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PSA 320 so scared doesn't cover it

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User
Posted 11 Jul 2017 at 13:11
Hi all.

I've seen many first posts with far more detail/results than this will have, but I can only start where I am.

My husband of 26 years is an awesome man. I'm yet to meet someone who dislikes him & I know how blessed I am to call him mine. For months I'd been asking him to see the Dr as his night urination flow sounded wrong to me. A week ago we were told his PSA was 320 & we feel utterly floored by it. Both of us kinda expected a high result but expecting & receiving are very different as you all know. I knew it should be 3ish. He hasn't done any reading in it as he wants to wait until we see the urologist this Friday, whereas I've probably done too much! From what I've read I'm expecting he'll be told that there are mets in his bones. He's had thigh & hip pain for the last two months which he put down to a pulled hamstring from gardening. Dr sent him to have a simple x-ray on same day as PSA result & gave him a low dose of Amitriptalyne for the pain which is giving him better sleep. He's exhausted all the time, even when his work week has been gentle. Last week he worked from home two days, two days in the office (45-60 min drive each way) & one day off yet is needing to nap for a couple of hours each day or is in bed by 9pm.

We have two teenage kids, one 19 & off to uni in the Autumn & one 17 & off to Ecuador for a month in just over a weeks time to do charity & conservation work. Whatever we're told on Friday we will be waiting until Darling Daughter (DD) is away to tell BoyChild (BC, yup, one of his many names from me!). Depending on how fast things move we may even try to wait until DD is home in late August before we tell them together. Their lives are changing rapidly due to their ages & the whole university/future dreams thing. The idea of bursting their bubbles cuts me to the core.

I'm disabled due to a massive RTA in 2003. I get about mainly with a crutch or two & have chronic pain despite a cocktail of meds. My OH has been my rock, my carer, my everything for so long & I'm scared that I won't be able to be as strong as he needs me to be. I don't know what I'm asking for here, maybe I just needed to say this all to someone. Thank you for reading this.

User
Posted 25 Aug 2017 at 09:58

Hi Mel

Sorry to read your diagnosis, mine was much the same 5 years ago with the pelvis about to break due to the tumors, click on the link and my scan pictures are there on one of the posts, http://community.prostatecanceruk.org/posts/t9698-Simon-Story-Chapter-2#post117233

At the time of diagnosis i had 8 year old twins and never thought i would see them go to secondary school but 5 years on still working full time still enjoying life, if i could offer any advice it would be;

Are they going to offer a short course of RT to the humorous to prevent fracture

Are they going to offer Denosumab injections this is a bone strengthener (i really rate this treatment)

Pleased that they are talking of early chemo i had this 5 years ago and if your husbands is OK for chemo push for it, and by early chemo the key word is EARLY

I have said many times before we spend more time choosing a car or a house than a Oncologist, make sure he specializes in Metastatic prostate cancer, if you are not happy ask for a second opinion.

There are lots of very knowledgeable people on here and we all remember those early days so no question is a silly question

Best wishes

Si  

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Aug 2017 at 00:14
Life can be strange.

After being diagnosed, I was on my way to a hospital appointment, when I met my former Boss on the bus.

I was feeling down, and had not yet went public with my illness.

He had just retired and was heading with his wife for a bar lunch.

He was so excited with the prospect of his retirement,and I was so low.

Six weeks later, I attended this man's funeral.

He took an infection and died in hospital.

This man had not a care in the world, and he was gone.

Sometimes people with life limiting illnesses, have more time in front of them than others, who have apparentry none.

Isn't life strange ?

User
Posted 11 Jul 2017 at 18:30
DEar Flying Blind

You are experiencing that awful time, awaiting diagnosis, that we all go through.

Once you know what you are dealing with, your medical team will come up with a plan for your husband.

His problem could range from a bad infection to -as you fear - cancer. But you do not know yet for sure.

I'm sorry that I cannot offer any assistance to you at this time. It is the worst part waiting for the results but whatever happens there are people here who are in the same boat and can offer sound advice.

The only way through this is to wait it out.

It's awful - we all know - but we will be thinking about you and be ready to help when we can.

Alison

User
Posted 12 Jul 2017 at 00:16
Oh Flying Blind,

I hear you we have also got youngish children 17 and 12 so i know how that feels. Your OH does have quite a high PSA and generally you would expect mets at that level but not always .

