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Sudden jump in PSA levels

User
Posted 03 Apr 2021 at 07:31

Having read some of the posts on here i know that i may be worrying needlessly but i will share my story/family history so far.

I am 54 and apart from a little (ok a lot i'm 5'8" and 17.5 stone) excess weight, consider myself to be in reasonable good health considering that i still have lingering covid symptoms (loss of smell and taste but not for everything).

My oldest sister sister was diagnosed with breast cancer (can't remember when) several years ago which was treated successfully and she got on with her life. Then it returned and once again has been treated successfully. My one older brother was then diagnosed with prostate cancer back in 2014. He has had his prostate removed and is as fit and healthy as can be expected. I had my PSA levels checked at the time and it was found to be 1ng/ml so well within the normal range. Then both my Father and younger brother were diagnosed with prostate cancer. Both had treatment which were successful. My Father has unfortunately passed away due to other things but my younger brother is ok. I have had further PSA tests 1.1 ng/ml in Aug 2016 and 1.5ng/ml in Oct 2017. I have also had a couple of DRE's with nothing found. I was also having regular blood tests for pre-diabetes and the PSA was just added to them but due to covid haven't had any for a couple of years as i was due some back in March of last year which didn't happen. I had my regular bloods taken last Tuesday and on Thursday got a call from my GP where i was informed that my PSA level was of concern and that he wanted me to get another blood test done within the week (booked for next Wednesday morning). I spoke to my older brother who asked me what my PSA level was and as i did not know he said to call my GP and ask. As you may all appreciate that is not as easy at the moment. However my GP is in a practice that has multiple sites and a centralised call centre. When i rang the person i spoke to noticed that i have the patient access app on my phone and changed the permissions for me so that i could see my results (i did not know my original ones until after she had done this). To my surprise my PSA level has jumped to 11.8ng/ml (my records show it as microgrammes per litre which i believe work out at the same value). I'm not sure how blood test results are typed up (could be an accidental double tap on the number 1), but with my family history it has obviously got my mind racing at double speed imagining not the worst but has certainly got me anxious at can't wait for this next week to be over with so i can see if it was a mistake or not. My wife lost her first husband in an accident so you can all probably imagine what she is like at the moment even though we both know that if i have got PC then the outlook on the whole can be very good. We have already talked about possible actions if i have got it but it still does not stop that voice in the back of your head.

I know from reading the kind of support you guys and girls etc give everybody on here is great and i suppose i just needed to get it all off my chest as we are not telling family/friends until it is confirmed (except my one brother that is as i wanted his advice), but as i've already said despite all the reading and research etc it does not quieten that little nagging voice does it.

User
Posted 03 Apr 2021 at 09:21

Hi Jonno

That is a good detailed write up. I think with a family history like that it is wise to be having regular psa tests.

Mistakes on typing up results can happen, I had a slight issue with some of my results, it would take up half this post to explain what went wrong so I won't go in to detail. From what I discovered it seems the test machines are all pretty much automated so not very much room for human error, though it definitely happens occasionally. I'm glad your GP has asked for a retest, that is the first thing to do.

As you know from family experience this is a very treatable disease. You will just have to go through the diagnosis process and see what happens. Keep posting, keep us informed, ask any questions. 

Dave

User
Posted 04 Apr 2021 at 08:13
With your family history even if the PSA test comes back at 1.1 I would be nagging for an MRI.
User
Posted 08 Apr 2021 at 18:24
Very sensible. A PSA that high certainly requires investigation.

Best wishes,

Chris

User
Posted 13 May 2021 at 11:07
you are doing the right thing by getting yourself well informed so that you can have some control in what is going on.

Good luck,

User
Posted 13 May 2021 at 17:11

Originally Posted by: Online Community Member

Biopsies were taken last Tuesday and I have a telephone appointment on the 13th to discuss the results 🤞

Hope consultation went well and you can update us.

Barry
User
Posted 14 May 2021 at 01:16
Not the news you wanted but were likely expecting a PCa diagnosis. At least things have moved quickly and appropriate treatment will be offered after the last scans are done.
Barry
User
Posted 25 May 2021 at 20:37
Pre covid the MDT meetings in our neck of the woods were once a week. i don't know whether they have changed or not. We missed the first weekly one by a day or so but got in on the following one. So it won't be too long.
User
Posted 28 May 2021 at 13:32
Those sudden unexpected calls certainly raise your heart rate don't they?

Good they are recommending your chosen treatment path. We had a choice of RP or RT...the MDT were prepared to do both. He wanted mothership out asap so we too were glad we got our personal choice.

