down or even go into reverse.

I'm now on tenterhooks awaiting outcome of yesterday's MDT meeting and wondering exactly what they will recommend.

Beginning to look like HT is not as far off as I'd hoped.
.

Edited by member 24 Jun 2021 at 13:05  | Reason: correction

User
Posted 10 Jul 2021 at 14:33

Tomorrow I meet with the consultant to hopefully find out (at last) what course of action the MDT meeting recommends for my PCa. I'm dreading the recommendation will be to start on HT more or less straight away.

But the whole process of meeting with consultants scares me because I have found on more than one occasion in the past that they can get pretty shirty when you ask too many questions. And anyway, when it comes to asking questions I feel hopelessly out of my depth. Years ago, when being informed I needed a prostatectomy - something that filled me with fear and bewilderment - I was allowed only a couple of questions, then told my ten minutes were up. The consultant said he had a long queue and was running late.

I'm also fearful they will use a lot of technical language that I cannot keep up with and I wont therefore be able to make an informed opinion as to whether I will be happy to go along with what they suggest. In the past I have attempted to take notes but found it difficult if not impossible to keep up. But if don't take notes I know I will forget most of what I'm told as soon as I walk out the door. Pretty certain the consultant would never countenance the idea of recording the meeting so wonder how others have coped with these issues?

Any advice on how best to deal with these meetings and the sort of questions I should be asking would be very welcome!

 

Edited by member 10 Jul 2021 at 14:36  | Reason: Not specified

User
Posted 10 Jul 2021 at 16:29
Some consultants have a terrible bedside manner and seem to forget that for us this is about life and death and QofL

I would say you wish to record the consultation on your mobile or tablet. Why would the consultant object to that. You can explain that you can never take everything in so need to record the consultation so you can reflect on it in your own time before you ha e to agree with whatever they suggest.

Hope it goes well

Bri

User
Posted 10 Jul 2021 at 19:15
I agree - I think that because of the pandemic, many more patients want to record the meetings because they can't bring a family member or supporter with them, and some consultants just record it automatically now. You could email his secretary beforehand to say that because you will be attending alone and find it difficult to take in information you are intending to record it, rather than spring it on the doctor when you walk into the room.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jul 2021 at 12:43
Brainissac & Lyn, many thanks for above replies.

It turned out the hosp was happy for me to bring my wife so she came prepared to take notes. However the meeting was over within 5 mins!

The good news is the urologist said that after examining an MRI scan I'd had done a couple of years previously for possible bladder cancer (which turned out not to be the case) he was 'not too concerned' as my PSA was still under 10. When I expressed concern yesterday about using that dodgy scan the urologist reassured me he was aware of the history but completely satisfied with his findings.

He recommended I have a PSMA-PET scan in three months time.

So no hormone therapy for at least another three months. I feel like I have just been given a reprieve from a prison sentence!

Although just before closing the meeting he did point out that if I wanted private treatment the PSMA scan could be done in just a week's time.! H'mm.

User
Posted 12 Jul 2021 at 15:18
So, virtually everyone has a phone with a recording facility, so if you have to attend another consultation alone, record the whole event.

Of course it’s polite to ask the Doc if it’s OK.

Cheers, John.

User
Posted 12 Jul 2021 at 16:12

Originally Posted by: Online Community Member
So, virtually everyone has a phone with a recording facility, so if you have to attend another consultation alone, record the whole event.

Of course it’s polite to ask the Doc if it’s OK.

Cheers, John.
Thank you John. Yes, I will check before going next time I'm on my own. However I did once ask if it was ok to record the session a few years ago but on that occasion the doctor indicated he preferred me to take notes. 

 

User
Posted 13 Jul 2021 at 15:35
When I attended the “Dear John” meeting to tell me I had cancer, the Consultant had a CD recorder and a big box of tissues to hand in case I shat myself and burst into tears.

I had already twigged I had the Big C, and was totally chilled about it. They gave me the CD of the consultation, which I have never listened to.

But, yes, it’s important to listen to what is said, even if you don’t understand what they’re on about.

Good luck.

Cheers, John.

User
Posted 22 Aug 2021 at 00:09

Yesterday (Friday) I had my first meeting with the oncologist who will be handling my case, but I cannot pretend it went too smoothly.

The consultation produced one or two unwelcome surprises. First off, the onco advised strongly AGAINST me having a PSMA PET scan. I was somewhat taken aback by this because six weeks earlier the previous consultant on my case had recommended I go ahead and have a PET scan. Furthermore I was led to believe that because there was a waiting list, he would be adding my name to the list asap. He'd even advised I could have the scan straight away if I wanted to go private. Now I was being told by this onco that the waiting list was too long and besides, it wasn't really necessary for me to have a PET scan anyway. He said I could go ahead and waste £2k-£3k on one if I really wanted but it was unlikely to affect the course of HT treatment I get.