If you look at some people's bios Si Ness for instance he has multiple mets with a low PSA he was around 4.6 at diagnosis ( sorry Si if I got that wrong )

Trevor was 13000 at diagnosis and yes multiple mets , Yorkhull was a lowish PSA with mets if you get a minute take a look at these threads because the one thing that will jump out at you is we are all still here over 4 years later.

I hope this somehow helps you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jul 2017 at 07:40

Hi Flying Blind,
My husband had a PSA over a thousand at diagnosis so please don't worry, It will come down with treatment. This is a very trying time while you wait for all the tests and results. My husband was diagnosed after going to the doctor with severe back pain which didn't react to pain killers. His is in the bones. As soon as treatment started his pain reduced and he was able to come off all his painkillers and last PSA was 12. He is on Hormone Treatment and started Chemo 2 weeks ago.

User
Posted 15 Jul 2017 at 08:04

Originally Posted by: Online Community Member
We go away in 10 days for just over a week so OH asked whether we need to cancel that & Doc said something along the lines of "Oh a week or two delay isn't going to make a difference with his cancer, there's no need to rush anything." Now, am I being paranoid, a worry wart, in thinking that means that Doc considers it likely find multiple mets & for B to be T4N1M1, so control not cure? Told that a manner of the MDT will call B with test results but we won't be seeing him until November! Feels a bit like B has been written off, that he's too far down the road to bother with quick treatment or even to do another PSA test. 

No, no, no, you're not being written off. It does look likely that OH will be diagnosed with advanced prostate cancer .... just like me. Have a look at my profile and see how often PSA was tested in my first 15 months, it was every 3 months and I saw my Onco shortly after each of those tests. So just like what they are proposing to do for your OH.

Regarding the holiday. When I was first diagnosed I thought I'd be dead by Christmas. I wasn't. Even with advanced prostate cancer it doesn't progress that quickly. Having your holiday will not make one jot of difference to any progression. With any luck Prostap (very similar to the Zoladex I have had) will protect OH for a long time.

Regarding the mets, if there's just one, it's still advanced prostate cancer. So whether there is 1, 2, 3 doesn't make much difference .... I had 3 and I'm still breathing.

I hope this will help you to relax and enjoy your holiday.

User
Posted 15 Jul 2017 at 10:21

Hi I feel your anguish we had a similar road with Gary , PSA was a lot lower at 23 but was warned it didn't look good .as for the biopsy Gary was advised to wait until after our Amazon holiday because of infection and the location of the holiday .Every thing was put into place for when we returned .unfortunatly it was Gleason 4/5 and Gary then had to have CT /MRI and X-rays to determine spread .Like your OH Gary had pains in hips etc but he also suffers from arthritis .Being over the Xmas period the onco app was held off till early January for results which wasn't a great Xmas but stayed positive for our family .
Garys had spread to lymph nodes but no bone spread ,so no point in operating but was put straight onto hormones and offered 6 sessions of chemo which scared us but luckily Gary had no problems at all still managing to work everyday .Quite quickly the PSA dropped to 0.01 undetectable and has stayed there for well over a year .gary is on the stampede trial arm j which involves a couple of extra hormone drugs and this seems to be holding things back ,the main side effect being fatigue ,and being only 57 he has no intention of giving up work .
Things are different now but we now have 2 beautiful grandsons and try to make everyday count ,even booking a couple of cruises to make sure Gary relaxes .
Thoughts are with you
Best wishes
Debby

User
Posted 25 Aug 2017 at 06:44
Hi Mel. I am sorry to read where your husband and your family are.

I am 52, was diagnosed 3 years ago, PSA 324, T4 N1M1a, spread to lymphs extensively but somehow not bones.

The first couple of months of understanding my prognosis were awful as I could not get my head round it however from then on I have moved on mentally. Life is for living, never waste a day, no regrets and all that.

I had early chemo, side effects in hindsight all manageable, radiotherapy, zoladex, biclutamide and now abiraterone which I have been in for 18 months. My PSA is 0.13, I still work, I have had and will have more great times away, my kids now age 19, 17 and 12 all seem ok and I run. I run lots, I have completed in many ultra marathons and in fact tomorrow am off to Iceland to run a 6 day 250 kilometre race carrying all my own stuff for the week.

Prostate Cancer has no rules, we are all different however I have had two cracking years and as I said it is not over yet.

