Very worried not sleeping

User

Posted 09 Nov 2024 at 15:58

Hi all I'm Peter

I've had my mri scan results which I have two lesons one 17mm just out the capsule a t3a, and a 2mm one on the other side.

My psa is 7.7 my psa density is 0.1 in the report I have a 69.9% chance of prostate cancer.

I had my biopsy Friday and have a cat scan on the 22nd November, specialist said if every is OK in scan they hope to cure it

I'm really worried that the time in-between mri scan and cat scan the cancer could spread to other organs or bones,I get biopsy results this coming Friday is there anything I should ask ? Could someone more qualified than me give me some helpful information.

Thanks

Peter

User

Posted 09 Nov 2024 at 19:45

Hi Peter.

I'm sorry that you've had to join us but welcome to the forum mate.

Your MRI scan has found suspicious areas. Your biopsy will target these areas plus some random areas, and will shed light onto whether you have prostate cancer, and if so, how aggressive it is likely to be.

The period between the biopsy and you scan will make very little difference to any possible disease progression.

The good news is that your PSA is relatively low. Did the MRI report give the size of your prostate?

I know it's a frightening time mate but try not to worry. Instead focus on each procedure. If it's anything untoward you'll soon be treated.

Your anxiety will affect your sleep, it's bound to. When you know exactly what your condition is and a treatment plan is made you'll feel a lot more relaxed. The uncertainty that you are now facing was the worse part for me.

Good luck mate with your biopsy results and further scan. Please keep us updated. Folk on here will do their best to help, support and reassure you.

Edited by member 09 Nov 2024 at 19:51 | Reason: Additional text

User

Posted 09 Nov 2024 at 20:22

Thanks Adrian it's much appreciated I'm definitely a worrier, yeah gp told me I have a enlarged prostate and also said I'd have nothing to worry about from the ultersound which only mentioned the enlarged prostate to be fair.

Regards

Peter

User

Posted 11 Nov 2024 at 17:50

I think PSA Density means PSA per unit volume of prostate.

Some experts believe that it is in principle a better diagnostic measure than PSA alone. The reason for this is that, other things being equal, you would expect that a man with a large prostate will produce more PSA than a man with a small prostate even if both do not have cancer. So PSA density tries to allow for this by measuring PSA levels relative to prostate size. That does of course rely on having a reasonably accurate measure of prostate size (eg from MRI) which is not always available.

User

Posted 11 Nov 2024 at 20:05

I would think that the biopsy and MRI would be the main diagnostic tools, and the PSA density would be a supplementary indicator.

If you are interested in understanding more about PSA density here is a link to a video by Dr Scholtz (who has produced a lot of useful PC videos, but bear in mind that he works in the USA.)

https://www.youtube.com/watch?v=8eas3h1_Lc4

User

Posted 11 Nov 2024 at 20:16

Hi Pete.

I wouldn't bog yourself down with too many mathematical problems. PSA is just an indicator, it's not set in stone. There are cases of men with high PSA who've haven't got cancer and others of those with low PSA that have got aggressive cancer. Having said that it's the best we've got. Yor PSA is relatively low, as is your PSA density, which generally bodes well.

Your biopsy will target and take samples from the areas the MRI has found suspicious, it will also take random samples from other areas of the prostate. These samples will be analysed and graded with a Gleason score. It is only then that you'll get an idea of how aggressive any cancer is. However, even biopsies aren't an exact science, they can miss more serious cancer cells and to a degree they are open to interpretation by the person examing the samples.

As I said before, just take one procedure, one result at a time.

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User

Posted 09 Nov 2024 at 19:20

Hi any advice would be much appreciated

Thanks

Peter

User

Posted 09 Nov 2024 at 19:45

Hi Peter.

I'm sorry that you've had to join us but welcome to the forum mate.

The period between the biopsy and you scan will make very little difference to any possible disease progression.

The good news is that your PSA is relatively low. Did the MRI report give the size of your prostate?

I know it's a frightening time mate but try not to worry. Instead focus on each procedure. If it's anything untoward you'll soon be treated.

Good luck mate with your biopsy results and further scan. Please keep us updated. Folk on here will do their best to help, support and reassure you.

Edited by member 09 Nov 2024 at 19:51 | Reason: Additional text

User

Posted 09 Nov 2024 at 19:58

Hi Adrian

My psa density is 0.1 the prostate measures 49 ml ,just dreading the cat scan results, been prescribed sleeping /anxiety tablets but always find myself waking up really early with one thing on my mind, what makes it worse the GPs missed a psa reading of 3.4 back in 2018,

The positive so far mri report says normal lymph nodes normal pelvic area normal bladder and colon so not all doom and gloom,just worried about it spreading into other organs or bones.

