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Dad diagnosed with T3a at 63

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User
Posted 16 Jan 2023 at 13:29

Hi all,

It has been helpful to read the stories here as my dad has been going through his tests. Today we got the bad news that he has cancer T3a with a Gleason score of 4+3. His PSA was 9 and then 11 after a retest. He asked his GP to put it in to his regular blood screening and hadn’t been tested for it for 8 years. 8 years ago his PSA was 5 but the doctor decided to do nothing about it. He has no symptoms so it was a real shock when we found out how advanced it was. My dad had no known history of men in the family who has prostate cancer.

He is going for a CT and I’m worried that it may have spread. What is the likelihood that this is the case if the MRI report saw no abnormality in the pelvic bone or lymph nodes? 

User
Posted 04 Dec 2023 at 16:28
So here's a good news story to hang your hat on. My husband was referred to oncology when his post-op PSA rose to 0.12 - it had reached 0.16 by the time he saw the oncologist. He had 6 months of hormone tablets and 20 sessions of radiotherapy - that was 12 years ago and most of the time now, it is easy to forget that he ever had prostate cancer!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jan 2023 at 17:07

Hi Chris,

Thank you, I’ll have a look at your story. He definitely won’t be scared of any treatment he wants to get rid of it by any means possible. 

Thanks,

WD95 

User
Posted 22 Mar 2024 at 14:31
The hormone treatment can't cure the cancer - it just starves it to stop it spreading.

As the scan was clear and dad's PSA rise is fairly typical, the onco is using years of experience and data to have a 'best guess' that the recurrence is in the prostate bed. Many men have salvage RT to the prostate bed following a recurrence and for a significant number, this is successful.

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

User
Posted 16 Jan 2023 at 23:29

Hi WD95,

Take a look at my profile too. My husband was diagnosed with similar figures. PSA 8, Gleason 4+3 and T3a. He was originally diagnosed with spread to lymph nodes and pelvic bone but we had a second opinion and PSMA pet scan which confirmed only lymph node spread. He had prostatectomy and removal of 14 nodes. He had 6 months of HT because of the original incurable diagnosis (before op). His post op figures changed to T2 and Gleason 4+5.

Post op we’re so lucky that he took it all in his stride really and has recovered well. His continence is good but suffers ED but signs of improvement. His psa is currently undetectable over 12 months on from op.

We realise all of this could change at anytime but also know anyone’s life can. We’ve had an incredible year enjoying life to the full and are so grateful for everything. I still worry most days and I’m sure I always will but life is good.

As many will tell you everyone’s story is different and people react differently to every treatment….this is just our experience.

Its such a worrying time at diagnosis but things do get easier when you have a plan in place and know what is happening.

Wishing your dad the very best of luck.

Elaine

User
Posted 17 Jan 2023 at 11:14

I am also 63 and was diagnosed late October following a PSA of 5, followed up by MRI and biopsy. My surgeon gave me no option other than robotic assisted radical prostatectomy which was carried out on 23rd December. Despite my fears, the operation was ‘easy’ in that there was no pain, just a soreness from the incisions. The catheter was a nuisance but did its job and was removed after two weeks. We are all different but take heart that surgery techniques are now very advanced and very often there is a good prognosis.

User
Posted 06 Feb 2023 at 15:42

Hi all,

Me and my dad just wanted to once again thank everyone for your support while we had the anxious wait for the further test results. If it wasn’t for this forum we both would have felt a lot worse going through it, definitely the toughest days of our lives. We got the good news that it hasn’t spread anywhere today after a 3 week wait, we’ll both be able to sleep a bit better. We were also told it probably would have likely spread within the next year or so so we were lucky to discover it with no symptoms. 

I asked if it was likely to spread in the next few months until he decides what treatment option to go with and they’ve put him on hormone tablets just to make sure. 

I’ll be doing the March the Month challenge for Prostate Cancer UK to raise awareness as I really didn’t know how common it was and we didn’t have any known family history. 

All the best,

WD95 

User
Posted 12 May 2023 at 08:07

Thought I’d give a bit of an update on how my dad is doing, I’ll start to update my profile as well as we get the post op PSA results.

