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A New Chapter

User
Posted 30 Jul 2020 at 00:52

HI,

Thank you for your kind messages of support.

Lyn, to be honest I was thinking the same thing.  Ignoring the previous test result, the rise is on the same trend as I've been on since restarting HT two years ago.  My oncologist has told me that generally, she expects my PSA to increase rather than go down again as long as I continue on Zoladex alone. 

I feel frustrated as I've constantly asked if I can have a PETScan to try and identify where my cancer has reoccurred.  I know it may not help me survive any longer but if it means that there's a possibility of a more targeted treatment that would give me more time, I feel it would help.  I just feel anxious that delaying things may reduce my options. My oncologist's answer is that she wants to wait until my PSA reaches double figures before sending me for a PETScan.

On Tuesday, amazingly, I am having a bone scan (the only scan I've had in over two years).  This has been approved because I've had very uncomfortable pain in my left shoulder for over four months now.  I finally managed to be referred for physiotherapy to try and sort it out but now the physio wants to use ultrasound treatment on it, so, aware of the dangers with giving ultrasound to an area that may be affected by cancer, I contacted oncology to check.  They came back to me and said a bone scan was the best option so at least that might mean that the physio treatment might be able to continue.  I just need to sort out the pain, it's getting me down. 

They confirmed the scan before the PSA results came through so I wonder if they would have considered giving me the bone scan anyway.  Somehow, I don't think they would have bothered. 

I just need to feel that someone is doing something.

Steve 

User
Posted 30 Jul 2020 at 07:17

Sorry about the PSA rise again Steve, hopefully the scan will not show anything and it will be a case of them trying to get the PSA down again. Take care mate.

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 30 Jul 2020 at 07:54

All the best for your scan next week Steve. Will be thinking of you.

Angex 

User
Posted 30 Jul 2020 at 09:10

Hi Steve,

All the very best, I have followed your posts for many years.

Be very kind to yourself, you more than deserve it. As Lyn alludes to.

  Maybe time to request a 'review'  Stoic  comes to mind.. 

Are you still having to work as well ?

 

Best wishes Gordon

 

User
Posted 31 Jul 2020 at 01:46

Thanks. 

Gordon, Yes I'm still trying to work but with the lock down it hasn't been easy. 

There isn't much work around for photographers when all the usual events are cancelled. The only thing that I've be lucky to do is all the Reading FC home games.

I feel a little guilty to be one of the limited number of people allowed into the games, especially as I'm not a Reading supporter.  I originally grew up in Nottinghamshire so I'm a lifelong Forest supporter.

I hope to continue to work and never retire.  Photography is my life, and has been for over 47 years since I left school.  My health may mean that I may not be able to achieve that but at least I can try.

All the Best, everyone, 

Steve 

User
Posted 31 Jul 2020 at 09:17
Maybe nag them for a PSMA scan instead of a Bone scan?

User
Posted 31 Jul 2020 at 09:55
Best of luck for next week.

Paul

User
Posted 31 Jul 2020 at 10:59

Francij1,

I've tried in the past and without much success.  They want my PSA to be closer to double figures. 

It makes me feel really frustrated because when I was originally diagnosed, my PSA was 48.85. I had been aware for at least eighteen months, that something wasn't quite right. I'd been having peeing problems but I thought it was something that happened as you grew older.  I'd never had any health problems and cancer was definitely not on my radar.  As it turned out, not going was the biggest mistake of my life as my cancer had already started to break out of the prostate.  I had ruined my chance of a cure by leaving it too late, thinking that I was invincible.  I never want to make the same mistake again.

I feel that the earlier I can find out where the cancer is, if there's the slightest chance of any treatment to that area that might delay the progression, at least I'm not leaving it too late again.

Being told to wait until the PSA reaches 10 before having a PETScan makes me anxious that I could repeat the mistake I made before: Leaving too late.

