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MISLEADING SURVIVAL RATES

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User
Posted 28 Aug 2022 at 07:30

I read all this crap about 98% survival rates on websites etc etc and curable prostate cancer.

it’s rubbish isn’t it? We just get told oh, 2, 4, 6 years we can’t be sure.

I have been told two years and start HT this week: blood in semen and urine…. PSA 364.

I expect to be dead in a few months. Simple as that.

User
Posted 29 Aug 2022 at 00:53

Getting this rather bad news dumped on you on a bank holiday weekend, when you haven't got work or the routine distractions is bad news. Also all the official support services have decided to close for the weekend and go to the seaside. On Tuesday you should contact your GP, feeling suicidal is an emergency, so don't let them fob you off with it's a six week wait.

Though I like alcohol and recommend it in moderation, it is a depressant. So drink it to relax, but be careful of drowning your sorrows, because you might feel a lot worse the day after.

In most cases when you start HT the PSA will drop to a tiny number and then everything will be fine for a couple of years, and with other treatments it might get pushed back for a decade.

For about 2% of people HT doesn't work, but let's hope you are not in that group.

Until you manage to get some more formal mental health and support, you have got this little forum. Feel free to vent your anger here we've heard it all before. In a few months time, you'll see new people join just as frightened as you are now, and you'll tell them to calm down and have a cup of tea. Everyone on this forum has seen the grim reaper walking up the garden path (for them or a loved one), and we have all told him to bugger off and come back later. Rather surprisingly he does seem to disappear for a while. I know for some he comes back in a few months, but for most of us he seems to forget to come back for ages.

Dave

User
Posted 29 Aug 2022 at 09:35

I was diagnosed in January 2013, PSA was 408.  I had both radiotherapy and HT.  PSA came really down but rose again so my oncologist put me back on HT.  I haven’t had HT for 2 years now and my last blood test in July the PSA was 0.07.

Hope this gives you some encouragement.

User
Posted 29 Aug 2022 at 16:03

Hi SCM

I've been exactly where you've been,me and my wife crying ourselfs to sleep,thinking shall I be around next year.

I'm 53 5 months ago diagnosed with advanced prostate cancer Gleason score 4+4 PSA 2100 Kidneys functioning at 19%

5 months on starting Enzalutamide 3 weeks ago and other treatment in between PSA 1.9 kidneys at 70% OK not climbing mountains yet but feeling a hell of a lot better physically and mentally.

Stick in there things will get better 

Regards Phil 

User
Posted 29 Aug 2022 at 09:02

One off the best posts I have ever seen on here we'll said Dave very helpful at a very traumatic time for scm  very good advice and I am sure with treatment plan in place you will be ok for many years to come scm stay positive πŸ‘ gaz

User
Posted 28 Aug 2022 at 20:01

Loads off treatment options don't loose faith I was gleeson 9 with high psa after 37 fractions off radiotherapy and 14 months off hormone therapy psa now 0.01 don't panic stay positive  πŸ‘

User
Posted 29 Aug 2022 at 14:30

No worries you are in good hands nhs gave me fantastic treatment πŸ‘

User
Posted 01 Sep 2022 at 11:22

Hello SCM.

I know exactly where you are right now. I've only got my full diagnosis on 5 August: T3N1M1b. Gleason 4+5 (9), though my opening PSA was only 64.

I've been told by my oncologist that on average men with my level of advanced cancer survive 3-4 years, though some will unfortunately die sooner, while others will survive longer. So I wouldn't get too hooked up on your 2-3 year prognosis. Every person is different.

Yes, I was devastated and angry. Why me? There have been tears all round.All my retirement plans are out the window. I might not even get to draw my state pension @ 67.

But. None of that is set in stone. With the right treatments and support we may have many, many more years ahead of us.

My advice? Talk to people. Your family. Your closest friends. Speak to the counsellors at Macmillan. Post your worries and questions on here. Get some counselling organised. You'll be amazed at how much love and support is out there just for you.

Our lives have changed  unalterabley, and there's bugger all we can do about. I'm still not good with it all, but with all of the above, I'm getting there. And you will too.

DM me if you want to talk further.

Icky 

User
Posted 28 Aug 2022 at 15:11

As mentioned by Andy, you do need to speak to a specialist nurse so that you can get all your thoughts and feelings off your chest. Your situation can then be explained to you by a professional so that you can then plan for treatment.

 

Ivan

User
Posted 28 Aug 2022 at 16:23

By the way, it would be useful to show on your profile the scores on the doors. You have mentioned that your PSA is 360 something  (high but not super high as PSA scores of 12000 have been known) but need to show your Gleason score, whether the cancer is contained within the prostate etc. That would enable people to respond accordingly.