He had his robotic assisted radical prostatectomy on the 25th April. The operation went well and as suspected the right nerve couldn’t be spared but my dad wasn’t bothered about that. He stayed for 2 nights because he lost quite a bit of blood and he had to come back to retest his blood because his haemoglobin was low. He had extensive bruising around the incision sites because he apparently bled into the tissue. But all good now much improved. 

My dad also had challenges controlling his diabetes because he wasn’t moving around as much the first couple of days so almost fainted one evening from low blood sugar but we think that’s because he wasn’t eating as much a few days post op. 

He had no issues with the catheter it was removed 2 weeks post op this Tuesday. He’s had quite a bit of leakage so has had to change a few pads a day but we’ve been told it’s probably because bacteria has been found in the urine so he’s on antibiotics now for a few days.

Post op review is scheduled for 6 weeks post op to retest PSA so fingers crossed there is no positive margin and he won’t need further treatment.

Kind regards,

WD_95

User
Posted 04 Dec 2023 at 16:04

Hi WD. A rising PSA after surgery is disappointing and worrying for your dad but with the positive margin on the prostate histology this was always going to be a likely outcome. Bad news, yes but by no means disastrous news.  It can be fixed. SRT is not that bad. It's a bit tedious because of all the visits. Six months of HT is fairly tolerable. I had some bowel and bladder problems afterwards. They gradually righted themselves but it took quite a few months. I wish your dad the best of luck in his onward journey. Chris

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User
Posted 16 Jan 2023 at 14:09

I was diagnosed at 62, PSA was 7.7 rising to 10 just before surgery Gleason 4+3. My T staging was upgraded to T3A after surgery. 

That was all nine years ago and although I have had an eventful journey, that surely could not be repeated, I am still here and I feel quite healthy.

Treatments have advanced since my diagnosis so hopefully you dad will be around for a very long time.

Thanks Chris 

Edited by member 16 Jan 2023 at 14:10  | Reason: Not specified

User
Posted 16 Jan 2023 at 14:38

Hi Chris, 

Thanks for your reply. That’s helped a lot as I still feel like we weren’t given a huge amount of information, I guess they want to be sure first that it hasn’t spread.

He’s been told complete removal or hormone therapy with radiation are his only options but he’s been recommended removal. Have you had any complications since your surgery? 

User
Posted 16 Jan 2023 at 16:25

WD95, one of the reasons I don't normally reply to newcomers is the worry of putting them off treatment. You can read my profile, by clicking on the picture, it doesn't make good reading but I adapted to the changes and a repeat of my situation is unlikely. 

The success figures for surgery or radiotherapy are similar at a success rate of about 70 percent. Not sure how they quantify successful.

Thanks Chris 

 

User
Posted 16 Jan 2023 at 17:07

Hi Chris,

Thank you, I’ll have a look at your story. He definitely won’t be scared of any treatment he wants to get rid of it by any means possible. 

Thanks,

WD95 

User
Posted 16 Jan 2023 at 20:20

WD95, It's a very difficult time for your dad. He is no doubt still coming to terms with his diagnosis and needs to make the difficult decision as which treatment option to take. There is no easy answer on that one. They both have similar levels of success but different potential side effects. It tends to come down to which side effects he feels he can best live with. He needs to ensure he gets to talk to both the surgeon and an Oncologist in order to make a well informed decision.

A bone scan is pretty normal for a T3 diagnosis but you shouldn't expect the worst. The results generally seem to come back negative for bone mets.

Chris

User
Posted 16 Jan 2023 at 23:29

Hi WD95,

Take a look at my profile too. My husband was diagnosed with similar figures. PSA 8, Gleason 4+3 and T3a. He was originally diagnosed with spread to lymph nodes and pelvic bone but we had a second opinion and PSMA pet scan which confirmed only lymph node spread. He had prostatectomy and removal of 14 nodes. He had 6 months of HT because of the original incurable diagnosis (before op). His post op figures changed to T2 and Gleason 4+5.

