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User
Posted 28 Oct 2024 at 17:50

Hi All

Sorry if I have posted in the incorrect place- forums always confuse me. 

Not really sure what I am hoping to achieve but even if I can feel 1% better by posting I thought it was worth a shot. 

My Dad (64) works in construction and back in July some people came to site offering a prostate cancer pin prick test, my dad being in a senior position onsite went and had it done to encourage others. 

Fast forward he is told it came back abnormal and was sent for a blood test.

Fast forward again, his blood test came back with an elevated PSA (I think it was 10??)

Fast forward he was sent for an MRI, which showed a mass.

Fast forward again he had a biopsy.

Biopsy results were 3 out of 24 cells tested were found to be cancerous. 1 of those 3 was high the other 2 low.

The lump, is bulging against his muscle. 

He was offered surgery to remove the prostate or hormone therapy with radiation. The drs advised against the surgery due to the lumps location, they couldn't be confident they could remove it all and in such case he would need radiation anyway. 

He had a bone scan 2 weeks ago this Thursday - as we were told we caught it early we didn't think anything of the bone scan.. then Chris Hoy released his recent statement (all power to him but it's sent us all into a meltdown). At an appointment last week (for his first injection) we were told we WOULDN'T be contacted about the results and they would just go through them at the next appointment (3rd December), 3 days later he receives a letter in the post for an oncology appointment in early November.. this is making us all spiral out as it's now making us think the worst as we were told we wouldn't be contacted. 

Has anyone been in a similar position?

Any thoughts on the odds it may have spread?

Any advice?

We are all losing sleep, thinking the worse and going crazy waiting. 

Help!

Thank you. 

Edited by member 28 Oct 2024 at 19:25  | Reason: Not specified

User
Posted 28 Oct 2024 at 19:15

Oncology manage the radiotherapy treatment, so I would expect you would get an appointment with them.

Many hospitals send out appointment letters before they actually have results back, based on the length of the queue waiting for results and when they expect them back, so you can't necessarily tell anything from getting an appointment letter.

This won't stop you going crazy waiting for the result - this is the most anxious time during diagnosis, but it doesn't necessarily suggest bad news.

Edited by member 28 Oct 2024 at 19:19  | Reason: Not specified

User
Posted 29 Oct 2024 at 12:27
With a PSA of only 10 spread is unlikely. Not impossible, certainly, but unlikely. I know personally how stressful going through the diagnostic process can be, but it is the worst part of the whole thing. You'll feel a lot better when you have a treatment plan in place. I had radiotherapy and hormone therapy and didn't mind it too awful.

Roughly two thirds of men your dad's age have prostate cancer - it's a normal part of the male aging process. The overwhelming majority will die with it, not from it.

Please keep us updated about progress.

Best wishes,

Chris

User
Posted 31 Oct 2024 at 15:28

Originally Posted by: Online Community Member

**GOOD NEWS**

he got his bone scan results *drum roll* no spread and is contained within the prostate!

Fabulous news! I'm in the pub (yet again 😁) and will have an extra pint to celebrate. 👍

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User
Posted 28 Oct 2024 at 19:15

Oncology manage the radiotherapy treatment, so I would expect you would get an appointment with them.

Many hospitals send out appointment letters before they actually have results back, based on the length of the queue waiting for results and when they expect them back, so you can't necessarily tell anything from getting an appointment letter.

This won't stop you going crazy waiting for the result - this is the most anxious time during diagnosis, but it doesn't necessarily suggest bad news.

Edited by member 28 Oct 2024 at 19:19  | Reason: Not specified

User
Posted 29 Oct 2024 at 12:27
With a PSA of only 10 spread is unlikely. Not impossible, certainly, but unlikely. I know personally how stressful going through the diagnostic process can be, but it is the worst part of the whole thing. You'll feel a lot better when you have a treatment plan in place. I had radiotherapy and hormone therapy and didn't mind it too awful.

Roughly two thirds of men your dad's age have prostate cancer - it's a normal part of the male aging process. The overwhelming majority will die with it, not from it.

Please keep us updated about progress.

Best wishes,

Chris

User
Posted 29 Oct 2024 at 17:59

Originally Posted by: Online Community Member
With a PSA of only 10 spread is unlikely. Not impossible, certainly, but unlikely. I know personally how stressful going through the diagnostic process can be, but it is the worst part of the whole thing. You'll feel a lot better when you have a treatment plan in place. I had radiotherapy and hormone therapy and didn't mind it too awful.