Next, the onco advised me that the prostate bed was clear of cancer. Once again I was disconcerted by this, but only  because he was basing his conclusion on an MRI scan I'd had in 2019 that had led to the radiographer producing what turned out to be a false report of a bladder tumour measuring 30mm x 38mm!

As a result of that report I'd been obliged to undergo a rigid cystoscopy "in order to whip the tumour out."  Now, whilst it was obviously a huge relief to learn that all along there was no such tumour, the insertion of the rigid cystoscopy caused collateral damage to my waterworks that led to immediate, heavy and lasting urinary incontinennce. 

Sadly however worse was still to come from this consultation. The oncologist informed me that, given my prostate bed was clear and that my psa has been rising quite rapidly, the likelihood is that the PCa has spread to other parts of my body. As a result he will be arranging for me to have a full body MRI scan at Mount Vernon Hospital within the next fortnight or so and will determine my course of treatment based on its findings coupled with the outcome of the psa test I also had done yesterday. 

There were other minor matters that also led me to come away from that meeting feeling, shall we say less than inspired. I retain a lurking suspicion that the only reason I have been denied a PET scan is because the NHS is currently overwhelmed and cannot cope.

But maybe I am just being unreasonable?

 

 

 

 

 

Edited by member 22 Aug 2021 at 08:55  | Reason: Mistaken references to 'pelvic floor' corrected to 'prostate bed'!

User
Posted 22 Aug 2021 at 03:58

You will recall that I suggested you try to get a PSMA scan when I responded to your situation on 11th June. Whilst it follows that if your cancer is outside the pelvic area, the full body PSMA scan may be able to identify the number and location of mets. It may then be possible to treat these individually with RT if they are few and outside the treatment paths of previously given RT. Even if the few mets are found and treated, this does not mean that more mets won't grow in time and there comes a limit to how often you can treat them individually. Take a look at this video by a well known doctor in the USA. It is a little dated now, as the C11 Choline scan referred to in the lecture has been bettered by the PSMA scan. https://www.youtube.com/watch?v=60P98QLWf70

I note you are due to have your MRI at Mount Vernon Hopstal shortly. In your situation I would see if you can get a second opinion from an Oncologist there. I had my PSMA scan done at the Paul Strickland Centre which is on the Mount Vernon site and it was interpreted by a Mount Vernon RadioOncologist. At the time you had to be referred by a consultant but I don't know if this is still the case. The cost of the scan was about £2600 and changed my treatment plan, money well spent I think. Your second Consultant seems to have pretermined your situation even before the forthcoming MRI.

If you do opt for the PSMA scan, this should be done before you start HT.

 

 

 

 

 

 

 

 

Edited by member 22 Aug 2021 at 04:24  | Reason: Not specified

Barry
User
Posted 22 Aug 2021 at 07:51
Full body MRI with that PSA seems like a reasonable approach to re staging. If the MRI is clear I would be inclined to push for a PSMA scan before any hormonal treatment.
User
Posted 24 Aug 2021 at 13:13

Originally Posted by: Online Community Member

You will recall that I suggested you try to get a PSMA scan when I responded to your situation on 11th June. Whilst it follows that if your cancer is outside the pelvic area, the full body PSMA scan may be able to identify the number and location of mets. It may then be possible to treat these individually with RT if they are few and outside the treatment paths of previously given RT. Even if the few mets are found and treated, this does not mean that more mets won't grow in time and there comes a limit to how often you can treat them individually. Take a look at this video by a well known doctor in the USA. It is a little dated now, as the C11 Choline scan referred to in the lecture has been bettered by the PSMA scan. https://www.youtube.com/watch?v=60P98QLWf70

I note you are due to have your MRI at Mount Vernon Hopstal shortly. In your situation I would see if you can get a second opinion from an Oncologist there. I had my PSMA scan done at the Paul Strickland Centre which is on the Mount Vernon site and it was interpreted by a Mount Vernon RadioOncologist. At the time you had to be referred by a consultant but I don't know if this is still the case. The cost of the scan was about £2600 and changed my treatment plan, money well spent I think. Your second Consultant seems to have pretermined your situation even before the forthcoming MRI.

If you do opt for the PSMA scan, this should be done before you start HT.