User
Posted 29 Aug 2022 at 07:30

Thanks Dave: that’s great. You have helped me mate.

User
Posted 29 Aug 2022 at 17:26

Hi SCM ,my OH was diagnosed nearly 7 yrs ago 4+5 at the age of 55 ,spread to lymph nodes .
He’s still working and enjoying life ,just at a slower pace .He had chemo at the beginning ,now on prosap ,Enzo and Abi . PSA has been undetectable for over 6 yrs .
Keep strong and keep posting and asking questions,we’re all here to help one another.
Best wishes Debby

Edited by member 29 Aug 2022 at 17:28  | Reason: Not specified

User
Posted 29 Aug 2022 at 23:28
I wish doctors would not leave patients thinking they would be the worse case in a spectrum. When the cancer is so advanced that it is realized that a man has only say 3 or 4 months or so, I can see the reason for giving a realistic ball park figure so the man and his family can make timely arrangements, although by this time the man and his family would most likely have come to realize time was short anyway. But predicting 2 years forward and without even knowing how a man might react to down the line treatment, yet alone before full diagnosis and response to having initial treatment, seems to me is forecasting remaining time in an over pessimistic way that could cause unnecessary concerning to the patient. Doctors, should therefore be more reticent in giving such precise pessimistic estimates in such circumstances. Actually, many a man has lived well passed such predictions.
Barry
User
Posted 30 Aug 2022 at 23:49

Yes, a very reassuring post Dave and absolutely accurate. 

SCM you have my best wishes... Mentally a bit frazzled my self with another blood test in a few weeks and new trestment starting in October. 

A glass or two of wine or a couple of real beers or a mug of tea and breath deeply. 

Best wishes 

Mike 

 

 

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User
Posted 28 Aug 2022 at 13:37

Hello SCM,

Sorry for what you're going through.
I think you need to ask your clinical nurse specialist for some counseling help.

User
Posted 28 Aug 2022 at 13:54

I am so utterly depressed and terrified I just cannot think straight.

User
Posted 28 Aug 2022 at 15:11

As mentioned by Andy, you do need to speak to a specialist nurse so that you can get all your thoughts and feelings off your chest. Your situation can then be explained to you by a professional so that you can then plan for treatment.

 

Ivan

User
Posted 28 Aug 2022 at 16:17

Thanks mate; I have only just been given a name and contact number.

User
Posted 28 Aug 2022 at 16:23

By the way, it would be useful to show on your profile the scores on the doors. You have mentioned that your PSA is 360 something  (high but not super high as PSA scores of 12000 have been known) but need to show your Gleason score, whether the cancer is contained within the prostate etc. That would enable people to respond accordingly.

User
Posted 28 Aug 2022 at 17:09

Originally Posted by: Online Community Member

I am so utterly depressed and terrified I just cannot think straight.

The other thing to do is to contact your GP, who may also be able to get you some emergency support.

User
Posted 28 Aug 2022 at 18:58

Thanks; haven’t got Gleason yet. Waiting for results of biopsy (tomorrow) and have PETscan this Thursday. PSA 364 and sperm and urine full of blood.

Usual  waterworks symptoms too and bone scan found stranding too lymph nodes in the area.

User
Posted 28 Aug 2022 at 20:01

Loads off treatment options don't loose faith I was gleeson 9 with high psa after 37 fractions off radiotherapy and 14 months off hormone therapy psa now 0.01 don't panic stay positive  πŸ‘

User
Posted 28 Aug 2022 at 20:23

If the blood in your sperm and urine is after your biopsy then that is very normal. Can take up to 6 weeks to clear.

 

Ivan

User
Posted 28 Aug 2022 at 20:48

very true I had similar outcome after biopsy πŸ‘

User
Posted 29 Aug 2022 at 00:53

Getting this rather bad news dumped on you on a bank holiday weekend, when you haven't got work or the routine distractions is bad news. Also all the official support services have decided to close for the weekend and go to the seaside. On Tuesday you should contact your GP, feeling suicidal is an emergency, so don't let them fob you off with it's a six week wait.

Though I like alcohol and recommend it in moderation, it is a depressant. So drink it to relax, but be careful of drowning your sorrows, because you might feel a lot worse the day after.

In most cases when you start HT the PSA will drop to a tiny number and then everything will be fine for a couple of years, and with other treatments it might get pushed back for a decade.

For about 2% of people HT doesn't work, but let's hope you are not in that group.