Thanks

Peter

Edited by member 09 Nov 2024 at 20:09 | Reason: Not specified

User

Posted 09 Nov 2024 at 20:10

The 3.4 reading probably wouldn't have been actioned on its own so don't beat yourself up about that.

I'm assuming by "CAT" scan you mean a PSMA PET CT scan? That would ideal for accurate staging and it is something that is relatively new and definitely worth having. The 2 week wait will not impact your risk. So try and use the wait time to better understand this disease and what your options are likely to be.

User

Posted 09 Nov 2024 at 20:13

Hello again mate. Your prostate is enlarged. It's normally about 30ml. Just enlargement can cause elevated PSA . Your PSA reading in 2018 was only just in the abnormal range. The fact that it has taken 6 years, to only rise as high as it is now, also bodes well.

I had sleeping problems and my GP refused to prescribe sleeping tablets. I was a bit of a worrier, so I do know how you feel, but honestly mate, I've learnt that worrying is pointless.

Keep accurate records, or even better ask for copies, of your biopsy and scan results. Keep us informed and we'll help where we can.

User

Posted 09 Nov 2024 at 20:19

Hi ya

That's all I've doing with waking up really early is reading up on the evil disease ,not in a brilliant place with lack of sleep,I can imagine everyone on here has been there.yeah sorry meant pet scan

Thanks for the reply

Peter

Edited by member 09 Nov 2024 at 20:27 | Reason: Not specified

User

Posted 09 Nov 2024 at 20:22

Regards

Peter

User

Posted 10 Nov 2024 at 08:31

Morning all

Just read with a psa of under 10 spreading to bones is very unlikely but with a p3a prostate cancer as long as it hasn't spread the odds are very good of not spreading, still a very scary thought especially with poor chris hoys diagnosis ,

A very worrying two weeks plus ahead till results of pet scan

Peter

Edited by member 11 Nov 2024 at 19:25 | Reason: Not specified

User

Posted 10 Nov 2024 at 08:54

Yeah, I was T3a with Gleason 9 (4+5) and it appears I had no spread.

Chris Hoys cancer announcement has certainly made more people aware of the disease. I bet GP have been inundated with prostate calls.

I seem to recall that many years ago there was a popular programme called TV doctor that each week discussed various ailments. I believe that it was taken off air, because the morning after broadcast GPs were being flooded by enquiries. 🙂

User

Posted 10 Nov 2024 at 08:59

That's good to hear hopefully it won't go anywhere for me to as hopefully slow growing according to the GP,

Will find out more Friday with biopsy results

Peter

User

Posted 10 Nov 2024 at 09:55

Hi Peter. I really feel for you. We really struggled when my husband was at the waiting stage. Whatever treatment is required, you will honestly feel much better mentally once it’s underway. My husband was PSA 24.7, Gleason 4+5, T3b - spread to seminal vesicles but no apparent spread any further. Although the oncologist described it as “aggressive and high risk” he is still very optimistic he can get rid of it with hormone therapy and radiotherapy. There is a chance micro mets could have reached his pelvic lymph nodes and not been picked up by the scans so his radiotherapy will include these. He only started hormone therapy early last month but mentally we are both in a much better place than when waiting for the results. From your results it sounds like you’ve caught it earlier than my husband so I hope you can be encouraged by his being “on a curative path”. Poor Sir Chris was less fortunate as his had already spread beyond the pelvis so the treatment choices were greatly reduced. The best advice I was given at your stage was for us both to actively seek out some fun things to do in the meantime. It really helped to lift our spirits and distract us, even though we didn’t think we were in the mood for lighthearted stuff so had to force ourselves!! Anything that distracts you and helps this time to go faster is a great idea! Take care and I hope you get started on treatment very soon. X

User

Posted 10 Nov 2024 at 10:08

Hi Kazzy

Thanks so much for your reply I know exactly what you mean by all this waiting it's awful, I'm very lucky to to have a wonderful partner who I'm driving mad at the moment.

Had biopsy Wednesday results Friday pet scan 22nd November so the waiting is horrible,

Hope your husband is doing well as I'm hoping for the radiotherapy hormone treatment for me as my bladder is overactive as is and the operation seems to mess with the bladder more

Thanks again for your advice it's much appreciated

Take care

Peter

User

Posted 10 Nov 2024 at 18:35

Hi Peter,

Ive not been very active on here recently but welcome to the club that nobody wants to join😩

You go through all sorts of emotions when you’re diagnosed….shock, anxiety, anger(why me), sadness. But as time goes on and you come to terms with the disease it does tend to get easier.