Roughly two thirds of men your dad's age have prostate cancer - it's a normal part of the male aging process. The overwhelming majority will die with it, not from it.

Please keep us updated about progress.

Best wishes,

Chris

Hi Chris

 

Thank you for responding. After reading a few posts on here I'm begining to appreciate that a psa of 10 is a lot lower than others. 

 

Up until now I was only basing everything off of information my parents had told me, but have today been given a copy of the official letter with the extra info on. 

 

To confirm:

PSA was 10.4

3 cores out of the 22 tested came back positive. 

2 of the cores were gleason 3+4

1 of the cores was gleason 4+4

He has been given a diagnosis of t3a, which when I look it up says it has spread outside of the prostate, but my parents were apparently told that it hadn't. They were told it was pushing against the capsule but hadn't gone through it, but this doesn't tally with the diagnosis?

 

It reads:

 

"... gland with a left apical lesion which is in contact with the external sphincter and levator ani muscles.. it has no direct muscle invasion"

 

I'm a little confused with the jargon but it doesn't seem to tally up with what my parents were told. 

 

He has been on hormone tablets nearly 4 weeks and had a hormone injection last week. He is due another injection in November, with a view to start radiation in Jan. 

 

He had an oncology appointment booked for 3rd December, and has received another appointment for the 6th November following a bone scan a few weeks ago (still waiting results, they told us to call this coming Friday). 

 

We are making a list of questions and what we need clarifying ready for next week but just thought I'd see if you wouldn't mind seeing if you could make sense of any of the above as we are very out of our depth here :(

User
Posted 29 Oct 2024 at 18:00

Originally Posted by: Online Community Member

Oncology manage the radiotherapy treatment, so I would expect you would get an appointment with them.

Many hospitals send out appointment letters before they actually have results back, based on the length of the queue waiting for results and when they expect them back, so you can't necessarily tell anything from getting an appointment letter.

This won't stop you going crazy waiting for the result - this is the most anxious time during diagnosis, but it doesn't necessarily suggest bad news.

Thank you for your reply. 

We just thought it was weird as the nurse at his last appointment told us we wouldn't be contacted with the results

User
Posted 30 Oct 2024 at 06:00
Your dad has a serious prostate cancer, T3A with a 4+4 biopsy needs to be treated as soon as possible it's good your local NHS is delivering appointments sooner rather than delaying treatment.

Focus your stress on learning about this disease and what constitutes effective diagnosis and treatment. Eg was it a bone scan he had or a PSMA CT scan?

Don't put any weight on the timeliness of appointments being a proxy for results. NHS appointment prioritisation is non existent and chaotic. Just make sure he gets his chosen treatment ASAP.

User
Posted 30 Oct 2024 at 06:34

Originally Posted by: Online Community Member
Your dad has a serious prostate cancer, T3A with a 4+4 biopsy needs to be treated as soon as possible it's good your local NHS is delivering appointments sooner rather than delaying treatment.

Focus your stress on learning about this disease and what constitutes effective diagnosis and treatment. Eg was it a bone scan he had or a PSMA CT scan?

Don't put any weight on the timeliness of appointments being a proxy for results. NHS appointment prioritisation is non existent and chaotic. Just make sure he gets his chosen treatment ASAP.

 

Hi, I appreciate you taking the time to respond. I am new on here so don't want to come across as a cow but these kind of replies aren't overly helpful, if anything they just cause more stress.  Yes we are aware it is serious, hence the panic, we don't need to be told again my strangers on the Internet that it's serious. We are fully aware, that's not what I have posted for.

We have a treatment plan in place which he has started. 

We are trying to learn about it, we have read nearly every page on the Internet and hence ending up on here.

It was a bone scan. 

We aren't idilly sitting by not doing anything hoping an answer falls from the sky, which is how your message comes across. He started hormone therapy nearly 4 weeks ago (tablets), has had 1 injection, due another next month woth radiation in January.

Edited by member 30 Oct 2024 at 06:43  | Reason: Not specified

User
Posted 30 Oct 2024 at 09:34

Good morning AnonMac.

I'm sorry that you've had to join our 'Club' but welcome to the forum. It's lovely to see that you care so much for your dad and that you are doing everything you can to help.

As others have said diagnosis time is the worst. It seems, that in your dad's case, due to the actual location of the lesion within the prostate, that surgery has been deemed unsuitable. However, you've now got a treatment plan, which should be as equally effective.