Many thanks for another hugely helpful response Barry. Yes It was directly as a result of your suggestion back in June that I asked about a PET scan and now, after making further enquiries as you suggested, I have just learned that I am due to have a PET scan done - also at Mount Vernon - in mid-October. This will be four weeks after my appt for an MRI scan which has been arranged for mid-September. Needless to say I shall also be following your advice and will not be agreeing to any offer of HT treatment until after the results of the PET scan have been assessed by the oncologist!!

So once again Barry, many, many thanks for your much needed help. I cannot tell you how much I value it.   

Edit: forgot to say, thanks also for the link to the Dr Kwon video. What an eye-opener it was! It will surely help me know what questions to ask in the follow-up to the PET scan.

Edited by member 24 Aug 2021 at 13:23  | Reason: Not specified

User
Posted 26 Aug 2021 at 12:25

Originally Posted by: Online Community Member
Full body MRI with that PSA seems like a reasonable approach to re staging. If the MRI is clear I would be inclined to push for a PSMA scan before any hormonal treatment.

I agree with francij answer above. Have the MRI scan to see if that identifies any mets. If it does and there are more than would be required for treating oligometastastic cancer at least you know. If it doesn’t pick up anything or maybe only one met then I’d push for the PSMA

good luck

Bri

User
Posted 27 Aug 2021 at 23:19

Quite a turn up for the books today. I got a surprise call at 1.05pm from Mount Vernon Hospital asking if it would be possible for me to get there withinn 80 minutes to take up a last minute cancellation for a full body PET scan.

Just a few days ago I'd been informed that the earliest I could expect to get the scan would be mid-October. Because my oncologist felt that would be too long to wait, he'd booked me in for an MRI in mid-September.

So, despite not yet having had my lunch and knowing it would take an hour to get there, I jumped at the chance. I hastily grabbed a bite and hared down the motorway, arriving only just in time.

Phew!

My hope is that the scan will reveal no more than two clear cancer hotspots that can be zapped by targetted radiation. Which, if I have understood things correctly,  might then mean I may not after all need to undergo who-knows how many years of the dreaded hormone treatment.

I have all my fingers and toes crossed, but for now all I can do is hope ... and wait.

Edited by member 28 Aug 2021 at 07:24  | Reason: Typos.

User
Posted 28 Aug 2021 at 04:16
Result! Don't forget to let us know the result!
User
Posted 21 Sep 2021 at 10:46
Whooppeeee!!! I'm jumping up and down inside because I've just heard from my oncologist that following his review of my recent PET and MRI scans there'll be no need to take any further action on my PCa just yet.

The MRI scan showed nothing, and whilst the PET scan did show something small in the lymph nodes in my right groin area he said it' not clear enough to draw any firm conclusions about it. Since my PSA also seems to have plateaued at around 9.5 recently he feels it's too soon to start HT at the moment.

He wants me to get another psa in four months time, so once again it feels like I have been given at least a temporary reprieve from a prison sentence, or something.

YIPPEEE !!

User
Posted 21 Sep 2021 at 11:14

That’s great news.  All the best going forward…

Ange

User
Posted 21 Sep 2021 at 19:37

This thread has the tenseness of a thriller, if you don't mind me saying.  It was elating to read your exhileration at the end.

Perhaps you don't want any more speculation as I recall I found it worrying when I was being diagnosed.   However, read on if you want my thoughts.   This could go a few ways.  Either there is something they can treat directly and it will get to a size where they decide and it might be good.   Or you could progress to hormones. Or both.  If it was me I'd be looking up what possibilities there are to make it slow or enable me to handle treatment better through diet and exercise.

I think I'd also investigate possible ways to get other treatment perhaps an in between psa test, although that's always risky as results can vary at different places.   Those things are perhaps just to make it seem like I'm doing something.  But I think I would want to be looking at the options while there is this opportunity.  Waiting 4 months sounds comforting and some would be able to wait, I know I wouldn't find it easy, it depends on your temperament.

It's good that it isn't as bad as you thought and you can wait another four months.

All the best, Peter

Edited by member 21 Sep 2021 at 19:40  | Reason: Not specified

User
Posted 21 Sep 2021 at 21:44
Many thanks Peter for your helpful advice above. I will certainly be investigating other possibilities, and maybe also arrange to get my PSA checked a bit sooner, if only to be on the safe side.

User
Posted 22 Sep 2021 at 13:53

Sounds like great news. It’s always such a worry not knowing what’s going on inside. Really hope your PSA stays stable and you can get on with enjoying life! 