My lymph nodes were 3.5cm long before chemo and zoladex, they shrank back to normal size (about 0.5cm) after. My onco says that as I was diagnosed with a high PSA it is highly likely that when the cancer gets active again it will be after a fast rise in PSA so with mine having been less than 0.3 for a year then for now what am I worried about?

I write the above to hopefully give you a story to share with your family about how good things can be for a long while. Everyday when we get up we have a choice no matter what is going on out there, be happy and look for the good or focus on the bad. Personally I seem to manage on the good, I do hope that you and your family can do likewise. I am closer to my family now than ever.

Have a great day, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 25 Aug 2017 at 06:54

Hi Mel ,sorry the results were not better .Once the hormones kick in there should be an improvement in the PSA levels ,Garys came down pretty quickly and after chemo have stayed low so hang on to that thought .
Gary was extremely fortunate and had few side effects with the chemo but other members have had a few issues so it is really important that B listens to his body and takes care .
Telling the kids is always differcult we have 4 and luckily they have all taken it well ,the youngest boy (27) works with Gary so at least he can keep an eye on things for me .
Keep strong for each other and keep us updated
Best wishes
Debby

User
Posted 25 Aug 2017 at 22:18

Hi FlyingBlind
Sorry to hear your latest news but please be assured that HT can really help and there are plenty of other treatments to try. My husband was only diagnosed in March so we are fairly early on but he has responded very well to treatment so far. PSA down from over 1000 in March down to 2.7 a couple of weeks ago. He is now halfway through 6 sessions of Chemo and his bone mets were extensive as well. From horrific pain that didn't respond that well to painkillers he managed to come off all painkillers within a few weeks of starting HT. Chemo has not been that bad so far and he has continued working most of the time though he did have a bad reaction with Zoledromic acid (for bone strengthening) which we will talk to Oncologist about next week.. We have even managed a few days holiday with quite a bit of walking.

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User
Posted 11 Jul 2017 at 18:30
DEar Flying Blind

You are experiencing that awful time, awaiting diagnosis, that we all go through.

Once you know what you are dealing with, your medical team will come up with a plan for your husband.

His problem could range from a bad infection to -as you fear - cancer. But you do not know yet for sure.

I'm sorry that I cannot offer any assistance to you at this time. It is the worst part waiting for the results but whatever happens there are people here who are in the same boat and can offer sound advice.

The only way through this is to wait it out.

It's awful - we all know - but we will be thinking about you and be ready to help when we can.

Alison

User
Posted 12 Jul 2017 at 00:16
Oh Flying Blind,

I hear you we have also got youngish children 17 and 12 so i know how that feels. Your OH does have quite a high PSA and generally you would expect mets at that level but not always .

If you look at some people's bios Si Ness for instance he has multiple mets with a low PSA he was around 4.6 at diagnosis ( sorry Si if I got that wrong )

Trevor was 13000 at diagnosis and yes multiple mets , Yorkhull was a lowish PSA with mets if you get a minute take a look at these threads because the one thing that will jump out at you is we are all still here over 4 years later.

I hope this somehow helps you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jul 2017 at 07:40

Hi Flying Blind,
My husband had a PSA over a thousand at diagnosis so please don't worry, It will come down with treatment. This is a very trying time while you wait for all the tests and results. My husband was diagnosed after going to the doctor with severe back pain which didn't react to pain killers. His is in the bones. As soon as treatment started his pain reduced and he was able to come off all his painkillers and last PSA was 12. He is on Hormone Treatment and started Chemo 2 weeks ago.

User
Posted 15 Jul 2017 at 05:45

Thank you so much for reading my post & for your replies. I know that you are all fighting with your OHs against this bloody evil disease so to take time out to write is met with extreme gratitude. Each of you are inspirational and Trevor is clearly either superhuman or 'just' a man with the indomitable love of an amazing woman!
Having seen the urologist yesterday morning I feel we're not that much more informed than the day before. Consultant very matter of fact, telling us that due to his PSA he can tell us that B has PCa & will have mets. He thinks that B's hip pain is going to be cancer in his hip bone. B started a two week course of Casodex today & will have first Prostap injection next Friday (21 July). Now waiting for mpMRI & full body scan, followed by TRUS biopsies. We go away in 10 days for just over a week so OH asked whether we need to cancel that & Doc said something along the lines of "Oh a week or two delay isn't going to make a difference with his cancer, there's no need to rush anything." Now, am I being paranoid, a worry wart, in thinking that means that Doc considers it likely find multiple mets & for B to be T4N1M1, so control not cure? Told that a manner of the MDT will call B with test results but we won't be seeing him until November! Feels a bit like B has been written off, that he's too far down the road to bother with quick treatment or even to do another PSA test.
So I'm still feeling scared & confused.

