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Surprised to be here

User
Posted 20 Oct 2016 at 23:28
Good evening everyone. A few weeks ago, the Lions Club in my area organised a PSA screening event for men 45 and over. I'm 46 and thought that there was hardly any chance I would have prostate cancer. Nevertheless, I thought I'd support the event and got a blood test. My PSA result came back as 6.2. I was told to see my GP. My GP repeated the test and it came back at 6.6. I was told I'd be seen by a urologist within two weeks.

That appointment happened today. The consultant told me he was concerned on two fronts. Firstly, I've had two tests done. Secondly, I'm young. He's sending me for a MRI and then a biopsy.

Maybe I am in denial, but this just doesn't seem 'right' in that I have absolutely no other symptoms. Maybe I need time to totally digest what is going on and posting on this forum is part of that.

As my title says, I'm surprised to be here. If anyone has any thoughts, please feel free to reply.

Walter

User
Posted 21 Oct 2016 at 15:13

Walter,
The order for tests can vary for different reasons. There are men for instance who believe they have piles or another problem and whilst the GP has his finger in the rectum feels the prostate to be other than it should and initiates a PCa test or there are circumstances where a PSA is done followed by a DRE before a man is referred to a hospital for biopsy and MRI or MRI followed by biopsy. Resources are limited and MRI and to some extent biopsy are not cheap, whereas PSA and DRE are, so these two checks are usually done before referring a man to urology unless there is an exceptional reason for referring to urology without doing a DRE and usually a PSA test too. However, there are no absolutes with PCa, there are differences between GP's and how they view PCa procedure and can operate under different guidance from respective commissioning bodies. There are at least 27 types of PCa and men can react differently to these and indeed to various treatment or combinations of treatment. An important factor also is how early a treatment is given. In short, PCa and the way it is treated is highly complex with results that are often unpredictable in terms of success and time. Because of this, it can be misleading to assume that because somebody else has had a good or bad response to certain treatment, that another man with similar diagnosis will be similarly affected by the course of the disease or treatment.

Meanwhile, from what you have told us PCa has not (yet) been confirmed in your case.

Barry
User
Posted 23 Oct 2016 at 11:16

I had no symptoms whatsoever. I only had a blood test for something else which flagged the PSA as high.My DRE was normal and my 1st biopsy came back as clear.

Now a year after the first test i have had the prostate removed and the results on the removed prostate came back as Gleason 9 and not 7 as the second biopsy showed. I still find it difficult to believe this has happened to me and if they were not telling me I had cancer i would never believe it. Life really does throw some curve balls at you.

User
Posted 25 Oct 2016 at 20:38
Thanks Sandra. Yes, I'm sleeping OK. In fact, I'm probably sleeping too much. I'm a teacher, so on half-term. I feel tired and withdrawn but don't think it's because I've got PCa, I think that even though I'm not actively worried, I'm still emotionally drained. Maybe I'm feeling a bit hard done by and need to get my act together. I haven't had a day off work for sickness in over ten years, so this really is bizarre. And now knowing that somewhere in a hospital images are going to be looked at to determine if I have cancer is a trial - waiting is hard.

I think I'm kind of using this forum as a diary to record my actual and emotional journey. Hope no one minds.

Walter

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User
Posted 21 Oct 2016 at 02:06

Hi Walter,

Welcome to the forum that we are all sorry for which there is a need.

Did you also have a DRE (Digital Rectal Examination) or to put it more clearly your prostate felt with a gloved finger through you rectum to check whether it was hard and or lumpy because just considering a moderately raised PSA for your age is insufficient to diagnose prostate cancer. There are other several reasons that could give rise to this, an enlarged prostate being just one of them. The MRI and biopsy may well shed more light.

Unfortunately, not all men with PCa experience symptoms and sadly men younger than you are sometimes diagnosed. In fact a new member has just been diagnosed aged 31. See http://community.prostatecanceruk.org/posts/t12135-Just-been-diagnosed--age-31--Gleason-6#post151575

 

Edited by member 21 Oct 2016 at 02:15  | Reason: Not specified

Barry
User
Posted 21 Oct 2016 at 06:57

Hello Walter
More and more young men are being diagnosed now with zero symptoms. Click my picture and read my profile. I was operated on aged 48 with a rapidly climbing PSA. My PSA had been 6 at your age though. You've definitely come to the right place though. So much help on here for you. Good luck with the scan and biopsy
Chris

User
Posted 21 Oct 2016 at 07:41

Hi Walter
Firstly welcome to the forum that non of us wanted to come to, but it is a great place for you to get support and hear other mens stories.