Steve 

User
Posted 31 Jul 2020 at 11:43

Steve,

Have you considered sounding out one of the private clinics in London, perhaps just only for an initial consultation? Might be helpful / worth the expense?

Flexi

User
Posted 31 Jul 2020 at 13:10

Hi Flexi, 

With the severe financial effects of lockdown, we've had no income since mid March, it has hit us hard.  Not sure if I could do that at the moment. 

If they did a PETScan and did find something, I suppose there might not be anything they could do but at least I'd know where it is.

Steve 

Edited by member 31 Jul 2020 at 13:13  | Reason: Not specified

User
Posted 31 Jul 2020 at 20:23
Have you thought of nature photography as an alternative?
User
Posted 31 Jul 2020 at 20:52

Cuddly animals look cute, but they don't have much money. Weddings are good for money but they aren't happening.

You might be able to ask a squirrel if he'll share his nuts with you. In exchange for a family portrait. Lol

Dave

User
Posted 31 Jul 2020 at 20:54
Hi Steve , hoping the best for you. Sorry about work. I’ve been relatively “ lucky “ as an infant school caretaker , but with a quarter of the kids came ten times the work with all the Covid changes.

I guess now you are resigned to systemic treatment for however long , they won’t do a PET scan for the reasons you say. What would they do with the results. ??

Just had scans last Monday bone and CT and psa over 500 now. Bloods ok. They won’t give me a PET as they know I’m against systemic treatment for the sake of it. I only have 4 mets but they abjectly refuse to try targeted RT and just want to castrate me instead. So we are at loggerheads. My normal 4 hour bone scan lasted 6 hours with all the extra pictures they needed. I nearly puked when I clearly saw the two bright hot spots on my spine. They took extra of my ribs also. So looks like the s**t has hit the fan. Take care

If life gives you lemons , then make lemonade

User
Posted 31 Jul 2020 at 20:54
Not quite what I had in mind :)

I meant for magazines and websites.

User
Posted 02 Aug 2020 at 22:59

Hi Steve,

Thanks for update, and keep enjoying the photography, mines just a hobby, circa 55 years.  Also back then a Cambridge Utd supporter, so saw County and not Forest.   In fact I don't remember ever watching Forest.  

Hopefully more business for you soon.   

Best wishes Gordon

User
Posted 03 Aug 2020 at 22:05

Hi, 

The Moment of Truth.  Bone Scan tomorrow (Tuesday).

Two ways it can go. 

If they find it's clear, I can have the ultrasound treatment on my shoulder to help relieve the pain I've been suffering for several months. 

If they detect a spread of my cancer, I'm in deep sh*t.

I now feel nervous. 

Steve 

User
Posted 03 Aug 2020 at 22:28

Best of luck with the scan Steve. I guess results will be a week or two after the scan though. 

Dave

User
Posted 03 Aug 2020 at 23:04

I feel nervous for you too Steve.  Good luck for your bone scan tomorrow, hope and pray it comes back clear.

Ange x

User
Posted 03 Aug 2020 at 23:04

Steve

Hope the scan goes okay. 

Thanks Chris and Dawn

User
Posted 05 Aug 2020 at 17:14

Hi, 

I had my Bone Scan yesterday, seemed to go well.

Afterwards, I drank loads of fluids, as instructed to do to clear the radioactive tracer out my system, but found it very difficult to pee for the rest of the day.

In recent weeks, my flow hasn't been brilliant but was surprised about how restricted it was yesterday.  I just wondered where nearly 4 litres of water went!

Has anyone else had problems like this?

My worst fear is that it might indicate that the cancer is growing in my prostate again, restricting the flow, especially in view of my recent PSA increase to 5.50.

Steve 

Edited by member 05 Aug 2020 at 17:42  | Reason: Not specified

User
Posted 05 Aug 2020 at 22:38

Hi Steve,

I had similar situation with flow, it was painful at times with very little urine coming out and it took a while as well.

