PSA 0.6 after Radical Prostectomy

User

Posted 29 May 2020 at 17:05

Hello all,

I'm new to the group so I'll give you some background info.

I'm 67 and was diagnosed in December last year with a Gleason of 4+3 and a Staging of T3a NI Mo that meant the cancer had spread to the Lymph Nodes, I was immediately put on Hormone treatment. I had a Radical Prostectomy in March where 13 nodes were removed along with the prostrate. My recovery has gone well and I have 98% control so the incontinence worry has all but gone. Last week I had the first blood test to determine my PSA level and was shocked to be told that it was 0.6; another blood test is taking place in two weeks to confirm this and to see if it has risen.

Obviously, mentally I am now all over the place. From feeling great about how good things have gone to the worry of what is going to happen. I know it's probably natural, but I worry that I'm not being told everything (I want to know how good or bad things are) or that valuable time is slipping bye. Not to mention the impact of Covid 19 on any future treatment. I should say that I can't fault the treatment Iv'e had so far or the team treating me but they have these additional pressures that they or I have no control over.

The process seems well documented so I have a good idea what is likely to happen as far as tests etc, but it just seems that suddenly everything is running in slow motion. I have this urge to phone my Consultant to ask him what's happening (but I don't).

I'm sure things are going according to whatever plan and things will be fine, I will remain positive!

User

Posted 29 May 2020 at 17:05

Hello all,

I'm new to the group so I'll give you some background info.

I'm sure things are going according to whatever plan and things will be fine, I will remain positive!

User

Posted 30 May 2020 at 07:43

I and two friends were diagnosed around the same time about two years ago, and had prostatectomies. I and another friend had top-rated expensive surgeons and the other a bog standard NHS surgeon.

Both my friends had recurrence shortly afterwards and both had to have adjuvant therapies, but we are all fine now, with undetectable PSA. One friend has one of the most senior jobs in English football, and you’ll see him on the telly when the Premier League (clue?) starts up, looking good.

My pre-op biopsy staging was T2 something, but was upgraded (not to First Class!) post-operative biopsy to T3aN1M0, with two lymph nodes out of fourteen removed proving cancerous. My PSA has been undetectable since the op.

You might enquire about a PET-PSMA scan with a Choline tracer (although the Gallium-68 tracer is more accurate - and more expensive) to try to locate precisely the source of the recurrence, so Dan Dare has more idea where to point his ray-gun, rather than using a scatter-gun approach.

I hope your adjuvant treatment is successful.

Best of luck.

Cheers, John.

Edited by member 31 May 2020 at 04:41 | Reason: Not specified

User

Posted 10 Sep 2023 at 12:35

Hi Chris,

In some ways I looked on the Covid lockdown as a god-send as I was put on Enzo immediately (at the time it had only just be cleared by NICE). I probably have fallen into the trap of thinking there's no other option for me as things have been pretty quiet apart from the usual hormone treatment side effects (hot flushes, tiredness etc). I have had a PSMA scan in London and that didn't show any obvious signs. My three monthly checkpoints have been over the phone with the Onco which isn't very personal and difficult to ask questions.

I will take up your suggestion to call the cancer nurses for their opinion.

Thanks again

Pete

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User

Posted 29 May 2020 at 23:18

I am really sorry to read your post but to be honest, with a T3 N1 I cannot imagine why you had the op - was it explained to you that a T3 can be 50/50 for needing adjuvant treatment and an N1 is usually considered unsuitable for surgery? Did you go ahead with the op knowing that HT/RT would probably also be needed?

Are you still on the hormones?

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

User

Posted 30 May 2020 at 06:54

It was difficult for me to understand the severity of my condition at the time despite clear explanations of my options from the medical team; the options I was given were Radio Therapy or Surgery. Based on my own research I felt my best option was surgery (Radiotherapy was not particle logistically). The success probability of both procedures were explained (these were pretty low) and yes the probability of further treatment was explained.

I have only had one hormone injection (February), no further top-up's as I understand it may skew any test results.