Maybe fate played a hand here and it was just fortunate that you went along to the event in the first place. I know in my case I had no symptoms at all, even after a DRE back in England in April 2015, and then in October 2015 after a blood test and a DRE something was found.

It seems in your case your raised PSA has been identified and that can only be good.

As ChrisJ said read his story and read mine too. I was also in denial and to some extent I still think I am even though I have had the operation and the prostate removed it still all seems like an unpleasant dream that I am living.

The MRI and biopsy will give a clearer picture, but remember the earlier this problem is detected the quicker and speedier will be your recovery.

Good luck and keep us posted

regards HappyH

User
Posted 21 Oct 2016 at 08:35

PCa is not an old mans disease as the many youngsters here will confirm.

Early diagnosis is important, if you wait for the physical symptoms to appear your a may be a way down the line.

Good that if there is an issue, it has been identified early.

Hope the tests give a clear indication for you.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 21 Oct 2016 at 09:48

Just to say welcome Ulsterman.

You've come to the right place for help and support

Early days for you yet and perhaps nothing sinister is there but better safe than sorry. I's not unheard of for men to be diagnosed yet have no symptoms, my husband being one of them (although he is a lot older than you)

Sandra
*******

We can't control the winds - but we can adjust our sails
User
Posted 21 Oct 2016 at 10:31
Thanks everyone for your replies. Two things surprised me about my consultation yesterday. Firstly, a DRE wasn't done - I'm straight off for a MRI and the biopsy. Should I have had a DRE? Secondly, the consultant didn't discuss other possible causes for my raised PSE. Does he just want to either confirm or eliminate cancer first rather than delay?

I'm in a state of confusion at the moment. Can't focus on anything. I'll put the kettle on and have a cup of tea - the answer to everything.

Walter

User
Posted 21 Oct 2016 at 11:09

I must admit I find it a bit different that no DRE has been done, the usual sequence of events unless there is strong medical evidence for going straight to an MRI, is DRE, ultrasound, Biopsy then MRI or MRI then Biopsy.

I think you need to go back to your consultant and ask why. This is the problem when you first hear the words Prostate Cancer or Tumor your mind goes blank, and you never think to ask what you need to. It happens to all of us, but i really think you need to clarify what and why your doctors is doing this. Remember it is your body and you are entitled to know what the doctor is doing and why?

Good luck

User
Posted 21 Oct 2016 at 13:58
Hello everyone

I've just spoken to one of the specialist nurses. She was brilliant. I know I am at the very early stages of my journey, but the specialist nurse's explanations and answers to my questions have given me peace of mind for the time being. I'm sure I'll be on a bumpy road, but possessing correct information is reassuring and empowering.

Walter

User
Posted 21 Oct 2016 at 15:13

Walter,
The order for tests can vary for different reasons. There are men for instance who believe they have piles or another problem and whilst the GP has his finger in the rectum feels the prostate to be other than it should and initiates a PCa test or there are circumstances where a PSA is done followed by a DRE before a man is referred to a hospital for biopsy and MRI or MRI followed by biopsy. Resources are limited and MRI and to some extent biopsy are not cheap, whereas PSA and DRE are, so these two checks are usually done before referring a man to urology unless there is an exceptional reason for referring to urology without doing a DRE and usually a PSA test too. However, there are no absolutes with PCa, there are differences between GP's and how they view PCa procedure and can operate under different guidance from respective commissioning bodies. There are at least 27 types of PCa and men can react differently to these and indeed to various treatment or combinations of treatment. An important factor also is how early a treatment is given. In short, PCa and the way it is treated is highly complex with results that are often unpredictable in terms of success and time. Because of this, it can be misleading to assume that because somebody else has had a good or bad response to certain treatment, that another man with similar diagnosis will be similarly affected by the course of the disease or treatment.

Meanwhile, from what you have told us PCa has not (yet) been confirmed in your case.

Barry
User
Posted 21 Oct 2016 at 15:35
Barry - you are right - PCa has not been confirmed yet. MRI next, then biopsy. Was very confused until I spoke to the specialist nurse. As she said, I'm on the conveyor belt and I'll find out in due course what's up.

Walter

User
Posted 21 Oct 2016 at 18:37
Hi Walter.

https://www.uptodate.com/contents/screening-for-prostate-cancer

Have a read . Or Google psa tests also check my profile.

Most probably absolutely nothing to worry about at all. Incidentally did you all get fully explained about the implications of the blood test. You may think by looking at my profile I'm very much pro psa testing .. not that simple. Yes as a base line .. In my cause it's probably saved my life or as a minimum given me a few more years.

