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PSA 60, G3+4

User
Posted 11 Nov 2022 at 17:22

My PSA was 60 when tested several weeks ago hence the biopsy 12 days ago. Today I got the news I am positive for cancer, Gleason score was 3+4. I was also told it had broken through the prostrate lining but they couldn't see any clear evidence it had spread locally to the bones or lymph based on the Nuclear medicine scan or the general area done before the biopsy. The doctor also stated the cancer is just a bit too big for Brachytherapy.


They did observe a lesion in my left arm so have ordered an MRI of this and a PET scan due to the unusually high PSA for my age (57) just to check it hasn't spread. So once again I'm in a holding pattern like I was when waiting for the biopsy results. The doctor has currently given me a prescription for Bicalutamide (hormone treatment) to commence immediately post 'PET scan & blood test', to check if the PSA has gone down at all and to check for evidence of cancer anywhere else. The high PSA is a worry as my category is localised advanced and of course my worry is it could easily move to 'advanced'.


The doctor also said I would be referred to a Prostate Cancer Clinic in Guildford, a Nuffield hospital, sounds good but no idea. I'm still taking all this in and feel like burying myself in a duvet in self-pity. Finding it hard to muster the energy to soldier on, making plans for the future and trying to find the positive is hard to do right now. 

User
Posted 11 Nov 2022 at 21:42
Hi Gerry, i was 53 when diagnosed, it does turn your world upside down for a good while no doubt, but i felt a lot better once i had made my mind up on a treatment plan from the choices given. I also had a great specialist nurse to discuss things with, and there are nurses you can contact via this site to talk about any aspect of PC and treatments.


Best of Luck,
Nick
User
Posted 12 Nov 2022 at 11:36

Hi Nick thanks for replying. Once I've done a bit more reading I think I'm going to avail of the counselling on offer. The Urology doctor seems to be suggesting HT & RT but also said things depend on my PSA going down hence another blood test which is confusing me a bit as I thought the HT would reduce the PSA by stopping the testosterone which feeds the PC. I'm going to have to go back to my Oncology nurse to get clarification. Yes mentally it's tough sometimes I'm wondering what's the point in doing anything at all and other times optimism and humour save the day.

User
Posted 12 Nov 2022 at 16:38
Gerry, locally advanced prostate cancer doesn't become advanced if it is left for a little while - they are two different things based on whether the spread is in the pelvic area or further afield in your body. The bit that has come outside your prostate isn't creeping towards your bones; I think that is often what patients imagine is going on inside their body but it doesn't happen that way.

If the lesion in your arm is confirmed to be a metastasis (prostate cancer cells), you will be upgraded to advanced. It is very rare for prostate cancer to go to the arm but even if it is the case, men with bone mets can still be alive and well 10 or 15 years later. If the PET scan comes back clear, you are on a curative pathway and should be able to have the treatment, put it all behind you and get on with life.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Nov 2022 at 16:42
Sorry - an afterthought. The HT does usually bring the PSA down rapidly - you have understood correctly. The consultant might just have been a bit clumsy with his language and has no reason to think your PSA won't fall; perhaps he was just being a little cautious.

Do you have your diagnosis in writing? Does it say that you have adenocarcinoma? It is the most common type of prostte cancer but there are many other types as well.

Also, has anyone told you to apply for free prescriptions? You can get the application form from the chemist and then either your GP or specialist nurse can complete it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Nov 2022 at 23:20

Hi Lyn,


You are a ray of hope that I desperately need right now even if it's just to calm my mind till the next storm. Tonight I could feel the stress in my chest as tension so tomorrow I'll be taking myself off on a very long walk in the countryside. I don't yet have my diagnosis in writing and it wasn't mentioned so I'm wondering if they are going to wait for the results of the PET scan. Thank you again.


I've got a lot of reading lined up since my initial diagnosis and I know I need to start taking notes and making sure I understand what's going on. 


One thing that occurred to me today was he mentioned I had a lesion on or in (can't remember which he said) my left arm and would request an MRI be done. It just occurred to me I'd fallen off my bike onto my left side a couple of weeks ago, it was a bit painful at the time but that's all. 


I'm trying to figure out the relationship (if there is one) between PSA and the spread of the cancer. In other words is it possible to have a high PSA going into the 100s for both localised, localised advanced and advanced prostate cancer?

User
Posted 12 Nov 2022 at 23:49

Originally Posted by: Online Community Member
Sorry - an afterthought. The HT does usually bring the PSA down rapidly - you have understood correctly. The consultant might just have been a bit clumsy with his language and has no reason to think your PSA won't fall; perhaps he was just being a little cautious.

Do you have your diagnosis in writing? Does it say that you have adenocarcinoma? It is the most common type of prostte cancer but there are many other types as well.

Also, has anyone told you to apply for free prescriptions? You can get the application form from the chemist and then either your GP or specialist nurse can complete it.


 


No, they haven't I will certainly be looking into that as I don't work full-time. Thank you for letting me know this :)


Should I have been given a diagnosis in writing as regards cancer type regardless of the upcoming PET scan?

User
Posted 13 Nov 2022 at 00:47

Originally Posted by: Online Community Member
 


I'm trying to figure out the relationship (if there is one) between PSA and the spread of the cancer. In other words is it possible to have a high PSA going into the 100s for both localised, localised advanced and advanced prostate cancer?