Good luck with that PET scan, lets hope any suspicions are groundless but it's all good with the bone scan 👍

LW

User
Posted 28 May 2021 at 17:15
You will feel much better and more proactive when treatment starts.

These weeks of waiting while you get your full diagnosis are the pits.

Take care

LW

User
Posted 29 May 2021 at 08:21
Everyone feels that way, I suspect. Like you I was strongly guided towards HT/RT when I was diagnosed three years ago. I didn't find treatment too bad at all.

Best wishes,

Chris

User
Posted 03 Jun 2021 at 10:13

Sending best wishes to you.

User
Posted 18 Jun 2021 at 22:46

Hope all goes well for you as you start towards hormone therapy.

Ido4

User
Posted 19 Jun 2021 at 07:46

Cheers Ian

User
Posted 23 Jun 2021 at 14:28

Well finally start my treatment today with 4 weeks worth of Bicalutamide 50mg. Appointment booked for in two weeks for my 1st injection.

User
Posted 01 Jul 2021 at 23:04
That's good - you have a plan in place, your oncologist isn't one of those '3 years HT' advocates and 20 fractions of RT has been shown to be at least as effective as 37 fractions but with fewer side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 03 Apr 2021 at 09:21

Hi Jonno

That is a good detailed write up. I think with a family history like that it is wise to be having regular psa tests.

Mistakes on typing up results can happen, I had a slight issue with some of my results, it would take up half this post to explain what went wrong so I won't go in to detail. From what I discovered it seems the test machines are all pretty much automated so not very much room for human error, though it definitely happens occasionally. I'm glad your GP has asked for a retest, that is the first thing to do.

As you know from family experience this is a very treatable disease. You will just have to go through the diagnosis process and see what happens. Keep posting, keep us informed, ask any questions. 

Dave

User
Posted 04 Apr 2021 at 08:13
With your family history even if the PSA test comes back at 1.1 I would be nagging for an MRI.
User
Posted 08 Apr 2021 at 17:20
Quick update

PSA level has come back this week as 10.6 so it has dropped however GP still not happy because of family history so he has referred me to the hospital.

User
Posted 08 Apr 2021 at 18:24
Very sensible. A PSA that high certainly requires investigation.

Best wishes,

Chris

User
Posted 20 Apr 2021 at 16:40

I was seen today at urology where the consultant performed a DRE and he commented that he could feel a lump on the left hand side of my prostate. I now have an MRI booked for Thursday morning and then possibly a biopsy once he has seen the results.

User
Posted 24 Apr 2021 at 14:53

MRI scan done on Thursday morning had phone call Friday lunchtime inviting me in for biopsies on Tuesday morning. I know they do things quickly but is it normal for it to be this quick?

Edited by member 24 Apr 2021 at 14:54  | Reason: Not specified

User
Posted 03 May 2021 at 11:06

Biopsies were taken last Tuesday and I have a telephone appointment on the 13th to discuss the results 🤞

User
Posted 13 May 2021 at 11:07
you are doing the right thing by getting yourself well informed so that you can have some control in what is going on.

Good luck,

User
Posted 13 May 2021 at 17:11

Originally Posted by: Online Community Member

Biopsies were taken last Tuesday and I have a telephone appointment on the 13th to discuss the results 🤞

Hope consultation went well and you can update us.

Barry
User
Posted 13 May 2021 at 17:56

Well it has been confirmed that I have PCa with a Gleeson score of 7(4+3) in left hand side. 3 of 4 cores anterior 3+4 and 6 of 6 cores posterior 4+3 longest length 15mm. MRI also showed 1 possible lymph node as enlarged so now awaiting a CT scan and bone scan hopefully within the next 2 weeks. Then they will let me know what treatment they are going to offer me.

Edited by member 13 May 2021 at 18:42  | Reason: Not specified

User
Posted 14 May 2021 at 01:16
Not the news you wanted but were likely expecting a PCa diagnosis. At least things have moved quickly and appropriate treatment will be offered after the last scans are done.
Barry
User
Posted 18 May 2021 at 19:47

Had CT scan yesterday evening and bone scan is booked for next Monday. 

User
Posted 25 May 2021 at 18:38

All scans now done so a waiting game again until I'm discussed at the next MDT meeting. Does anyone know on average how often these meetings take place?

Then I will probably be offered the treatments available to me.