I had zero symptoms. . DRE always negative. . Ie they can only feel part of prostate. I looked at PSA velocity. . and then asked for biopsy. I'm concerned that others in your group may have symptoms and a very low or 'normal' PSA value and think they are fine. Was this all explained. My cousin a Rotarian was recently discussing with me about the same however he did not realise the PSA test effectiveness as diagnosis. . Totally different for me and many others post rt or op as it then takes on a different emphasis totally. A biopsy is something not to be undertaken without full understanding of risks. I hope this helps. Finally were both your tests done without prostate 'activity' . Have you considered a 3rd psa test before proceeding. . My brother has psa of 18. BPH. And can go down to 3 and then back up etc. He is 69 years old. Has had MRI and DRE fine.

User
Posted 23 Oct 2016 at 11:01
I am now in two minds about the screening event, Robgsr. You're right - my reading is sending me down a pathway I didn't expect to be on and it has caused a certain amount of anxiety, but until I get my results, I'll try to to worry too much. My GP expressed his concern about the event too. But then, if I do have PCa, it will have been a good thing that the Lions did.

I have an appointment for 14 December with the consultant so I'm imagining my MRI and biopsy results will all be in by then.

Walter

User
Posted 23 Oct 2016 at 11:16

I had no symptoms whatsoever. I only had a blood test for something else which flagged the PSA as high.My DRE was normal and my 1st biopsy came back as clear.

Now a year after the first test i have had the prostate removed and the results on the removed prostate came back as Gleason 9 and not 7 as the second biopsy showed. I still find it difficult to believe this has happened to me and if they were not telling me I had cancer i would never believe it. Life really does throw some curve balls at you.

User
Posted 23 Oct 2016 at 21:46
Hi Walter

As long as issues explained then PSA is the best we have at the moment. Spot on..take your time and don't worry. .I assume you will have biopsy. . It will give a known baseline. Only cross each bridge as your need to. I've learnt a lot now understand a little more .. a very complex cancer to say the least.

Seeing Siampark post brings focus on how things can remain hidden. I have no'data' at all on my father, he was treated at Addenbrookes in 1974 . See my profile. From visit to GP to death was just over 18 months. He was fit and healthy and no health issues.

User
Posted 23 Oct 2016 at 21:55
Originally Posted by: Online Community Member

I had no symptoms whatsoever. I only had a blood test for something else which flagged the PSA as high.My DRE was normal and my 1st biopsy came back as clear.

Now a year after the first test i have had the prostate removed and the results on the removed prostate came back as Gleason 9 and not 7 as the second biopsy showed. I still find it difficult to believe this has happened to me and if they were not telling me I had cancer i would never believe it. Life really does throw some curve balls at you.

Hi Kevin

May I ask what PSA values did you have.. Were you diagnosed with 'std' PCa.. This seemed to have progressed fast... thankfully sorted in time. All the best...

User
Posted 24 Oct 2016 at 10:36

Originally Posted by: Online Community Member



Hi Kevin

May I ask what PSA values did you have.. Were you diagnosed with 'std' PCa.. This seemed to have progressed fast... thankfully sorted in time. All the best...

 

Never heard of std? My PSA was 8.9. Cannot remember off the top of my head what my 'free PSA`result was. I am now aged 55 and the only reason I discovered I had this cancer was that I live in Spain where they test  PSA in every 50 year+ male blood test.

I train hard in high temperatures and I had a blood test in 2014 when I felt run down and was diagnosed with anemia so I know my PSA was normal then. The year after, feeling run down again I had another blood test but the day after the test I felt fine so was not going to go and collect the results. It was only my son saying (ordering)I should go and see what the results were that I discovered the problem. The doctor only pulls up the results when you are sitting in the room with him so if I never went back I would not of known. It was a wake up call and thinking of how many men are living with this and not even aware of it is very scary. Hopefully I have been treated in time but only time will tell.

 

 

 

 

 

 

Edited by member 24 Oct 2016 at 13:35  | Reason: Not specified

User
Posted 24 Oct 2016 at 16:17
That's quick - only seen by urologist last Thursday and my MRI scan is tomorrow (Tuesday). Only ever hear of long waiting lists, so am surprised at the speed of things.

Walter

User
Posted 25 Oct 2016 at 17:41
Just been for my mpMRI. Non eventful, but for the first time this all started to feel real. Up until now, I've thought of it all as unlikely. Today felt real. Feeling tired, out of sorts and a bit grumpy.

Biopsy next, I believe.