I spoke a nurse when I had my 3 monthly injection and it turned out that as I had had diarrhea I was dehydrated, once I ‘topped up’ with water it was ok.

I spoke to my oncologist about it and she reassured me that as I was having Decapeptyl injections my prostate wasn’t enlarging and stopping the flow.

I’m not saying it’s the same for you but it might be something worth considering.

Best wishes,

Arthur

User
Posted 06 Aug 2020 at 07:05

Originally Posted by: Online Community Member

Afterwards, I drank loads of fluids, as instructed to do to clear the radioactive tracer out my system, but found it very difficult to pee for the rest of the day.

In recent weeks, my flow hasn't been brilliant but was surprised about how restricted it was yesterday.  I just wondered where nearly 4 litres of water went!

Has anyone else had problems like this?

I can't speak to your particular situation as I've not had a bone scan, but a couple of urinary tips might be of use.

I've always found stress to be related to urination. For example I used to find it very difficult to pee in a crowded, noisy nightclub where the urinals are close together. "Performance anxiety". Also after an argument or stressful situation it was hard to start urination. I wonder if the stress of your scan has messed with your system a bit?

After my biopsy, when my prostate seemed to swell and block my flow quite badly (I went a full night with a full bladder and unable to pee - that was not fun) I discovered that sitting down, leaning forward and slowly exhaling a deep breath was helpful in being able to urinate . Whistling or singing is also good. I think the diaphragm moving downwards exerts a little extra pressure which can be just enough to get you started and keep it going.

User
Posted 11 Aug 2020 at 23:02

Hi, 

Starting to feel very, very anxious now,  waiting for my latest Bone Scan results.  I was told they would probably be through fairly quickly as not too many scans are being done at the moment. 

The unbelievable hot weather doesn't help.  Hot and irritated.  

If the scan was negative you would think they would just let me know with a quick phone call so I could continue my physio treatment so my ultrasound treatment on my shoulder could start. 

The constant pain is getting me down and I certainly feel I shouldn't be taking 56 paracetamol tablets a week to try and control it. 

Another uncomfortable night's sleep ahead. 

Steve 

 

Edited by member 11 Aug 2020 at 23:05  | Reason: Not specified

User
Posted 11 Aug 2020 at 23:37

Steve

Easy to say harder to do , stay positive.

Thanks Chris & Dawn

User
Posted 12 Aug 2020 at 08:45

I hope you get results soon Steve. Waiting on results is very difficult.

Ido4

User
Posted 12 Aug 2020 at 11:08

Hi Steve, hope you’re feeling less anxious today.  I think night time is always worse as not many distractions, especially when you’re in pain and it’s so hot.  Fingers crossed you will receive your results soon and be able to move forward.

Angex 

User
Posted 14 Aug 2020 at 02:52

Hi, 

Finally found out the results of my Bone Scan yesterday (Thursday):

Great News:  NO SIGN OF CANCER SPREAD....but there was concern over what was happening with my left shoulder joint.  I was booked in for an x-ray, which I had straight away at the hospital. Hopefully this will show what is happening so I can have the best course of treatment to finally sort it out. 

I'm so relieved after all the stress I suffered this week, I was beginning to feel very anxious. 

Hoping for a more relaxed few days. 

Steve 

 

User
Posted 14 Aug 2020 at 02:58
Hi ,as you can see by the time of my posting I’m a night house walker ( not worker !!) great news .

It’s a horrible feeling being anxious as most men will know on here just before any results .im currently worrying about Gary and my dad who has throat cancer .

Best of luck for you next set of results .

Debby

User
Posted 14 Aug 2020 at 07:27

Steve 

Great news, now relax.

Thanks Chris & Dawn

User
Posted 14 Aug 2020 at 09:14
Relax and have a great weekend now Steve

Bri

User
Posted 14 Aug 2020 at 09:40

That’s fantastic news Steve. You will be so relieved.