There isn't always a relationship between the two; all the PSA does is indicate that further assessment is needed. We had a man on here whose PSA was 3 but he had bone mets all over his body; we have had a few men recently with PSA of 80 or more who were subsequently told they did not have cancer. My husband's PSA was 3.1 and assumed to be a very early diagnosis but it turned out to be locally advanced to his bladder neck.


Obviously, once the PSA gets very high, the likelihood of mets in bone or soft organs becomes very high - generally speaking, men with bone mets fare better than men with mets in lung, kidneys, liver, etc. 


The scan picks up bone activity / growth but would not always be able to tell the difference between a healing injury and mets. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Nov 2022 at 00:49

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
Sorry - an afterthought. The HT does usually bring the PSA down rapidly - you have understood correctly. The consultant might just have been a bit clumsy with his language and has no reason to think your PSA won't fall; perhaps he was just being a little cautious.

Do you have your diagnosis in writing? Does it say that you have adenocarcinoma? It is the most common type of prostte cancer but there are many other types as well.

Also, has anyone told you to apply for free prescriptions? You can get the application form from the chemist and then either your GP or specialist nurse can complete it.


 


No, they haven't I will certainly be looking into that as I don't work full-time. Thank you for letting me know this :)


Should I have been given a diagnosis in writing as regards cancer type regardless of the upcoming PET scan?



The consultant will write to your GP with the diagnosis and instructions on what medication to prescribe. Some hospitals automatically copy the patient into all letters they send to the GP; others only do so if you request it. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2022 at 22:44

Looking at https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/ it would seem I'm in the high risk category since my PSA was 60. My Gleason score came out as 7 (3+4) and my cancer had progressed through the prostrate shell. The doctor in Urology who gave me my initial diagnosis said he didn't think my lymph nodes had cancer but I was being sent for an urgent PET scan. He has based his info on the DRE, the biopsy,  MRI & Nuclear bone scans. 


TBH I'm expecting the worst as my PSA level is throwing me in at the deep end. I know it's really hard for anyone to say and it's pointless giving false hope or trying to pre-emptively gives answers until the PET scan is in. But if the PET doesn't throw up bad news am I curative or have I gone past that?

User
Posted 14 Nov 2022 at 23:48
They wouldn't be offering you RT if they didn't believe it was curative.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Nov 2022 at 08:14
To be honest no one knows if any prostate cancer is curable or not...

You really have to focus on the hand you are dealt, educate yourself on the best treatment for your PC, decide if that is what is best for you, then focus on getting the NHS to actually deliver it.

There are guys on here who were diagnosed with mets over 10 years ago who are now old men. Others who thought they were on a curative path that turned out not to be but still enjoying life. Some who chose to ignore expert advice and do their own thing and with hindsight have made the correct decision. Others who sadly make as couple of posts and succumb really quickly to this fickle disease..

User
Posted 15 Nov 2022 at 13:52

You are correct francij1 it is a terrible desease we are battling and who knows how any off us are going to end up  but the treatment has improved and we all hope for the best it is the only way forward 👍

User
Posted 15 Nov 2022 at 15:03

The bone scan doesn't detect prostate cancer directly, but it detects recently growing bone, because mets cause bone changes around them. If you've damaged or broken a bone in the last 6 months, it will show up on the bone scan too as it's healing. So does arthritis (although bone mets don't tend to be on joint surfaces where arthritis is, so that's quite easy to distinguish). So falling off your bike could be the cause if it caused some micro-fractures. If there are just one or two suspicious spots, they will get more detailed scans or X-rays to check for mets specifically.


The reason to delay the bicalutamide is that it will impact the PSA (and they don't want that until they have a second PSA test and can see if/how it's changing by itself), and it would reduce the sensitivity of the PSMA scan.


By the way, if you were interested in Brachytherapy, you need to ask an oncologist who does it if you're suitable. I would not take the word of a urologist on this.


I had what might be a similar diagnosis to you, and I had a combination of external beam radiotherapy, and HDR brachytherapy. (It's all in my profile.)

Edited by member 15 Nov 2022 at 15:07  | Reason: Not specified

User
Posted 29 May 2023 at 13:39

Okay I've not updated for a while but the long and short of it is I'm down for a prostatectomy in about 3 weeks. I will post more details and fill in the gaps. But right now I need a bit of help. How the hell do I find out how many prostatectomies a surgeon has performed? I've spent an hour on the web trying to get this information and had a look at the baus.org.uk site but to no avail. Could someone give me the link, please

User
Posted 29 May 2023 at 14:07

The information was on the BAUS website, but it vanished a few months ago. I did ask a BAUS surgeon, but he was unaware it was being taken down, so he didn't know why.

User
Posted 29 May 2023 at 14:44
You could ask who would be primarily responsible for your operation and ask his/her secretary about the number of Prostatectomies done and the frequency. Be aware that others assist or may play a part. (This was discussed in a thread awhile back on this forum). You don't say whether this will be using 'open' or 'robotic surgery' which although be close in eventual outcomes, can differ in a number of ways in the short to medium term.
Barry
User
Posted 29 May 2023 at 15:52

It will be done using the De Vinci robot. Thanks

 
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