Post op we’re so lucky that he took it all in his stride really and has recovered well. His continence is good but suffers ED but signs of improvement. His psa is currently undetectable over 12 months on from op.

We realise all of this could change at anytime but also know anyone’s life can. We’ve had an incredible year enjoying life to the full and are so grateful for everything. I still worry most days and I’m sure I always will but life is good.

As many will tell you everyone’s story is different and people react differently to every treatment….this is just our experience.

Its such a worrying time at diagnosis but things do get easier when you have a plan in place and know what is happening.

Wishing your dad the very best of luck.

Elaine

User
Posted 17 Jan 2023 at 11:14

I am also 63 and was diagnosed late October following a PSA of 5, followed up by MRI and biopsy. My surgeon gave me no option other than robotic assisted radical prostatectomy which was carried out on 23rd December. Despite my fears, the operation was ‘easy’ in that there was no pain, just a soreness from the incisions. The catheter was a nuisance but did its job and was removed after two weeks. We are all different but take heart that surgery techniques are now very advanced and very often there is a good prognosis.

User
Posted 17 Jan 2023 at 21:12

Thank you all for your support. It has helped us process the diagnosis a lot better. Dad’s much more positive as he has more information but my emotions are still all over the place. This forum also helped us go into the appointment much more informed and it’s great that you are supporting so many people going through similar situations. 

WD95 

User
Posted 17 Jan 2023 at 21:24

Hi WD95,

One of the things that really helped me come to terms with this awful disease is by talking and listening on this forum and at my Local Maggies Cancer Support Group. Have you got a Maggies near you? If so both of you go and have a chat with them….I wish I had done so sooner rather than suffer for months!

You may well be doing this anyway but please write down all you questions and thoughts before going into any appointment…it really helps. Also I am told if you ask permission, it’s possible to record the appointment on your mobile, which could prove very useful, especially if you’re on your own.

User
Posted 20 Jan 2023 at 06:27

Hi WD95

I was diagnosed T3a, G7 (3+4) and had my operation last year 21st Jan. I had two choices of operation or RT + HT. I had operation, post pathology downgraded T2c with negative margin, minimum side effect and undetected PSA so far.

All the worries are these waiting time and it piles up as you go along. But few weeks ahead all vanishes. Like many others, I had lots of anxiety prior to decision. But once the diagnoses known and decision made, treatment done, I was relived as if I had put down a mountain off my shoulder.  The rest is history now.

One way to keep mind off the subject is to take upon a new mind boggling project. I started to solve Crossword and Sudoku. I am good at both now. We all get through these hard days one way or other. I am sure you and your father too will be OK.

Best wisjes

 

User
Posted 06 Feb 2023 at 15:42

Hi all,

Me and my dad just wanted to once again thank everyone for your support while we had the anxious wait for the further test results. If it wasn’t for this forum we both would have felt a lot worse going through it, definitely the toughest days of our lives. We got the good news that it hasn’t spread anywhere today after a 3 week wait, we’ll both be able to sleep a bit better. We were also told it probably would have likely spread within the next year or so so we were lucky to discover it with no symptoms. 

I asked if it was likely to spread in the next few months until he decides what treatment option to go with and they’ve put him on hormone tablets just to make sure. 

I’ll be doing the March the Month challenge for Prostate Cancer UK to raise awareness as I really didn’t know how common it was and we didn’t have any known family history. 

All the best,

WD95 

User
Posted 06 Feb 2023 at 19:20

So pleased you got some good news today. Good luck with your dads treatment going forward x

User
Posted 12 May 2023 at 08:07

Thought I’d give a bit of an update on how my dad is doing, I’ll start to update my profile as well as we get the post op PSA results.

He had his robotic assisted radical prostatectomy on the 25th April. The operation went well and as suspected the right nerve couldn’t be spared but my dad wasn’t bothered about that. He stayed for 2 nights because he lost quite a bit of blood and he had to come back to retest his blood because his haemoglobin was low. He had extensive bruising around the incision sites because he apparently bled into the tissue. But all good now much improved. 