I find that keeping active and busy, giving myself and my family lots of treats. find something you really enjoy and do as much as you can. Mine was eBiking, it was the one thing that made me smile…and getting exercise as well without exhausting myself.

Also there is so much support out there if you seek it out. for me Maggies has been my saviour, I go every week and meet with my fellow cancer men(and sometime women). It took me 6 months for my wife to persuade me to go but I was so glad she persevered as it completely changed the way I deal with this disease. I always feel so much better when I come out the meetings…the guys just ‘Get It’! And are so supportive.

Good luck on your journey!

Derek

Edited by member 10 Nov 2024 at 18:36 | Reason: Not specified

User

Posted 10 Nov 2024 at 18:42

Hi Derek

Thanks for your message, just waiting for the biopsy results on Friday and pet scan on the 22nd which I'm dreading the results as hopefully it hasn't spread as I had a psa of 7.7 and a psa density of 0.1 hopefully it isn't the case ,I'm just very worried of that getting the results consultation

Thanks for your advice I'll definitely look into it

Best wishes

Peter

Edited by member 10 Nov 2024 at 19:04 | Reason: Not specified

User

Posted 11 Nov 2024 at 17:39

Been reading up on prostate cancer and reading having a Serum psa off under 10 mostly rules out bone metastases in most cases ( probably nonsense)but can still happen in a very small % of cases ,I'm confused of my psa density of 0.1 is that to do with the size of the prostate or the procession of the tumor ,I'm very new to this so please bare with me

Kind regards

Peter

Edited by member 11 Nov 2024 at 18:22 | Reason: Not specified

User

Posted 11 Nov 2024 at 17:50

I think PSA Density means PSA per unit volume of prostate.

User

Posted 11 Nov 2024 at 17:56

Hi ya

Thanks for your explanation it's really appreciated, it's so much to take in reading up on it ,I do have a enlarged prostate so I'm slowly learning

Thanks again

Peter

User

Posted 11 Nov 2024 at 18:35

So would I be right in saying the only way of telling the rate of procession is the biopsy results ?,and what does a psa density of 0.15 mean when is mentioned as favourible please ?

Thanks

Peter

User

Posted 11 Nov 2024 at 20:05

I would think that the biopsy and MRI would be the main diagnostic tools, and the PSA density would be a supplementary indicator.

If you are interested in understanding more about PSA density here is a link to a video by Dr Scholtz (who has produced a lot of useful PC videos, but bear in mind that he works in the USA.)

https://www.youtube.com/watch?v=8eas3h1_Lc4

User

Posted 11 Nov 2024 at 20:16

Hi Pete.

As I said before, just take one procedure, one result at a time.

User

Posted 11 Nov 2024 at 20:55

Hi Adrian

Thanks for the information

I think your right I'll wait for the results of the biopsy on Friday, to much information frazzled my brain

Thanks again

Peter

User

Posted 15 Nov 2024 at 09:46

Hi all hope your all doing well,

Had my biopsy results

Gleeson score of 4+3 psa density 0.15 psa 7. 7

Pet scan next Friday which I'm dreading.

I'm 56 and and reading up on treatments I'd prefer the Beam radiotherapy and hormone treatment as I have a overactive bladder but is it most likely the urology specialists will recommended surgery as I'm under 60 ?

Peter

Edited by member 15 Nov 2024 at 15:32 | Reason: Not specified

User

Posted 17 Nov 2024 at 07:28

Hi me again

Another thing that's worrying me is I sometimes have some pain in my hips mainly the left hip which I put down to wear and tear as my right leg is bend after a accident where I tore my meniscus and my ligaments got stuck so right leg is not straight, nothing showed up on hips on mri scan which was good but I get a pain in my left thigh hopefully connected to hip pain which has been worrying me a dull ache

Mentioned it at the GPs who just said if anything it will show up in pet scan so wasn't concerned as he said highly unlikely cancer has spread has me worried though

Taking antidepressants anxiety tablets and valium to try and sleep but can't remember the last proper sleep I've had since being told I've two leisons on prostate on mri nearly a month ago, not after any sympathy as I know we are all going through it but has anyone got any recommendations for trying to sleep please ?

Thanks again

Peter

Edited by member 17 Nov 2024 at 09:17 | Reason: Not specified

User

Posted 17 Nov 2024 at 08:57

Originally Posted by: Online Community Member

Taking antidepressants anxiety tablets and vacuum to try and sleep but can't remember the last proper sleep

Be careful with the vacuum, some blokes have got 'stuck' and ended up in A&E!