Thank you so much for reading my post & for your replies. I know that you are all fighting with your OHs against this bloody evil disease so to take time out to write is met with extreme gratitude. Each of you are inspirational and Trevor is clearly superhuman!

Mx

Edited by member 15 Jul 2017 at 05:58  | Reason: Not specified

User
Posted 15 Jul 2017 at 08:04

Originally Posted by: Online Community Member
We go away in 10 days for just over a week so OH asked whether we need to cancel that & Doc said something along the lines of "Oh a week or two delay isn't going to make a difference with his cancer, there's no need to rush anything." Now, am I being paranoid, a worry wart, in thinking that means that Doc considers it likely find multiple mets & for B to be T4N1M1, so control not cure? Told that a manner of the MDT will call B with test results but we won't be seeing him until November! Feels a bit like B has been written off, that he's too far down the road to bother with quick treatment or even to do another PSA test. 

No, no, no, you're not being written off. It does look likely that OH will be diagnosed with advanced prostate cancer .... just like me. Have a look at my profile and see how often PSA was tested in my first 15 months, it was every 3 months and I saw my Onco shortly after each of those tests. So just like what they are proposing to do for your OH.

Regarding the holiday. When I was first diagnosed I thought I'd be dead by Christmas. I wasn't. Even with advanced prostate cancer it doesn't progress that quickly. Having your holiday will not make one jot of difference to any progression. With any luck Prostap (very similar to the Zoladex I have had) will protect OH for a long time.

Regarding the mets, if there's just one, it's still advanced prostate cancer. So whether there is 1, 2, 3 doesn't make much difference .... I had 3 and I'm still breathing.

I hope this will help you to relax and enjoy your holiday.

User
Posted 15 Jul 2017 at 10:21

Hi I feel your anguish we had a similar road with Gary , PSA was a lot lower at 23 but was warned it didn't look good .as for the biopsy Gary was advised to wait until after our Amazon holiday because of infection and the location of the holiday .Every thing was put into place for when we returned .unfortunatly it was Gleason 4/5 and Gary then had to have CT /MRI and X-rays to determine spread .Like your OH Gary had pains in hips etc but he also suffers from arthritis .Being over the Xmas period the onco app was held off till early January for results which wasn't a great Xmas but stayed positive for our family .
Garys had spread to lymph nodes but no bone spread ,so no point in operating but was put straight onto hormones and offered 6 sessions of chemo which scared us but luckily Gary had no problems at all still managing to work everyday .Quite quickly the PSA dropped to 0.01 undetectable and has stayed there for well over a year .gary is on the stampede trial arm j which involves a couple of extra hormone drugs and this seems to be holding things back ,the main side effect being fatigue ,and being only 57 he has no intention of giving up work .
Things are different now but we now have 2 beautiful grandsons and try to make everyday count ,even booking a couple of cruises to make sure Gary relaxes .
Thoughts are with you
Best wishes
Debby

User
Posted 25 Aug 2017 at 01:53

Thank you both David & Debby. We've now had the full results & I've put them on my updated profile. Please excuse me not repeating them all on here, but T3b N1 M1 with widespread & numerous bone mets, Gleason 4+5 so 9 throughout 'v large tumours'. Referral to Onco to talk about chemo & continuing HT with next round due mid Oct. Both reeling (hence the 2.45am typing!) but stoic. Kids handling it well.
Re hols, yes, we had a fab time. B's energy levels had started to rise quickly after first Prostap injection & the pain in his hip had & continues to be a couple of times a week but managed on single dose ibuprofen. We can only assume that this is because the HT is doing the job well & that the PCa is being starved.
I've read both of your profiles & postings & can only thank you for all of the info you've shared & thank you for your care.
Warmest regards
Mel x

User
Posted 25 Aug 2017 at 06:44
Hi Mel. I am sorry to read where your husband and your family are.

