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A New Chapter

User
Posted 10 Feb 2020 at 01:37

Hi, 

I have my PSA checked every two months and my oncologist told me that she expected my results to continue to rise as long as I was on my present treatment (Zoladex).  

When I was tested in November I was pleasantly surprised that my figure had fallen to 2.50 from 3.20 in the previous test (in September).

My latest PSA results, two weeks ago showed a rise to 4.10, quite a jump from 2.50, two months before. 

I been trying to figure out why the November result would have been so much lower than expected and what may have caused it. The rate of rise has been fairly consistent in the two years since restarting treatment. 

I think I may have discovered why. 

A week before I took the November test I'd spent the night in hospital because my blood oxygen level had fallen to 84% causing me to be very breathless.  After 6 hours on oxygen I was sent home with a 5 day supply of steroid tablets to take.

It was only the other day when I was reading possible treatments for advanced prostate cancer that it mentioned that steroids are sometimes given to slow down the progression of cancer. 

Could this be why the lower result occurred?  If so, should I be on steroids now rather than having than treatment at a later stage as it seems to have worked better than Zoladex alone?

In reality, I would be very reluctant to take steroids on a regular basis because of the side effects that I know can occur. My wife has been prescribed them for another condition and she is now diabetic as a result. 

I'd be interested to hear if anyone has any thoughts on my idea that it may have been the steroids that caused the unexpected fall in PSA.

Thanks. 

Steve 

Edited by member 16 May 2020 at 02:23  | Reason: Not specified

User
Posted 10 Feb 2020 at 08:46

Steve,

I don't know if the steroids have anything to do with your psa score. What I will say though is even after my recent change in treatment due to the PC spreading. I am still on steroids, even though I have stopped Abiraterone and gone onto chemo. I must ask my onco why he has continued even though the abi has failed.  The benefits in the past have outwayed the side effects for me anyway so maybe they would in your case ?

Chris.

User
Posted 10 Feb 2020 at 09:55

Steve,

Steroids do seem to have a positive effect in keeping PCa at bay...........

Steroids can be used to try to shrink the tumour and stop it growing. The most effective steroid treatment is dexamethasone (https://www.nhs.uk/conditions/prostate-cancer/treatment/)

So certainly worth raising it with your consultant.

Best

Flexi

User
Posted 23 Mar 2020 at 02:05

Hi, 

Over the last few months my wife and I have had quite a few changes in our lives.  The biggest probably, moving to a bungalow after living at our old house for 36 years.  That was our family home but with none of our four children still living at home, it seemed the right time to downsize.  

The place we moved to needed complete modernisation including a new kitchen and bathroom, which all takes time.  We've only been there just over two months but my wife is unhappy that we haven't managed to get more done.

The new kitchen is due to be fitted starting this week but now she's convinced that it won't happen because of the coronavirus.

This is the problem.  She's always been a "glass half empty" type of person who believes that everyone else is having a wonderful life and the bad things only happen to us, not anyone else.

Now the coronavirus is here, she's convinced that we are bound to be the ones that will die from it because of our health conditions. 

I have always tried to be positive in my outlook in life but I'm finding it harder to live with a person who sees doom and gloom around every corner. 

We are self isolating, even though we have no symptoms, but it's becoming difficult even after two or three days.

Is anyone else having these problems. 

Steve 

User
Posted 23 Mar 2020 at 07:34
Had 2 new velux fitted on Friday, I was convinced they wouldn't show up but they did. Bigger issue - they didn't bring enough slates, but my wondert neighbour sorted me some out and all was well!
User
Posted 23 Mar 2020 at 09:31

Steve,

Tell be about it!  Trying to be reassuring I'm finding is in itself can be pretty draining too.  It's important to look after your own mental health. For me its pottering in the garden and listening to repeats of Gardener's Question Time! (and not thinking that we're supposed to be moving house in two weeks!).

Flexi

 

User
Posted 23 Mar 2020 at 14:40

All ok this in but being tech I’m kinda used to a computer screen. It’s like an extended lock down since surgery as I went offline 10 days before surgery. Then took it easy post RRAP albeit it a weekly social and daily walks. Now messing about with tech/tv plus a bit of Pilates and some afternoon sun in the garden. After this 12 weeks will have done about 6 months in semi lockdown. I’m ready for MarsOne πŸ€–πŸ€ͺπŸ€“

User
Posted 23 Mar 2020 at 15:14

 Steve, I do feel for you, living with someone who finds it difficult to find positives in every day living can be hard, especially at times like this. Moving house can be stressful, and doing house alterations hard going. Whilst David was having his treatments I was project managing our house extension, with a builder who turned out to be rather useless and quite dim.πŸ€“we lived in brick dust and chaos for nearly a year. I was cutting veg one lunch time and the said builder’s boys had gone home as he’d not paid them.... I had paid him thou! I chased after him with large kitchen knife in hand, forgetting to put it down, he was horrified, scared and somewhat more compliant after. Though still a cr*p builder. 😊

Thankfully like you I’m quite positive, and hopefully resilient emotionally and physically. David can get a bit on the doom and gloom side, but he manages this with my help, and sometimes he’s right to be fed up.