User

Posted 30 May 2020 at 07:43

I and two friends were diagnosed around the same time about two years ago, and had prostatectomies. I and another friend had top-rated expensive surgeons and the other a bog standard NHS surgeon.

I hope your adjuvant treatment is successful.

Best of luck.

Cheers, John.

Edited by member 31 May 2020 at 04:41 | Reason: Not specified

User

Posted 30 May 2020 at 08:42

They only noticed I was N1 after my surgery and my post op psa was 1.5. Five of eighteen lymph nodes were cancerous bilaterally. I was offered RT on many occasions but was told with my rapidly advancing psa that it was unlikely to be curative so I didn’t have it. Mentally I was a wreck from the damage the surgery had caused me as a 48 yr old man , so I didn’t want further damage on a whim.

User

Posted 30 May 2020 at 09:00

Pashes

Did you have any of the "better" tracer type scans prior to your surgery ?

Thanks Chris

User

Posted 30 May 2020 at 09:11

Originally Posted by: Online Community Member

Okay - so I hope that the urologist is now referring you to oncology; that should be the first step & I wouldn't accept the urology department saying "let's wait for another PSA test first". Oncology should offer you a detailed scan (they may refer to it as a PET scan, PSMA scan, G68 or F18 scan) to see whether the remaining tumours can be spotted. If these are in the prostate bed or pelvic area, then adjuvant radiotherapy with HT is the obvious next step.

However, if the tumours are in distant lymph nodes (as your diagnosis suggests - that's what N1 means) there is no point doing RT so they may only offer you long term HT or they may suggest early chemo with HT. If they can't see any tumour sites on the scan, that suggests that there may be many tiny clusters of cancer cells distributed around your body (referred to as micro-mets) and again, long term HT with or without chemo will be the recommended path.

Edited by member 30 May 2020 at 11:20 | Reason: Not specified

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

User

Posted 30 May 2020 at 09:14

Thanks for your responses everyone.

I have to say that joining the community was one of my better decisions, although my wife would like to think that it was her idea. I feel a sense of relief that I can communicate with people who are fighting the same battle and, from what I've been reading here, I am better placed to ask the right questions when the time comes. Knowing that I can ask a question on something I don't understand and get answers from people who are going through or have been through the same journey gives me great reassurance.

User

Posted 30 May 2020 at 09:21

Small numbers of affected lymph nodes can be treated with RT too

User

Posted 30 May 2020 at 16:16

Hi Pashes, Lyn is absolutely bang on. You need to see oncology soon and get some scanning done. Then they can present you with a treatment path which will be guided by the scans. Best wishes,

Ido4

User

Posted 30 May 2020 at 16:50

Originally Posted by: Online Community Member

However, if the tumours are in distant lymph nodes (as your diagnosis suggests - that's what N1 means)

N1 means spread to nearby lymph nodes.
Many people with N1 have curative radiotherapy (nowadays, often with chemo too).

But I share your view this wasn't a diagnosis suitable for prostatectomy.

User

Posted 31 May 2020 at 01:23

Depends who you read & where you live - you can be N1 and diagnosed with locally advanced or advanced PCa, depending on whether the affected nodes are in the pelvis or further away and whether it is only a couple or a lot.

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

User

Posted 01 Jun 2020 at 10:52

MDT meeting today to discuss my case, I'm expecting a call this afternoon. I will take you advice and demand to be moved to the Oncologist, if that hasn't already been done.

Thanks again for the advice!

User

Posted 29 Jun 2020 at 10:07

I am 70yrs old and have had problems with my prostate for years having endured 3 opps for a bladder neck restriction and 2 turps the last one hardly 2 years ago then went back with peeing problems in January to be told in April I have an aggressive T3 tumour Gleason 8 and my local nhs hospital would not remove it. I went down the private route with a excellent high volume surgeon who removed it on the 6th June am convinced I went down the right course of treatment for me when told clear margins and nothing in the lymph nodes and no further treatment just PSA tests seen improvements in the peeing department and feeling very lucky.

User

Posted 15 Jul 2020 at 08:27

Been offline for a while waiting for things to happen. Had a trip to London yesterday to have a PSMA full body scan (hoping for results to been turned round pretty quick). In the meantime, I have been transferred over to an Oncologist rather than the Urologist and have started re-taking hormone pills (injection due in a couple of weeks).