User
Posted 25 May 2021 at 20:37
Pre covid the MDT meetings in our neck of the woods were once a week. i don't know whether they have changed or not. We missed the first weekly one by a day or so but got in on the following one. So it won't be too long.
User
Posted 25 May 2021 at 20:45

Thanks Littlewren 👍

Just hope the meetings are not on a Monday as next week is a bank holiday 🤣

Edited by member 25 May 2021 at 22:13  | Reason: Not specified

User
Posted 28 May 2021 at 07:55

I recieved an unexpected call from my consultant yesterday evening to let me know that my bone scan has come back clear but, they are still unsure about the 1 lymph node. She has now requested a PET scan to confirm either way. She also informed me that the recommendations of the MDT were HT/RT either way which I was starting to lean towards as a treatment path.

User
Posted 28 May 2021 at 13:32
Those sudden unexpected calls certainly raise your heart rate don't they?

Good they are recommending your chosen treatment path. We had a choice of RP or RT...the MDT were prepared to do both. He wanted mothership out asap so we too were glad we got our personal choice.

Good luck with that PET scan, lets hope any suspicions are groundless but it's all good with the bone scan 👍

LW

User
Posted 28 May 2021 at 14:10
Hi Littlewren the old heart rate certainly did go up when I got the call but at least the worry about the bone scan is now gone. Hopefully the Lymph gland is also clear. I expect that they will start my treatment at my next consultation which should be within the next couple of weeks.
User
Posted 28 May 2021 at 17:15
You will feel much better and more proactive when treatment starts.

These weeks of waiting while you get your full diagnosis are the pits.

Take care

LW

User
Posted 28 May 2021 at 18:36

I must admit I can't wait to start treatment and hopefully put all this behind me. Which is probably the same as everyone else that is in and has been in the same situation.😁

User
Posted 29 May 2021 at 08:21
Everyone feels that way, I suspect. Like you I was strongly guided towards HT/RT when I was diagnosed three years ago. I didn't find treatment too bad at all.

Best wishes,

Chris

User
Posted 29 May 2021 at 08:46

Hi Chris hopefully I will find it not to bad.

User
Posted 02 Jun 2021 at 21:40

Well PET scan now done and telephone appointment with consultant two weeks tomorrow for the results etc. Starting to get used to the waiting now 🤣

Edited by member 15 Jun 2021 at 21:38  | Reason: Forgot to add weeks 🤦‍♂️

User
Posted 03 Jun 2021 at 10:13

Sending best wishes to you.

User
Posted 03 Jun 2021 at 10:19
Cheers Lexi.
User
Posted 17 Jun 2021 at 19:06
Had telephone appointment with the consultant today they are still not 100% certain about the one lymph node so going to treat it as if it is. I have chosen HT and RT so she is sending out a prescription for bicalutamide(? think that's the correct spelling) for four weeks worth with an injection (did not say which one) at GP's after two weeks. Oncology appointment in about 4 to 6 weeks to discuss RT but she did say 4 weeks worth so probably 20 fractions. Obviously I will imagine that the oncologist will confirm that when I see them along with whether they treat just the prostate or the whole pelvic area.
User
Posted 18 Jun 2021 at 22:46

Hope all goes well for you as you start towards hormone therapy.

Ido4

User
Posted 19 Jun 2021 at 07:46

Cheers Ian

User
Posted 23 Jun 2021 at 14:28

Well finally start my treatment today with 4 weeks worth of Bicalutamide 50mg. Appointment booked for in two weeks for my 1st injection.

User
Posted 29 Jun 2021 at 20:29

Well I've been on bicalutamide for almost a week now felt knackered a couple of days but not sure if that's my body relaxing now that my treatment has started, or the fact that my middle son and two grandchildren are living with us 😆.

I have a telephone appointment with my oncologist on Thursday afternoon so hopefully will know how many fractions etc I'm going to be having etc.

Also having checked my patient access app and I'm down for Prostap injections starting a week tomorrow.

User
Posted 01 Jul 2021 at 21:28

Spoke to Oncologist tonight who confirmed HR for at least a year and 20 fractions starting probably early October.

User
Posted 01 Jul 2021 at 23:04
That's good - you have a plan in place, your oncologist isn't one of those '3 years HT' advocates and 20 fractions of RT has been shown to be at least as effective as 37 fractions but with fewer side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jul 2021 at 06:21
Thanks Lyn
User
Posted 24 Sep 2021 at 18:43

Sorry for the long gap between posts but life/work has kind of got in the way. Started HT (prostap) back in July with a monthly injection going over to the 3 monthly one in August. Had my planning appointment for RT on the 13/9 but it didn't go to plan as bowels were full so it was rescheduled for last Friday morning and it all went as planned. RT now starts on Oct 7th. I have found that I've been getting very moody or at least the wife has told me I have. Mainly just getting snappy and also very tired lately as not been sleeping properly for a few weeks now. I also get mild warm flushes nothing to bad thankfully.

 
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