Until you manage to get some more formal mental health and support, you have got this little forum. Feel free to vent your anger here we've heard it all before. In a few months time, you'll see new people join just as frightened as you are now, and you'll tell them to calm down and have a cup of tea. Everyone on this forum has seen the grim reaper walking up the garden path (for them or a loved one), and we have all told him to bugger off and come back later. Rather surprisingly he does seem to disappear for a while. I know for some he comes back in a few months, but for most of us he seems to forget to come back for ages.

Dave

User
Posted 29 Aug 2022 at 07:30

Thanks Dave: that’s great. You have helped me mate.

User
Posted 29 Aug 2022 at 09:02

One off the best posts I have ever seen on here we'll said Dave very helpful at a very traumatic time for scm  very good advice and I am sure with treatment plan in place you will be ok for many years to come scm stay positive πŸ‘ gaz

User
Posted 29 Aug 2022 at 09:35

I was diagnosed in January 2013, PSA was 408.  I had both radiotherapy and HT.  PSA came really down but rose again so my oncologist put me back on HT.  I haven’t had HT for 2 years now and my last blood test in July the PSA was 0.07.

Hope this gives you some encouragement.

User
Posted 29 Aug 2022 at 13:29

Just got phone call with my biopsy results:

Gleason : 4 + 4.

If PETscan is clear it can be cured; if positive then treatable. For now, start HT tablets on Friday and will get a date for HT injection after a month. These will be every three months at local hospital. If PETscan is negative, then surgery or radiotherapy.

Said it’s mid range; not really slow growing but not massively aggressive. All roads really lead to results of PETscan now but there wasnt anything obviously sinister on the bone or CT scans so that’s a straw to cling to.

They want the PETscan as my PSA is 364; I am praying this PETscan is clear obviously but my friends out there do you think this is encouraging so far?

Thanks.

User
Posted 29 Aug 2022 at 13:55

Definitely positive I was gleeson 5 +4 and so far so good 14 months after radiotherapy still on hormone therapy for another 6 months but psa steady at 0.01 stay positive loads off options available πŸ‘

User
Posted 29 Aug 2022 at 14:19

Thanks Gaz.

User
Posted 29 Aug 2022 at 14:30

No worries you are in good hands nhs gave me fantastic treatment πŸ‘

User
Posted 29 Aug 2022 at 14:45

I'm slightly surprised anyone was working on bank holiday, are you in England, or some other part of the UK?

I was a 4+5 so 4+4 is a bit better. The bone and CT scan being clear is very good. As a general rule if someone has a PSA of less than 30 I assume it is prostate contained, and if it is above 100 I assume it has spread. But this cancer is very variable: we have had people with a PSA of 80 without any cancer at all, and people with a PSA of 3 which had already spread.

So a PSA of 364 I would assume was bad, however blood in semen and urine prior to biopsy is unusual and this could mean the cancer is so disrupted in your prostate that the PSA it produces is getting mixed with the blood and hence you have a very high PSA in your blood, but the cancer may not have spread beyond the prostate, in which case you are curable.

With your PSA of 364 the medics would have been expecting the bone scan to have been glowing with cancer everywhere. I bet they have been checking your patient ID and date of birth to see if they have mixed results up. That they have requested a PET scan is almost certainly because the results so far seem unbelievable.

If you had came on this forum with a PSA below 50 and no evidence of spread I would have gave you a 98% chance of being here in five years. With your PSA of 364 and if there was clear evidence of spread I would have gave you a 30% chance of being here in 5 years. At the moment with uncertainty of spread, I'd give you a 70% chance of being here in five years. If the pet scan is clear I would up that to 90% and if it isn't clear I would drop it down to 50%.

I know figures and percentages like this are just averages and we are all different. Reading tea leaves would probably be just as useful as these figures, but you can be pretty certain your going to live more than a few months, even if things were really bad you would almost still certainly be here in two years. Things don't look very very bad, and they may start looking better soon, if you really want to be miserable and think of a life expectancy I'd be looking at ten years. Until I found evidence to move that one way or the other.

If you take up a dangerous sport like skydiving, mountaineering or even motorcycling you might be able stack the odds of not dying of prostate cancer even more in your favour.

Dave

User
Posted 29 Aug 2022 at 16:03

Hi SCM

I've been exactly where you've been,me and my wife crying ourselfs to sleep,thinking shall I be around next year.

I'm 53 5 months ago diagnosed with advanced prostate cancer Gleason score 4+4 PSA 2100 Kidneys functioning at 19%

5 months on starting Enzalutamide 3 weeks ago and other treatment in between PSA 1.9 kidneys at 70% OK not climbing mountains yet but feeling a hell of a lot better physically and mentally.