Thanks all for the advice, it helped me so much at a very critical point in my journey.

User

Posted 15 Jul 2020 at 12:24

Pashes

Do you know what your current PSA is , I saw it was 0.6 some time ago. Just wondering if you had another PSA test.

Thanks Chris

User

Posted 15 Jul 2020 at 12:38

No PSA test since the last one at 0.6.

User

Posted 12 Sep 2020 at 10:17

Hello all,

It's been a while since my last post. Frustratingly, nothing much has happened apart from my 3 monthly Prostrap injection and a PSA test, the results show a drop from 0.6 to 0.4 (great news).

I'm still waiting for an appointment to see the Oncologist despite several calls requesting an update. I can only assume that they feel my PSA is low enough not to warrant an appointment yet. Although the PSA results are going the right way I read somewhere that hormone treatment can skew PSA readings. So, it would be nice to know what my treatment plan is (if any).

I am told that prostrate cancer treatment is now back to normal, I'm not so sure it is as my experience shows that appointments are few and far between and calls are not being returned.

Is anyone having the same experience?

Is anyone with the same PSA having treatment?

Your views on what I should do or expect would be welcome.

User

Posted 12 Sep 2020 at 11:12

It isn't that the hormones can skew the PSA, the PSA shows whether or not the hormone treatment is working.

It seems your treatment plan is to continue with the HT for the time being. Has your GP received a letter from the hospital, with the results of the PSMA scan from July? That letter may also state whether you are on long term HT or whether the intention is to offer you salvage radiotherapy once you have had the hormones for a few months.

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

User

Posted 12 Sep 2020 at 13:33

The PSMA scan results were given me by the Consultant Urologist who said there was no indication of significant metastasis. No treatment plan was mentioned apart from continuing with Prostat and the transfer to the Oncologist. I will talk to my GP and ask what correspondence he/she has.

Thanks for the advice

User

Posted 03 Nov 2021 at 11:40

Hello all,

I thought I'd just post an update and ask a question. My treatment is going well, on Enzolutamide and regular Prostrap injections that seem to be keeping PSA under control. Usual side effects flushes, tiredness but am experiencing a great deal of joint pain in my hands, knees and have lower back pain. The pain is at it's worst first thing in the morning and late evening. Have been to GP who thinks it may be arthritis so I have had blood tests to check this out (awaiting results). Question: has anyone else experienced these symptoms during their journey?

Thanks in advance

User

Posted 05 Nov 2021 at 10:37

Hello Pashes,

I experienced all of the symptoms you described whilst on Prostrap, however I do not drink alcohol or smoke & have a strict diet, I lost 2 stone in weight doing this along with 1 hour a week exercise ie walks & dumbbells to keep muscle strength in arms .

Occasionally I took Ibuprofen to ease discomfort but have not taken any for months.

Kind Regards

James

User

Posted 05 Nov 2021 at 15:49

Hi Pashes,

I experience exactly the same symptoms as yourself, first thing in the morning and after 8pm in the evenings. Hands, legs and lowerback. I am on Enzalutmide and 3 monthly decapeptyl injections. I find weight training alleviates them somewhat but I do still experience stiffness especially if i sit in one place for a long time (> 45 minutes). I use hand grips/strength builders which i purchased on Amazon as I also struggle to do simple tasks like opening jars.

Cheers

Jay

User

Posted 05 Nov 2021 at 17:37

Thanks so much for your replies James and Jay.

What a relief, I now understand what's going on. I'm just surprised my Onco or GP's didn't pick this as it appears not to be an uncommon side effect of Enzo or Prostrap. So, now it's more exercise and a stress ball or hand grips for me.