Walter

User
Posted 25 Oct 2016 at 19:42

Both Biopsy and MRI can sometimes fail to reveal PCa and PSA indicate false positive and negatives. There are occasions where when a removed Prostate is examined in the lab the Gleason score and amount of cancer found is less than originally thought. However, where results are different from pre Prostatectomy assessment, it is more often the case that the Gleason figure is raised and or the cancer has extended further. Having said that, as men grow older more will have PCa knowingly or unknowingly but it will not develop to the point where it will become a problem. So although by pensionable age more will have PCa that not, most of them will die of something else. Efforts are being made to try to ascertain which men have cancer that needs treatment and those that could just be monitored. Where this is not clear, a man has to decide whether to opt for early treatment with potential adverse side effects or delay and hope his cancer does not become more advanced and that he acted too slowly. It can be a difficult decision.

Barry
User
Posted 25 Oct 2016 at 19:43

A lot has happened in a short space of time Walter and the fact that you had no symptoms makes it harder for you to understand why there is the sudden change.

It takes a lot of getting used to so feeling grumpy and out of sorts isn't unusual and tiredness can just be the result of the stress. Are you sleeping OK?

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 25 Oct 2016 at 20:38
Thanks Sandra. Yes, I'm sleeping OK. In fact, I'm probably sleeping too much. I'm a teacher, so on half-term. I feel tired and withdrawn but don't think it's because I've got PCa, I think that even though I'm not actively worried, I'm still emotionally drained. Maybe I'm feeling a bit hard done by and need to get my act together. I haven't had a day off work for sickness in over ten years, so this really is bizarre. And now knowing that somewhere in a hospital images are going to be looked at to determine if I have cancer is a trial - waiting is hard.

I think I'm kind of using this forum as a diary to record my actual and emotional journey. Hope no one minds.

Walter

User
Posted 25 Oct 2016 at 21:00
Hello. I thought I would add that my OH had no symptoms either. He went to the GP about something else. Had blood tests done, they also did a PSA test which came back as 3.7. Slightly raised. He had this prostate felt with no abnormalities. MRI showed nothing. Biopsy came back with a Gleason of 3+3

So I think it may be quite common to have no symptoms. I'm sure all the worry is draining you too. I don't think you can help it. Even if you feel that you aren't worrying. Sounds like you have a speedy hospital too which is helpful.

All the best.

User
Posted 25 Oct 2016 at 22:26

"I think I'm kind of using this forum as a diary to record my actual and emotional journey. Hope no one minds."

Of course we don't. We are a sounding board, a listening ear, a kick up the backside sometimes, but most of all supportive because we've all (to some extent) been there, done that and know what it's like.

Please never feel that you don't know where to turn. You found us.

Sandra

*******

We can't control the winds - but we can adjust our sails
User
Posted 28 Oct 2016 at 12:24
A quick update.

I had my mpMRI scan on Tuesday. Got a call from the hospital this morning telling me I have an appointment on 9th November. That's two weeks from the scan. I assume that will be to get the scan results and decide what sort of biopsy is needed, if any? Do you think if they haven't found anything they'll still do the biopsy? I'm 46, no symptoms, PSA 6.6.

Walter

Edited by member 28 Oct 2016 at 16:19  | Reason: Not specified

User
Posted 28 Oct 2016 at 15:58

In many areas, an apparently clear scan would still be followed up with a biopsy - my husband's scan was perfectly normal but the biopsy picked up G7. With a bit of luck, they are planning to do the biopsy on the 9th - did they say anything about it in the phone call?

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

User
Posted 28 Oct 2016 at 16:18
Lyn - I seem to be getting very quick service but it's all getting confusing. I am getting phone calls, texts and letters and now have 3 separate appointments coming up in two different hospitals and haven't got a clue what each of them is for. I've phoned the Macmillan Uro-Oncology Clinical Nurse Specialist at the main hospital and the urology waiting list coordinator but had to leave a message. Hopefully someone will call back today. It's just baffling not knowing what each appointment is for, and if one of them is for a biopsy, there are no instructions enclosed. I'm just one of those people who likes to know what's going on.

One thing I can't criticise though is the speed. It's only been two weeks since my GP did the PSA test and I've already had my scan. I think that's pretty impressive.

I haven't had any symptoms and I'm usually as fit as a fiddle. I haven't had a day off sick in over ten years. But this week, lower back pain. I've never had a sore back in my life. Is this a symptom, a coincidence or just me bring paranoid?

Walter

User
Posted 28 Oct 2016 at 17:46

Yes, it's not great when all the appointments come without any explanation. We knew what John was going to be told at his diagnosis appointment because the bone scan apointment arrived a couple of days before - oooops!

The back pain is most likely due to you being tense and/or not sleeping as soundly as usual.

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

 
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