User
Posted 23 Mar 2022 at 21:11
My heart was pounding for three long hours yesterday as I waited anxiously for a call from my oncologist to find out whether he would recommendi I commence the dreaded hormone therapy treatment. My recurrent PSA has risen from 9.5 last October to 12.2 now, which is comfortably above the baseline watermark of 10.0 that I had been warned might be enough for him to trigger a decision on HT treatment.

The reason I am so anxious about HT is I understand it can hit people with a history of asthma quite hard. Tbf I do enjoy reasonably good health on the whole and keep myself very fit. Also I am aware there are plenty on here who have said it was not as bad as they'd feared, but even so, I do have a history of asthma and whenever I get a chest infection it really knocks me sideways, causing sever chest pain and difficulty breathing. On top of that I also have a number of other health issues, eg OAB and bladder incontinence as well as a resident UTI, all of which I fear could be worsened by HT.

The appointment was for 10am and I had been reminded three times by text to be ready fo take the call, which itself was enough to crank up the nervous tenssion, especially as the phone did not ring until 1pm-ish. When eventually it did come it turned out that the consultant was a stand-in for my regular oncologist so I'm guessing my regular onco must have been off sick or something and that this was the reason for the lateness of the call.

However, much to my relief the stand-in said he will be recommending to my regular oncologist that no further action be taken for the time being. So phew! another welcome delay to D-day, the day I would need to decide whether to agree to the dreaded HT!

Although I've been advised there is no definite number that will trigger HT treatment, the onco has indicated that something around 15 would be the next landmark. So he has asked me to get my PSA checked again in three months time. Wish me luck!

User
Posted 24 Mar 2022 at 09:48

In your late 70s you should seek quality not quantity! 

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

Edited by member 24 Mar 2022 at 09:54  | Reason: Not specified

User
Posted 25 Mar 2022 at 03:16

Originally Posted by: Online Community Member

In your late 70s you should seek quality not quantity! 

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

This study indicates 68 Gallium PSMA is more sensitive than bone scan and also an Australian Professor said in a lecture (but can't find link again) that he thought it would replace bone scan in OZ eventually.  https://pubmed.ncbi.nlm.nih.gov/30120038/

Can't find lecture but this supports https://www.prostate.org.au/news-media/news/benefits-of-psma-pet-scans-for-prostate-cancer-diagnosis/

Edited by member 25 Mar 2022 at 03:31  | Reason: Not specified

Barry
User
Posted 25 Mar 2022 at 09:03

Originally Posted by: Online Community Member
In your late 70s you should seek quality not quantity! 

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

Thanks fancij. Yes, quality vs quantity. Another reason I feel so conflicted about opting for hormone therapy. But my family have different ideas.

 

I did have a CT bone scan back in 2019 but that was for suspected bladder cancer following several instances of blood in my urine (haematuria).  My PSA was 1.8 at that point so the medics were not specifically looking for prostate cancer. The scan was carried out elsewhere by a different team of medics and 'confirmed' a tumour in my bladder, 30mm x 38mm that later, following a rigid cystoscopy, turned out to be a phantom. Though the consultant declined to confirm it, I guessed the phantom tumour must have been merely the 'shadow' from a hip replacement I'd had a couple of years earlier. H'rumph!

 

So mercifully no bladder cancer anyway.

 

By 2021 my recurrent PSA had jumped to 9.4 so I was referred to my present oncologist, who studied that bone scan closely and decided that despite the phantom tumour, he was confident that the scan was otherwise clear enough to be relied upon and that it showed no evidence of cancer in the prostate bed. Therefore, he concluded, the PCa must have escaped to other parts of the body, i.e. I now have advanced PCA.

 

The full-body PET and MRI scans that followed also failed to locate any evidence of cancer cells.

User
Posted 25 Mar 2022 at 09:54

Yes I'm with Francij on that. He put it better than I would have. I was going to say:

You're 78 you are probably going to die of something in 7 years, and whatever it is it won't be pleasant (unless it's a heart attack at an orgy). So you may as well enjoy what time you have less. @ChrisJ delayed HT until his PSA got to 1000. Now lifelong HT might be OK, but if you can delay it until the cancer is giving you a problem, you may enjoy your life better for a few more years, and then have a few years on HT before something does kill you.

I am sure your family mean well, but the quality of life argument is too nuisanced for young healthy people.

Dave

User
Posted 25 Mar 2022 at 10:34
Actually I need to correct my quote quality should win over quantity however old you are. All that changes are the thresholds!

As well as Chris there are other examples where PC is discovered late and the HT still works wonders for many years.

Personally I think the fact nothing can be detected AND you are asymptomatic is a reason to delay. Didn't they used to call it watchful waiting? Have they done other bloods etc?