Thanks again

Peter

User

Posted 05 Nov 2021 at 18:34

Swimming will probably help

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

User

Posted 09 Sep 2023 at 16:09

Hello all,

It's been a while since my last update so I thought I would let you know how my journey is going so far. I've been on Enzo and Prostrap for a couple of years now and my PSA is behaving (undetectable). The downside is that The Enzo has been playing havoc with my bones, I have osteoporosis in most of my joints and arthritis in my hands. These are all being treated various drugs or injections and my Oncologist has sent me to see an Alternative Therapist for massage and acupuncture (yet to have the acupuncture). I'm going to the gym 3 times a week which helps and I end each session with a swim. The joint pain is very debilitating so much so that I often wonder how long I can bear the treatment before I say enough is enough, but I keep reminding myself what the alternative could be. I also remember the Onco telling me that the cancer is a particularly aggressive variety (I didn't know there were varying degrees of cancer, I need to do more research) and that the spread to the lymph nodes was significant.

So that's it so far, I wish you all the very best.

User

Posted 10 Sep 2023 at 06:17

So far as I can see you had a prostatectomy, your psa went up, you were put on Prostap and Enzalutamide and referred to an oncologist, who you are still in contact with.

Have you has any further treatment such as radio therapy or follow up surgery or maybe opted for AS? You seem to be relying on hormone suppressants alone.

Jules

Edited by member 10 Sep 2023 at 06:53 | Reason: Not specified

User

Posted 10 Sep 2023 at 10:13

No Radio or chemotherapy, I was diagnosed just before the first full lockdown so other treatments were not available at the time so I was put on Enzo. These seem to be doing the job but it's a struggle with joint pain etc, I must admit now that I am almost at the 4 year anniversary I wonder how long I can persevere as the symptom worsen by the day.

Thanks for your interest

User

Posted 10 Sep 2023 at 10:58

Pashes, your treatment following recurrence, may have been appropriate at the time. I wonder if due to covid you have slipped through the net . Salvage RT after surgery is pretty common. Was salvage RT ever discussed,did you refuse it. Not sure how scans would work now you are on HT.

In your position I would call the prostate cancer UK nurses,( number at the Top of the page) and discuss your situation.

Thanks Chris

User

Posted 10 Sep 2023 at 12:35

Hi Chris,

I will take up your suggestion to call the cancer nurses for their opinion.

Thanks again

Pete

User

Posted 10 Sep 2023 at 20:44

Colwickchris makes a good point. I started on a similar path to you. Diagnosed T3bN0M0, Gleason 4+3. Opted for RP and 34 lymph nodes removed, one of which tuned out to be cancerous. Post op PSA was 0.28 and histology on the prostate revealed a positive margin. A subsequent PSMA PET scan didn't show up anything significant, I underwent Salvage radiotherapy (SRT) to the prostate bed along with 6 months of hormone therapy. It's still relatively early days but it does seem to have done the trick. Successful SRT could mean you can get off the hormone therapy.

User

Posted 11 Sep 2023 at 00:09

Originally Posted by: Online Community Member

Pashes, your first post indicated that you had a T3a N1 M0 staging but this post about a month later seems to suggest that there were no significant mets. based on a PSMA PET scan after your prostatectomy. If that's the case you're very much in the same position as ChrisB above. I can't figure out if you were taking prostap at the time of your PSMA scan because if that was the case it would have reduced the size of your mets and made it hard for a scan to pick anything up.

A key question for you at this time will be, what mets do you have and where are they? There's some chat between Lyn and Andy, above, about the location of lymph node mets. and, if you have them, location matters when determining if treatment is possible.

There might be some missing parts of your story that would make it clearer why you've had no follow up treatment and very little help from your oncologist but if you don't have any mets there is definitely the possibility of further treatment.

As you probably know, the drugs you've been prescribed don't last indefinitely and at best, only put you into a holding pattern. I hope the prostate nurses can help with some ideas to get things moving.

Jules

edit: An afterthought here. Sometimes when people have been on drugs like those you're taking and their progress is good, they can be given a "holiday" from them for a period. I don't know if that would help identify if you have any residual mets but that's going to be essential if you go for salvage RT. Andy62 or the cancer nurses might be helpful on this option. Really, your oncologist should have been more involved and you should have been better informed by him. Might be time for a new one?

Edited by member 11 Sep 2023 at 17:13 | Reason: Not specified

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