I am 52, was diagnosed 3 years ago, PSA 324, T4 N1M1a, spread to lymphs extensively but somehow not bones.

The first couple of months of understanding my prognosis were awful as I could not get my head round it however from then on I have moved on mentally. Life is for living, never waste a day, no regrets and all that.

I had early chemo, side effects in hindsight all manageable, radiotherapy, zoladex, biclutamide and now abiraterone which I have been in for 18 months. My PSA is 0.13, I still work, I have had and will have more great times away, my kids now age 19, 17 and 12 all seem ok and I run. I run lots, I have completed in many ultra marathons and in fact tomorrow am off to Iceland to run a 6 day 250 kilometre race carrying all my own stuff for the week.

Prostate Cancer has no rules, we are all different however I have had two cracking years and as I said it is not over yet.

My lymph nodes were 3.5cm long before chemo and zoladex, they shrank back to normal size (about 0.5cm) after. My onco says that as I was diagnosed with a high PSA it is highly likely that when the cancer gets active again it will be after a fast rise in PSA so with mine having been less than 0.3 for a year then for now what am I worried about?

I write the above to hopefully give you a story to share with your family about how good things can be for a long while. Everyday when we get up we have a choice no matter what is going on out there, be happy and look for the good or focus on the bad. Personally I seem to manage on the good, I do hope that you and your family can do likewise. I am closer to my family now than ever.

Have a great day, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 25 Aug 2017 at 06:54

Hi Mel ,sorry the results were not better .Once the hormones kick in there should be an improvement in the PSA levels ,Garys came down pretty quickly and after chemo have stayed low so hang on to that thought .
Gary was extremely fortunate and had few side effects with the chemo but other members have had a few issues so it is really important that B listens to his body and takes care .
Telling the kids is always differcult we have 4 and luckily they have all taken it well ,the youngest boy (27) works with Gary so at least he can keep an eye on things for me .
Keep strong for each other and keep us updated
Best wishes
Debby

User
Posted 25 Aug 2017 at 09:58

Hi Mel

Sorry to read your diagnosis, mine was much the same 5 years ago with the pelvis about to break due to the tumors, click on the link and my scan pictures are there on one of the posts, http://community.prostatecanceruk.org/posts/t9698-Simon-Story-Chapter-2#post117233

At the time of diagnosis i had 8 year old twins and never thought i would see them go to secondary school but 5 years on still working full time still enjoying life, if i could offer any advice it would be;

Are they going to offer a short course of RT to the humorous to prevent fracture

Are they going to offer Denosumab injections this is a bone strengthener (i really rate this treatment)

Pleased that they are talking of early chemo i had this 5 years ago and if your husbands is OK for chemo push for it, and by early chemo the key word is EARLY

I have said many times before we spend more time choosing a car or a house than a Oncologist, make sure he specializes in Metastatic prostate cancer, if you are not happy ask for a second opinion.

There are lots of very knowledgeable people on here and we all remember those early days so no question is a silly question

Best wishes

Si  

Don't deny the diagnosis; try to defy the verdict
User
Posted 25 Aug 2017 at 22:18

Hi FlyingBlind
Sorry to hear your latest news but please be assured that HT can really help and there are plenty of other treatments to try. My husband was only diagnosed in March so we are fairly early on but he has responded very well to treatment so far. PSA down from over 1000 in March down to 2.7 a couple of weeks ago. He is now halfway through 6 sessions of Chemo and his bone mets were extensive as well. From horrific pain that didn't respond that well to painkillers he managed to come off all painkillers within a few weeks of starting HT. Chemo has not been that bad so far and he has continued working most of the time though he did have a bad reaction with Zoledromic acid (for bone strengthening) which we will talk to Oncologist about next week.. We have even managed a few days holiday with quite a bit of walking.

User
Posted 26 Aug 2017 at 00:14
Life can be strange.

After being diagnosed, I was on my way to a hospital appointment, when I met my former Boss on the bus.

I was feeling down, and had not yet went public with my illness.

He had just retired and was heading with his wife for a bar lunch.

He was so excited with the prospect of his retirement,and I was so low.

Six weeks later, I attended this man's funeral.

He took an infection and died in hospital.

This man had not a care in the world, and he was gone.

Sometimes people with life limiting illnesses, have more time in front of them than others, who have apparentry none.

Isn't life strange ?

 
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