There are a few papers on HT delay and its impact on longevity unfortunately I can't locate them at the moment..

User
Posted 25 Mar 2022 at 16:43

Thanks again Francij and Dave, your posts have certainly given me much food for thought. The main reason I've even been considering HT is for the sake of my wonderful wife. I really do not want to leave her on her own a moment longer than necessary.

 

So it's all about calculating what is the optimum time to opt for HT. Up to now I've been given a strong steer by oncologists that it's when PSA rises to between 10 and 20, with somewhere between 15 and 20 being some kind of watermark after which HT starts to be less effective. The suggestion that this may not be the case is something of a revelation to me, so I will now do a search for the papers on HT delay to find out more. 

 

Interestingly I've just received a letter today from the onco for my next review in July, together with an authority for more bloods prior to that, namely calcium (C4), full blood count, liver function test, PSA and Urea, Electrolytes and creat (U&E) (UE). Prior to this I have only been asked to do a PSA. 

 

Thanks again, your help is very much appreciated.

User
Posted 21 Jul 2022 at 08:31

Argh! The day I've long been dreading has now arrived.

My oncologist phoned to inform me on Monday that my PSA has risen quite sharply, up from 12.2 in March to 17.5 now. Despite this, my latest MRI scan a fortnight ago is still not showing any growths. Nevertheless he strongly urged me to agree to start HT immediately. So, having already read quite widely and anticipated this sort of scenario, as well as discussing it in some depth on here and with close family and friends, I agreed to go ahead and accept his recommendation.

To recap, I was diagnoed with PCa in 2008 and underwent a RP and EBRT in 2009. The last thirteen years have been totally pain free but not without other complications, namely a very over-active bladder and moderate urinary incontinence as well as ED. Over that period my PSA increased slowly at first but then started to accelerate three years ago.

My oncologist informed me that thiis meant I now had a recurrence of the cancer and that it had already escaped the prostate bed, meaning it is now classified as advanced PCa. He suggested that by opting for HT immediately it could be expected to prolong my life for around a further five to seven years from now. However he would not or more likely could not give any indication as to how long I might survive without HT treatment.

I have discussed with the onco previously the option of having another PET scan (the last one in October 2021 revealed nothing significant) but he is of the clear opinion that oligometastisis is very unlikely in my case, therefore in his opinion there is little point in going ahead with another PET scan. He also feels that any delay in commencing HT now could reduce the chances of it being effective.

I face the future with some trepidation but am determined to make the best of every minute of life I have remaining. There is no point in adopting any other approach.

 

 

Edited by member 21 Jul 2022 at 08:37  | Reason: Not specified

User
Posted 21 Jul 2022 at 09:21
What about chemo too then intermittent HT?
User
Posted 21 Jul 2022 at 12:33

Originally Posted by: Online Community Member
What about chemo too then intermittent HT?
Thanks for raising this point. I did ask about chemo alongside, but was told quite simply, no, it's not a course of treatment they were recommending in my case. It was said with some authority so I sensed there was no point in pressing the matter further.

User
Posted 21 Jul 2022 at 12:53
I am surprised that they are not considering chemo. Are you having dual treatment ... hormone therapy (zoladex, prostap or similar) with one of the newer treatments like apalutimide or enzalutimide instead?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2022 at 13:27
Thankyou for enquiring, Lynn.

H'mm! I was advised to take Bicalutamide f(one tablet once daily) or four weeks and have just taken the first pill today.

After two weeks I will be given an injection at Lister which will be repeated every three months at my local surgery over the next months to a year, when it willl be reviewed.

Providing all is going according to plan, I may then be offered a 12 to 18 month holiday. My oncologist seems very confident that this is the best course of treatment for me.

User
Posted 21 Jul 2022 at 15:19
Ah okay- if a hormone holiday is planned, it would be madness to take enza or apa because when you stop jn a year or so, those options would be forever closed to you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jul 2022 at 08:58
Sounds like you have a plan.

May I ask about your rising PSA? When you said it was rising slowly over the last 10 years could you share some figures to show at what rate it was increasing at. I am interested as i am following a similar path

Many thanks

Bri

User
Posted 22 Jul 2022 at 11:17

Originally Posted by: Online Community Member
Sounds like you have a plan.

May I ask about your rising PSA? When you said it was rising slowly over the last 10 years could you share some figures to show at what rate it was increasing at. I am interested as i am following a similar path
Many thanks
Bri

Hi Brian

Yes, no problem. Have set out my full PSA history on my profile page:

Lifestooshor

Happy to give any more background if it helps.

 

 

 
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