Stick in there things will get better 

Regards Phil 

User
Posted 29 Aug 2022 at 17:26

Hi SCM ,my OH was diagnosed nearly 7 yrs ago 4+5 at the age of 55 ,spread to lymph nodes .
He’s still working and enjoying life ,just at a slower pace .He had chemo at the beginning ,now on prosap ,Enzo and Abi . PSA has been undetectable for over 6 yrs .
Keep strong and keep posting and asking questions,we’re all here to help one another.
Best wishes Debby

Edited by member 29 Aug 2022 at 17:28  | Reason: Not specified

User
Posted 29 Aug 2022 at 17:55

Originally Posted by: Online Community Member

Hi SCM

I've been exactly where you've been,me and my wife crying ourselfs to sleep,thinking shall I be around next year.

I'm 53 5 months ago diagnosed with advanced prostate cancer Gleason score 4+4 PSA 2100 Kidneys functioning at 19%

5 months on starting Enzalutamide 3 weeks ago and other treatment in between PSA 1.9 kidneys at 70% OK not climbing mountains yet but feeling a hell of a lot better physically and mentally.

Stick in there things will get better 

Regards Phil 

This is a fantastic post Phil. Selfless and simply heart warming.

Good man.

Jamie

 

User
Posted 29 Aug 2022 at 23:28
I wish doctors would not leave patients thinking they would be the worse case in a spectrum. When the cancer is so advanced that it is realized that a man has only say 3 or 4 months or so, I can see the reason for giving a realistic ball park figure so the man and his family can make timely arrangements, although by this time the man and his family would most likely have come to realize time was short anyway. But predicting 2 years forward and without even knowing how a man might react to down the line treatment, yet alone before full diagnosis and response to having initial treatment, seems to me is forecasting remaining time in an over pessimistic way that could cause unnecessary concerning to the patient. Doctors, should therefore be more reticent in giving such precise pessimistic estimates in such circumstances. Actually, many a man has lived well passed such predictions.
Barry
User
Posted 30 Aug 2022 at 23:49

Yes, a very reassuring post Dave and absolutely accurate. 

SCM you have my best wishes... Mentally a bit frazzled my self with another blood test in a few weeks and new trestment starting in October. 

A glass or two of wine or a couple of real beers or a mug of tea and breath deeply. 

Best wishes 

Mike 

 

 

User
Posted 01 Sep 2022 at 10:13
Great posts Dave and Phil. It’s bloomin ordeal that’s for sure. Hopefully you will get your scan soon and have a plan of action. Sending best wishes x
User
Posted 01 Sep 2022 at 11:22

Hello SCM.

I know exactly where you are right now. I've only got my full diagnosis on 5 August: T3N1M1b. Gleason 4+5 (9), though my opening PSA was only 64.

I've been told by my oncologist that on average men with my level of advanced cancer survive 3-4 years, though some will unfortunately die sooner, while others will survive longer. So I wouldn't get too hooked up on your 2-3 year prognosis. Every person is different.

Yes, I was devastated and angry. Why me? There have been tears all round.All my retirement plans are out the window. I might not even get to draw my state pension @ 67.

But. None of that is set in stone. With the right treatments and support we may have many, many more years ahead of us.

My advice? Talk to people. Your family. Your closest friends. Speak to the counsellors at Macmillan. Post your worries and questions on here. Get some counselling organised. You'll be amazed at how much love and support is out there just for you.

Our lives have changed  unalterabley, and there's bugger all we can do about. I'm still not good with it all, but with all of the above, I'm getting there. And you will too.

DM me if you want to talk further.

Icky 

User
Posted 01 Sep 2022 at 12:17

Thanks Ickyjay.

I just cannot eat with fear; so that’s not helping.

I just cannot cope with the APC or the terror of treatment mentally.

If I feel this bad in the head I can’t see the point of living for these expected years to come.

I am sorry to be so depressive but I have to get my thoughts and feelings aired.

User
Posted 01 Sep 2022 at 14:04

Hopefully, you will accept the advice given about getting medication to help ease your concern and get support. You need to adopt strategies so you think less about the ramifications of PCa and to concentrate more on things you enjoy or become involved in or new projects or pursuits. That's what all of us have had to do. Many men on this forum, myself included, have felt that a load had been lifted when we made our treatment decisions and then got treatment underway. But even then most of us get a little anxious when we await regular check-up results years later. Treatment is generally not so bad, although with potential side effects you will have read about.

Barry
User
Posted 01 Sep 2022 at 14:24

Thank you Barry; I appreciate what you say.

 
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