There often appears to be confusion over whether or not the prostate capsule has actually been breached or not. Some of my tests indicated that the disease was prostate confined and others that it had protruded from it.

I was a similar age to your dad, when told, I had Gleason 8 (3+5),T3a, in 20 out of 24 cores. At this time my PSA was only 6.6. A bone scan came back all clear.

I had surgery which confirmed the cancer had breached the capsule (extraprostatic extension) and upped the Gleason score to 9 (4+5).

21 months later, my PSA is undetectable. I hope this helps.

Good luck with the bone scan result and your dad's further treatment.

 

 

User
Posted 30 Oct 2024 at 13:16

Originally Posted by: Online Community Member

Good morning AnonMac.

I'm sorry that you've had to join our 'Club' but welcome to the forum. It's lovely to see that you care so much for your dad and that you are doing everything you can to help.

As others have said diagnosis time is the worst. It seems, that in your dad's case, due to the actual location of the lesion within the prostate, that surgery has been deemed unsuitable. However, you've now got a treatment plan, which should be as equally effective.

There often appears to be confusion over whether or not the prostate capsule has actually been breached or not. Some of my tests indicated that the disease was prostate confined and others that it had protruded from it.

I was a similar age to your dad, when told, I had Gleason 8 (3+5),T3a, in 20 out of 24 cores. At this time my PSA was only 6.6. A bone scan came back all clear.

I had surgery which confirmed the cancer had breached the capsule (extraprostatic extension) and upped the Gleason score to 9 (4+5).

21 months later, my PSA is undetectable. I hope this helps.

Good luck with the bone scan result and your dad's further treatment.

 

Hi Adrian

Thank you for coming back to me.

I am so glad to hear you that your psa is undetectable 21 months later! Do you mind if I ask if you had surgery or radiation? 

Do you have any advice on things I can do for my dad in terms of his emotions. Some days he is good and others he is really down and snappy. When it was you, would you find it easier to be left alone or would you rather have been kept busy? I've been trying to arrange some "fun" things to do, like cinema, Christmas light trips in Nov/Dec, even just going to the garden centre for a coffee etc. I mentioned to my mum about booking something else that I had seen but she wasn't sure if keeping him busy was helping or if he would feel forced to go. Do you have any advice on this side of things?

Thank you again 

User
Posted 30 Oct 2024 at 14:37

Hi there 

really sorry your dad has found himself with PC 

My husband was diagnosed Gleeson 9 in April at the time biospy showed 6 out of 18 cores positive for cancer and only on the left side so t2b 

He opted for a Radical Prostectomy and had this in June 

His pathology came back as Gleeson 9 with cancer found in both sides of the Prostate that was extremely close to the edge. They took the left side nerve  bundle to try  for negative margins which they managed to get! So was T2C

He’s pleased with his decision to go for surgery and has coped pretty well he still wears a pad but is large continent bar odd occasions . 

His consultant is optimistic about his future and his first post op PSA was 0.01 he is having his second this week 

his intial PSA was 5.6 and his bone scan was clear and as I understand it a PSA of 10 make it unlikely for bone mets so I hope that’s the case with your dad.

The biggest problem we had was pushing for surgery quickly, if I don’t rang every day then the surgery would of been at least 8 weeks longer and with his pathology saying it was close to the edge I think pushing for cancellations was the correct thing for him. 

Feel free to keep asking questions as I found it really helped. 

Best Wishes 

M 

User
Posted 30 Oct 2024 at 15:59

Hi again.

Sorry for the delaying in replying. I've been to the pub. 🙂

In answer to your question, I had surgery, but if that is unsuitable for your dad, RT and HT should be as equally successful.

As for how it effected me mentally, like most the diagnosis came as a bit of a shock, even though my dad and younger brother had the disease. My wife and my four grown up kids, were obviously all upset when they were told. Your dad is bound to feel up and down. He will have days when he feels fine and others when coping will be more difficult. He'll probably be as concerned about the effect his disease will have on his loved ones as himself.

Personally, all I wanted to do was get on with life just the same as it had been prior to cancer raising its ugly head. I didn't want any extra love, attention or fuss. I just wanted to concentrate on getting better, but I suppose everyone is different. My family have been very supportive and always there if I need them. I've also been very lucky in having a couple of good friends who've also had prostate cancer and have been a great help. 

Once again best of luck to you, your dad, and the rest of the family. I hope all goes well and normality returns to you all. 