My dad also had challenges controlling his diabetes because he wasn’t moving around as much the first couple of days so almost fainted one evening from low blood sugar but we think that’s because he wasn’t eating as much a few days post op. 

He had no issues with the catheter it was removed 2 weeks post op this Tuesday. He’s had quite a bit of leakage so has had to change a few pads a day but we’ve been told it’s probably because bacteria has been found in the urine so he’s on antibiotics now for a few days.

Post op review is scheduled for 6 weeks post op to retest PSA so fingers crossed there is no positive margin and he won’t need further treatment.

Kind regards,

WD_95

User
Posted 05 Jun 2023 at 13:08

Had post op follow up today to get the histology of the prostate and PSA results. Good news is that PSA is undetectable but we were both nervous to hear that there is a small positive margin and that the Gleason score has been upgraded to 9. We’ve been told that there’s not much that can be done now because of the PSA but I’m concerned of the possibility of rapid spread as it is aggressive. 

Should we be worried or is this a good outcome given the circumstances? 

Kind regards,

 

WD_95 

User
Posted 05 Jun 2023 at 13:16

I was diagnosed Gleason 9 and went down RT/HT route onco seems happy with psa off 0.01 so hopefully it's positive that psa remains low 👍 gaz

User
Posted 05 Jun 2023 at 14:08

The undetectable PSA is certainly a good outcome, probably on two counts. It's indicating the cancer hasn't spread to local lymph nodes and also the any cancer left behind with the positive margin must be very small. Thankfully prostrate cancer doesn't do rapid, even if its an aggressive one. It would be normal practice to leave it for now and monitor PSA. Once it gets to above 0.2 the may consider a PSMA PET scan to pin point any residual cancer in order to better target the salvage radiotherapy. My T3b histology post surgery had a positive margin and a PSA of 0.28. I started SRT seven months later. I don't now what the PSA was at that point as the last reading was in month five (0.61).

User
Posted 05 Jun 2023 at 16:42
It's good it's undetectable.

This is where an ultra sensitive test would be really useful. If that was the 3 decimal places then it would also provide significant reassurance about the margin too.

Have a read of Ulsterman if you need to understand why USPSA is useful in this scenario.

User
Posted 05 Jun 2023 at 21:09

That’s very useful information to know and very helpful thank you. I had a look at the report and it only went to two decimal places and his PSA was 0.01. 

User
Posted 05 Jun 2023 at 23:37
0.01 is ultra sensitive so that is good! If there was a < sign then it doesn't get any better!

Some places go down to 0.006 but 0.01 is definitely ultra sensetive

User
Posted 04 Dec 2023 at 15:30

Hi all,

Hope you’re well. I thought I’d post an update on my dad. His PSA unfortunately went up to 0.06 in September and is now at 0.12. The doctor wants to refer to oncology early now and he’ll need some salvage radiotherapy. 

We always knew this was a possibility but the idea of more treatment is affecting my dad a lot psychologically. He is also quite pessimistic and believes this is a death sentence even though I’ve tried reassuring him, seeing everyone’s stories here has been very helpful and has kept me informed. We had a good chat with a nurse that looked after him during his operation which helped. 

Kind regards,

WD_95

User
Posted 04 Dec 2023 at 16:04

Hi WD. A rising PSA after surgery is disappointing and worrying for your dad but with the positive margin on the prostate histology this was always going to be a likely outcome. Bad news, yes but by no means disastrous news.  It can be fixed. SRT is not that bad. It's a bit tedious because of all the visits. Six months of HT is fairly tolerable. I had some bowel and bladder problems afterwards. They gradually righted themselves but it took quite a few months. I wish your dad the best of luck in his onward journey. Chris

User
Posted 04 Dec 2023 at 16:28
So here's a good news story to hang your hat on. My husband was referred to oncology when his post-op PSA rose to 0.12 - it had reached 0.16 by the time he saw the oncologist. He had 6 months of hormone tablets and 20 sessions of radiotherapy - that was 12 years ago and most of the time now, it is easy to forget that he ever had prostate cancer!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2024 at 22:24

Thank you all for your continued support.