I hope you manage to get the kitchen and bathroom completed, but not having it done might prevent you both from being exposed to this virus. 

I do also feel for your wife, I’m sure she feels vulnerable, this might add to her glass half empty feeling. Remind her when the work is being done, cutting veggies and getting frustrated with your worker can have results, but to

 

put the knife down first. This is not a post  about PCa, but I hope it gives you a smile.πŸ—‘πŸ—‘Leila 

 

scare the living daylights out of them. 

 

 

 

Edited by member 23 Mar 2020 at 17:20  | Reason: Not specified

User
Posted 23 Apr 2020 at 03:33

Hi, 

Thanks for all the replies. 

Just an update.  I had a PSA test on Tuesday and have just been texted the results. 

My latest figure is 4.30, up from 4.10 in January. The one before that in November was 2.50.

This seems like a cause for celebration but because this was done at a gp's surgery which isn't my normal one, I wondering if the sample was sent to a different lab (maybe due to the situation with coronavirus).  I normally have all my tests done by my local hospital and would have preferred to have done that on this occasion but I was reluctant to risk it.

It's silly I know but I would have been happier knowing that my usual lab had provided the results. 

Steve 

User
Posted 23 Apr 2020 at 07:26

I am a bit skeptical that different labs will be wildly different.

Your big leap before was likely due to having taken a short dose of steroids, if I recall, which probably suppressed that 2.50 reading from what it should have been.

I don't think you should hold back on the celebration Steve...

 

User
Posted 23 Apr 2020 at 13:41

A modest rise Steve, here’s hoping the labs aren’t too different.

A wee celebration seems ok?

 

Ido4

User
Posted 23 Apr 2020 at 17:50

Thanks. 

I had a couple of cans of lager anyway. 

I'll have a couple more this evening if I can get away with it.

Steve 

User
Posted 23 Apr 2020 at 21:59
Good to see you're going well Steve. Enjoy your beer, my good lady and I have just shared a bottle of wine following the NHS and carer applause.

Take care.

User
Posted 23 Apr 2020 at 23:53
A different lab is unlikely to make a dramatic difference to the result - the difference between the Leeds lab and Harrogate lab was only 0.2 when we tested it. Have you asked the GP practice which lab they used? Seems a simple way to put your mind at rest.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Apr 2020 at 17:30

Enjoy the beer. I’ve cracked open some wine. I’m sure the like of Bollinge and others will be on the sauce also.

i found My PSAs pre diagnosis fluctuated quite a bit between 2015 to 2018 (Up and down between 3.9-4.4). But there was a subtle trend upwards although marginal. Then a jump from ~4.5 to 5.6 in July 2019. Now all <0.01. Next test May πŸ₯΄

User
Posted 24 Apr 2020 at 17:47

Originally Posted by: Online Community Member
i found My PSAs pre diagnosis fluctuated quite a bit between 2015 to 2018 (Up and down between 3.9-4.4).

 

Steve is not pre-diagnosis - he has fallen into the recurrence camp. 

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

User
Posted 24 Apr 2020 at 18:45

Hi Steve,  I had a similar experience with a GP test and they couldn't say why.

My psa is <0.05 at the hospital.  The GP called me in for a health check and I asked if they could tick psa test.   They said I'd need to be under a urologist and so kindly agreed, I thought.

At the screening they said it was 0.08 so below the 4 it could be at my age the GP's notes said.  Oh for blanket notes! 

The 0.08 worried me as it was a 60% rise in 4 months.  The lady doing the health screen said she knew nothing about it and I'd have to see the urologist.

I know the GP doesn't use the < symbol.

Anyway the Macmillan Nurse at Preston said take a test there.  Luckily it came back <0.05.  She said there's often a difference but my feeling was that in a health screening they must have set the minimum higher or it went to another lab or a typo.