 

Edited by member 31 Oct 2024 at 08:05  | Reason: Typo

User
Posted 30 Oct 2024 at 17:52

Originally Posted by: Online Community Member

Do you have any advice on things I can do for my dad in terms of his emotions. Some days he is good and others he is really down and snappy. When it was you, would you find it easier to be left alone or would you rather have been kept busy?

Everyone is different, of course, but it takes time to come to terms with this kind of diagnosis, and you need to do that in your own way. Personally speaking I would have absolutely hated it if anyone had tried to "cheer me up". As I remarked previously, things will look a lot brighter once the diagnostic process is complete and you know where you stand.

Best wishes,

Chris

 

 

 

User
Posted 31 Oct 2024 at 14:38

Originally Posted by: Online Community Member

Hi again.

Sorry for the delaying in replying. I've been to the pub. 🙂

In answer to your question, I had surgery, but if that is unsuitable for your dad, RT and HT should be as equally successful.

As for how it effected me mentally, like most the diagnosis came as a bit of a shock, even though my dad and younger brother had the disease. My wife and my four grown up kids, were obviously all upset when they were told. Your dad is bound to feel up and down. He will have days when he feels fine and others when coping will be more difficult. He'll probably be as concerned about the effect his disease will have on his loved ones as himself.

Personally, all I wanted to do was get on with life just the same as it had been prior to cancer raising its ugly head. I didn't want any extra love, attention or fuss. I just wanted to concentrate on getting better, but I suppose everyone is different. My family have been very supportive and always there if I need them. I've also been very lucky in having a couple of good friends who've also had prostate cancer and have been a great help. 

Once again best of luck to you, your dad, and the rest of the family. I hope all goes well and normality returns to you all. 

 

Hi Adrian, 

Please don't apologise for the delayed reply, if anything it was a quick reply and you have a life to live. Ahh the pub, the one place my dad desperately wants to go, bless him.

Thank you for taking the time to reply, much appreciated. It's so hard, I know it's gut wrenching for me, I can't imagine how he must be feeling, plus he has severe needle phobia so that doesn't help the situation! I just want to do whatever I can for him, whether that's us being normal or him having a treat here and there, it's just so difficult, I doesn't often talk about it, I don't know if that's because he doesn't want to because he doesn't want to think about it or if he is worried he will upset us. 

Kudos to you and all the other men out there that have been through it and come out the other side it must be so tough. 

Thank you again, I hope you enjoyed your pint :)

User
Posted 31 Oct 2024 at 14:41

**GOOD NEWS**

Thankfully I have a dad who is as inpatient as I am and he spam called the hospital until someone answered and he got his bone scan results *drum roll* no spread and is contained within the prostate! I cannot being to describe the weight that has been lifted, I use that term a lot, oh that's a weight of the shoulders but thus was a literal weight, it's the best news I've had in a long time. Still got to get through treatment but I'm elated it hasn't spread .... and breathe.

 

Thank you to everyone who has responded, I really do appreciate and it has been comforting. 

User
Posted 31 Oct 2024 at 14:44

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Do you have any advice on things I can do for my dad in terms of his emotions. Some days he is good and others he is really down and snappy. When it was you, would you find it easier to be left alone or would you rather have been kept busy?

Everyone is different, of course, but it takes time to come to terms with this kind of diagnosis, and you need to do that in your own way. Personally speaking I would have absolutely hated it if anyone had tried to "cheer me up". As I remarked previously, things will look a lot brighter once the diagnostic process is complete and you know where you stand.

Best wishes,

Chris

Thank you for coming back to me Chris. It's becoming a trend that people are seemingly not wanted to be "cheered up" which is wild to me, but I can't imagine what it must be like to be the person going through it. I'll tread lightly with dad and will follow his lead. Thank you! 

 

P.s bone scan is clear 🥳🥳🥳🥳🥳

User
Posted 31 Oct 2024 at 15:28

Originally Posted by: Online Community Member

**GOOD NEWS**

he got his bone scan results *drum roll* no spread and is contained within the prostate!

Fabulous news! I'm in the pub (yet again 😁) and will have an extra pint to celebrate. 👍

User
Posted 01 Nov 2024 at 19:18

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

**GOOD NEWS**

he got his bone scan results *drum roll* no spread and is contained within the prostate!

Fabulous news! I'm in the pub (yet again 😁) and will have an extra pint to celebrate. 👍

Cheers 🍻

 
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