 

Ido4

User
Posted 14 Aug 2020 at 11:02

That is great news Steve.  Hope you can relax for a while now and enjoy your weekend.

Ange

User
Posted 14 Aug 2020 at 11:05
Great news!

Will it be champagne or whisky?

User
Posted 14 Aug 2020 at 11:38

Originally Posted by: Online Community Member
Great News:  NO SIGN OF CANCER SPREAD....

Excellent! You must be so relieved. 😃

User
Posted 14 Aug 2020 at 12:17

Brilliant news Steve!

User
Posted 14 Aug 2020 at 12:31
Super news Steve, really chuffed for you.

How are things in the new home?

User
Posted 14 Aug 2020 at 16:25
Good news. As they say worrying changes nothing. Just got my appt today and it’s 2 week’s away. I’m simply not worrying. All worried out lol. But keen to hear what treatment is on the cards or needed or whether it’s worth it

If life gives you lemons , then make lemonade

User
Posted 14 Aug 2020 at 23:18
Good result Seve, now let's hope the shoulder problem is minor and can be easily resolved.
Barry
User
Posted 16 Aug 2020 at 17:37
Great news Steve. Hopefully the shoulder issue is nowt to fret about.

Take care and enjoy your days.

How goes the photography?

Paul

User
Posted 17 Aug 2020 at 09:55

Thank you everyone for your messages and your good wishes.

It was a huge relief to have the good news about my bone scan.  I was growing more anxious by the day while I was waiting.  It did take some phone calls, to the right people, to finally find out the results.  Apparently, they knew the results earlier but they had to wait to see my oncologist before they could ring me, in spite of the clear scan. Thank goodness she wasn't on holiday. 

The reality is now that the shoulder pain is still as bad as it was and I can't restart any treatment for it until the x-ray results come through!

Steve 

 

User
Posted 07 Oct 2020 at 00:33

Hi, 

Just had a phone appointment with my oncologist today and found out that my PSA has now gone up to 6.00. 

I've been advised to add Bicalutamide to the Zoladex I'm already on.

Not looking forward to the possibility of more side effects. 

Not a good day. 

Steve 

User
Posted 07 Oct 2020 at 07:31
Hi Steve,

sorry to hear your PSA has gon up again and hope the bicalutamide works for you and with very few side effects.

regards Barbara x

User
Posted 07 Oct 2020 at 08:31

Originally Posted by: Online Community Member

Thank you everyone for your messages and your good wishes.

It was a huge relief to have the good news about my bone scan.  I was growing more anxious by the day while I was waiting.  It did take some phone calls, to the right people, to finally find out the results.  Apparently, they knew the results earlier but they had to wait to see my oncologist before they could ring me, in spite of the clear scan. Thank goodness she wasn't on holiday. 

The reality is now that the shoulder pain is still as bad as it was and I can't restart any treatment for it until the x-ray results come through!

Steve 

I was told by the Nurses right after my bone scan, that all was fine - but I expect they have their protocol, AKA Bull**** 😄

 

User
Posted 07 Oct 2020 at 08:56

Hi Steve so sorry to hear about your psa result. Stay safe and positive..

 

Carl.

User
Posted 07 Oct 2020 at 10:32
Time to nag for scan to see what is going on?
User
Posted 07 Oct 2020 at 11:07

So sorry to read this Steve. How have you been coping on the Zoladex? 

Ido4

User
Posted 07 Oct 2020 at 11:35

Steve

Sorry to see another rise, hope the extra treatment does not cause a problem.

Thanks Chris and Dawn

User
Posted 07 Oct 2020 at 16:36
Burger.

Sorry to hear that, mate. Keep fighting. We are all in your corner.

User
Posted 07 Oct 2020 at 16:57
Sorry to hear about the rise Steve but it sounds like they have a plan to deal with it

Try and stay positive mate

Bri

User
Posted 07 Oct 2020 at 19:41

Sorry to read this Steve, hope the extra meds do their stuff for you 

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

 
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