Whether yours is anything like that I don't know but I don't want to go the GP again. All the best Peter

User
Posted 25 Apr 2020 at 03:09
Steve, you have had so much to contend with and I would not be concerned about this latest very small increase. PSA does fluctuate and unless there is a substantial rise, generally works better over time showing an overall trend.
Barry
User
Posted 28 Apr 2020 at 01:20

Hi,

A "21st." is usually a day of great celebration.  It used to be a birthday that marked the day when we officially became an adult, with our whole lives ahead of us.  But today, for me, my 21st. means something very different. 

Later this morning, I will lay back and receive my 21st. Zoladex implant into my stomach.  Never really painful, sometimes a little uncomfortable, it will be given to try and slow the growth of a cancer that for me, will end my life.  

So it will not be a time of dreams and excitement for the life that is to come, just another £235 cost to the hard pressed NHS,  £4935 in total so far, for a treatment that is now failing.

It's hard not to feel guilty, when you consider there are others far more deserving.  

Steve 

 

 

Edited by member 28 Apr 2020 at 08:52  | Reason: Not specified

User
Posted 28 Apr 2020 at 14:45

Hi Steve,

just read your latest post and then re-read your profile.  Gosh you have been through some very difficult times over the last six years!

What really stood out for me were your comments about the birth of your four Grandsons over that time.  What pleasure they must have brought to your lives and what a wonderful Grandad I’m sure you are.  You shouldn’t feel guilty for one moment as you are as deserving as anyone for any treatment available that will enable you to keep looking forward and being there for those you love and who love you.

These are very unusual times that we are living in, to say the least, and depression will try to get the better of us, but I’m sure you will find the strength, as you have done before to keep going and looking forward to the time when we can all give big hugs to the ones we treasure.

Sending you and your wife a big hug and best wishes,

Ange

User
Posted 28 Apr 2020 at 16:12
Steve you've been through the mill over the years. Whilst its admirable to think of others stop doing the cost of treatment maths. You would have contributed to the NHS funds to help others. Now its your turn to let others help you. Nothing whatsoever to feel guilty about.

Be as well as you can

Ray

User
Posted 29 Apr 2020 at 11:49

I need urgent help and this website doesnt work properly. Can you pm me so you can get published what I need to say. If not my email is consumer.cashin@yahoo.co.uk

User
Posted 14 May 2020 at 03:50

Hi, 

Just noticed that yesterday (the 13th) was the day, six years ago, that I had my very first PSA test.

When the results came back showing my PSA was 48.85, my GP told me that it was "slightly raised".

So began my journey... 

Steve 

User
Posted 14 May 2020 at 08:24

HI Steve,

What a journey.

When my PSA came back as 57, my GP immediately said,
     "You've got prostate cancer".
He was right of course, but I hadn't even been referred yet. Now that I know him much better (and he has been fantastic throughout), I know his father had prostate cancer, as did the GP heading the practice, so he will have known much more about it than most GPs.

I must ask him what his threshold level is for telling someone on the spot they have prostate cancer.

User
Posted 14 May 2020 at 18:46

What a journey Steve, glad you’re still here.

 

Ido4

User
Posted 15 May 2020 at 11:04

Hi Steve,

It’s been a bumpy road you’ve travelled on but we’re pleased you’re still with us

Arthur

User
Posted 22 May 2020 at 11:34
Keep on keeping on!!!!!!!!
User
Posted 04 Jun 2020 at 00:42

Hi, 

Even though I feel life has sometimes got it in for me at times, when a really nice day comes along, where everything has gone just right, it really does raise your spirits.

Tuesday was one such day.  I took my wife for a drive in the beautiful Berkshire countryside, her first trip out in 10 weeks (she's having to shield) and stopped to do some pictures when we found an incredible field of poppies. She loved it and the fresh air did her a power of good.

When we arrived home, I had a phone call from my surgery, giving me the results from a Diabetes test I had last week.  I've been classed as Pre-diabetic for several years and in view of my love of chocolate and all things sweet, especially when I feeling miserable and I'm in a "what the hell, I going to die from my cancer anyway" mood, I was convinced they would tell me I was now Diabetic.  To my surprise, they told me that my figures had come down almost to the point where I was no longer classed as being pre-diabetic anymore.  Wow such a relief.

Then, half an hour later, I had my Oncology consultation (via telephone) where she told me that my recent PSA test came back as 3.40, a fall from my last test where it was 4.30!  I was so pleased that I celebrated with a can (or two) of lager in the evening.

A perfect day!

Steve 

User
Posted 04 Jun 2020 at 01:22

Great Post Steve,

My other half has also spent a lot of time indoors lately and it is nice when we get out. I even enjoyed the rain today, the weather has been beautiful for so long, but a downpour was a surprisingly pleasant change. It's important to enjoy the small victories. 