We had an initial conversation with the oncologist that left me feeling hopeless but it might be that I didn’t interpret it correctly. I didn’t think it was appropriate that the first thing they asked was why did you decide to go for the operation. They were part of the team that recommended an operation but I remember at the time they were trying to convince us to go for RT. It made me feel like they feel they might have chosen not the best part because the 4+5 Gleason score was missed at biopsy and got upgrade after the operation.

The surgeon was adamant that it’s likely local because of the positive margin but the oncologist mentioned they are doing the PSMA PET scan in case it has spread elsewhere. They haven’t been able to schedule it until the 6th March and I’m really worried it might spread rapidly by then but don’t know how likely this is. I’m hoping a PSA score of 0.12 means it’s likely local and will get resolved with HT and RT. 

I understand that they don’t want to promise anything and probably assume worst case scenario but this is mentally affecting us a lot harder than a year ago. We’ve both decided that we want to attend a session at Maggies and talk to others that are going through the same thing.

User
Posted 08 Jan 2024 at 23:03
Upgrades after surgery are very common in fact on here they almost seem mandatory. Don't dwell on that or your past choices.

The fact he had a positive margin is a positive factor towards salvage therapy being effective.

If you can afford it ask for a private PET scan referral it will help speed the re staging.

User
Posted 08 Jan 2024 at 23:23

So sorry to hear that your dads PSA is rising. He is pretty much following the same path as my husband so we can understand how you are feeling. We went into the operation knowing of spread already to one lymph node so maybe we were expecting the recurrence even more.

As soon as Robs PSA started to rise I was getting his psa tested every 6 weeks so we could keep an eye on how quickly it was doubling.

Its really good that they’re moving on this asap, I would maybe try to put your dad forward for any PSMA pet scan cancellations so hopefully he might get in earlier 🤞🏼keep ringing to check.

Rob had the RT and didn’t have too many problems during treatment. Just had a few issues over Christmas which we’re not sure if treatment related just waiting to hear from oncology.

Don’t despair though, no one wants to be in this position but I think it has to be looked at in a way that curative treatments are still available and no reason why your dad won’t be just fine.

Take care

Elaine

User
Posted 29 Jan 2024 at 20:45

Hi all,

Thank you for your continued support. It’s the wait that’s the worst as was mentioned earlier but we’re trying to keep busy and keep our mind off of it. 

Our local hospital has a Maggie’s centre right next to it. We both found it useful attending and it helped our mental health. I spoke to a woman that works there while my dad attended some sessions. 

We asked our GP if he could retest his PSA 6 weeks after the December reading and it’s now gone up to 0.2 which was about a week or two ago. He’ll have another retest beginning of February before the scan. The rate is increasing so probably will be another sharp rise by the time the scan comes.

User
Posted 22 Mar 2024 at 14:17

Hi all,

Hope everyone is well. 

We got the good news that the PET scan is clear today. The oncologist started him on hormone treatment the next day after the scan and he’s also on the injections now.

I might have misunderstood but the oncologist said once the PSA falls to 0.1 or 0.01 that they would start RT. Given that the scan didn’t pinpoint the recurrence anywhere, is it possible that the HT could cure it and that he wouldn’t need RT at all? Or do they still do RT around the area as a precautionary measure 

User
Posted 22 Mar 2024 at 14:31
The hormone treatment can't cure the cancer - it just starves it to stop it spreading.

As the scan was clear and dad's PSA rise is fairly typical, the onco is using years of experience and data to have a 'best guess' that the recurrence is in the prostate bed. Many men have salvage RT to the prostate bed following a recurrence and for a significant number, this is successful.

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

User
Posted 26 Mar 2024 at 08:33

Thanks LynEyre that makes sense. 

User
Posted 26 Mar 2024 at 09:14

Hi,

I had surgery and a positive margin in November 2019.

I had salvage radiotherapy in 2022 which going by my latest two PSA results of <0.010, has been successful. 

Wishing your Dad good luck.

Kev.

Edited by member 26 Mar 2024 at 09:15  | Reason: Typo

 
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