Joking apart, I guess most of us, due to anxiety issues, have had difficulty sleeping. It is also common to blame every ache and pain on the cancer. Good luck with your scan on Friday. 👍

Edited by member 17 Nov 2024 at 11:34 | Reason: Typo

User

Posted 17 Nov 2024 at 09:16

Hi Adrian

Yeah paranoid with every little ache lack of sleep doing my head in ,scan I'm OK with just the results I'm dreading, valium useless for me ,made me giggle 😃 my typo

Thank you 👍

Edited by member 17 Nov 2024 at 11:41 | Reason: Not specified

User

Posted 17 Nov 2024 at 10:18

I had a particularly bad spell of worrying during diagnosis and rang the PCUK nurse. To sum it up she said take each step one at a time or you'll be thinking too much. That seemed good advice for a while, although it might have just been the ability to talk to someone. I had a Macmillan nurse who was very good if I rang although an extra opinion was good. I stopped reading on here until I'd had the op as some cases wound me up. The euphoria of having had the op lasted me through a while afterwards. Unless you've specific worries it's better to try to stop thinking too deeply.

To reinforce what someone else said once I got to see the surgeon it seemed things were really moving. Diagnosis can seem to drag on when you know you've got it and want to get on with it. So when I got the operation date I was like a boy going to a cup final, which I did at the age of 15 although they lost after being in the lead, couldn't wait and looking forward to it. So this might be the worst bit before it moves up.

User

Posted 17 Nov 2024 at 10:34

Hi Peter

Your not wrong at the moment the worrying is through the roof, got PET scan Friday which I'm cool about it's just the results that worry me as I can't get the worst case scenario out my head even though Psa is 7.7 density 0.15 normal lymph nodes normal pelvic area normal bladder and lower colon,GP has said highly unlikely to spread as well as the clinical prostate nurse who gave me my biopsy results she said its to rule out spreading, but obviously like everyone im really worried about the worst case scenario plus not been able to hardly sleep

I've look at treatment options in detail and so far the beam radiotherapy and hormone treatment are my preferred way to go

Thanks for your reply

Hope your doing well

Peter

Edited by member 17 Nov 2024 at 10:35 | Reason: Not specified

User

Posted 17 Nov 2024 at 10:54

I suspected you'd want RT. The good thing being you can have hormones quickly, if they offer them. I'd want them. You could probably start now even if just to ease your mind and especially if it was to take some time before RT.

User

Posted 17 Nov 2024 at 11:12

Hi Peter

Yeah I'll definitely ask ,but the urology team want me to meet the surgeons first then the radiotherapy team ,but I'm getting a head of myself as better wait for the results from PET scan which I'm dreading.

Thanks

Peter

User

Posted 20 Nov 2024 at 12:16

Hi all

Just found out yesterday from the clinical prostate nurse that 16 of the 30 cells from the biopsy aren't aggressive so hopefully it hasn't spread fingers crossed 🤞

Peter

Edited by member 20 Nov 2024 at 12:22 | Reason: Not specified

User

Posted 20 Nov 2024 at 17:46

Hi all

I ended up in hospital with gallstone pain Monday which was sorted quickly, as chest pain they done a full body blood test a chest x ray and all was normal as the doctor knew I have prostate cancer she offered me a full body bone blood test which I had which came back normal which i don't know how relevant that is, if any one knows I'll be interested to know, probably not that relevant.

Peter

Edited by member 20 Nov 2024 at 17:46 | Reason: Not specified

User

Posted 20 Nov 2024 at 19:25

A clear bone scan is certainly good news in itself since it means that no metastatic spread to the bones was detected. In my own case it was the first bit of good news that I had in this process and it meant that all options were "still on the table", to use the words of the nurse who gave me the results.

I think, however, that bone scans will increasingly be superseded by PSMA PET scans, which do the job more thoroughly. Since you are having a PET scan soon I expect that the results from that will be regarded as more definitive than the ones from the bone scan, so let's hope that it gives you the same "all clear" message.

User

Posted 20 Nov 2024 at 19:37

Hi
I was given a full bone body blood test in A&E when I was there the results came back normal but probably not relevant to whether it will spread or not ,
Peter

Edited by member 20 Nov 2024 at 19:38 | Reason: Not specified

User

Posted 20 Nov 2024 at 20:01

Hi Peter

I think I am getting confused between a bone scan, which is what I had, and a "full bone body blood test" which sounds like it may be something different. If so I apologise for any confusion - I do not know whether the full bone body blood test is relevant or not. It remains true that your PSMA PET scan will be the best test for spread.

Best wishes

Kevin

User

Posted 20 Nov 2024 at 20:06

Yeah not looking forward to results at all for some reason I'm thinking the worst 😕 even though my GP and prostate cancer clinical nurse think it's very unlikely to.

Peter

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