Dave

User
Posted 04 Jun 2020 at 07:24
Nice one!!
User
Posted 04 Jun 2020 at 07:42

Steve

Great news on both scores, and great for you both to be getting out.

Thanks Chris and Dawn

User
Posted 04 Jun 2020 at 07:54

Brilliant news Steve, after some of what you've been through.

User
Posted 04 Jun 2020 at 07:55

Great news all round - and a deservedly celebration!

Flexi

User
Posted 04 Jun 2020 at 09:12

Great news Steve, good reason to celebrate!

Arthur

User
Posted 04 Jun 2020 at 09:28

Brilliant Steve. Great results. 

Ido4

User
Posted 04 Jun 2020 at 19:07
Fabulous news Steve - so pleased for you.
User
Posted 04 Jun 2020 at 19:15
Great news Steve.

Always good have improving results especially after a lovely day out.

Stay safe

Paul

User
Posted 04 Jun 2020 at 20:51

So pleased for you Steve, it’s great to hear you sound so upbeat x

User
Posted 05 Jun 2020 at 09:44

Hi,

Thank you everyone, for your kind remarks.

It's been making me wonder why, in the space of only 36 days, my PSA would fall from 4.30 to 3.40, just at a time when I was feeling low and just needed something to make me feel happy again.

I couldn't think of anything I've done differently to cause this to happen. Then, late last night, a thought occurred to me.  The PSA test I had last week, was done on May 27th, the anniversary of the day my Dad tragically died from a heart attack when I was 18 years old.  Then I suddenly realised, that was 47 years ago.  A shiver when down my spine.  A few days before he died, he had just celebrated his 47th birthday!

I always remember, in the years following his death, I would occasionally have a dream where I would meet him and let him know how things were going and what I'd been doing.  It was always a great comfort to me.

I wonder now whether this recent result was my Dad's way of helping me when I needed it most.

Steve

 

 

User
Posted 05 Jun 2020 at 10:29
Remember PSA tests can be unreliable & inconsistant, it is why they are not used as screening tests, like the Ladies have Cervix tests.

See them as a rough or approx guide, is my advice..

User
Posted 05 Jun 2020 at 12:55

Hi Steve,

Such a sad time in your life to lose your Dad when he was only 47 and you were 18.  I, like you, also believe our treasured loved ones give us a sign that they are still there for us.

i shall go on believing and I’m so pleased you had a happier day.

Angex

User
Posted 05 Jun 2020 at 16:25
Just caught up with this Steve, great news about the PSA drop, long may it continue.πŸ‘
User
Posted 06 Jun 2020 at 08:46

Fantastic to read that the planets aligned in your favour this time. Capture the memory of that day and pull it out whenever you have a sad day to remind yourself that 5 star days can and do happen for you . Take care.

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 29 Jul 2020 at 01:09

Hi, 

After the wonderful PSA result I had at the end of May:

              3.40, a fall from 4.30,

I received a phone call this afternoon from my GP to tell me that my latest test has come back showing an increase to 5.50, my highest figure since I was diagnosed six years ago.

I'm so disappointed and a little bit concerned.

Steve 

Edited by member 29 Jul 2020 at 01:26  | Reason: Not specified

User
Posted 29 Jul 2020 at 08:04
Hi Steve

sorry to hear the news about your PSA , hopefuly it is just a blip, will keep my fingers crossed for you.

regards Barbara x

User
Posted 29 Jul 2020 at 09:27

Sorry to see this Steve. What a disappointment after your last reading.

Ido4

User
Posted 29 Jul 2020 at 11:34

Sorry to hear this Steve, try to stay positive 

Arthur

User
Posted 29 Jul 2020 at 16:00

Steve

Sorry to see this, have you been offered any scans to see where the cancer is ? I was reading a post elsewhere and the guy had already  undergone RP and RT a few years ago. He then had some scans and was having some suspect lymph nodes removed. His urologist did describe it as unusual.

Take care.

Thanks Chris and Dawn

User
Posted 29 Jul 2020 at 23:06

Wishing you well, Steve

ulsterman 

User
Posted 29 Jul 2020 at 23:23
Hi Steve, if you discount the last PSA test, a rise from 4.3 to 5.5 is more or less exactly in line with your previous rises and should be no surprise. If anything, it seems more likely that the last test was some kind of quirk or error - you did say at the time thst the drop was unexpected.

You could ask the onco or specialist nurse why they are not taking more interest in your case - they don't seem to have even checked out whether the HT isn't working properly or you are now castrate resistant.

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

 
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