1. Community
  2. Cancer
  3. Prostate Cancer

Just had first raised PSA test. Very raised and a bit worried

Posted , 11 users are following.

chris13067
chris13067

Hi all. Early days I know but I've just had the result of my first PSA test, performed under a routine health screen through my work scheme. I am generally in very good health and am fairly active. (Aged 54)

Over the last few years I urinate more frequently than I used to but haven't noticed any recent deterioration, I don't have to get up at night very often but control that to some extent by my fluid intake, usually a cup of tea around 2-3 hours before bed. I don't have any problem with going unless I leave it longer than I should and I'm bursting when I have to go twice in relatively quick succession in order to empty my bladder.

Other than these symptons, nothing at all. I had a DRE around 3 or 4 years ago and my prostate was deemed to be fairly normal, possibly slightly enlarged with a normal feel to it and a second DRE last week just after my PSA was taken was thought to be the same by a different doctor. I was asked if I wanted a PSA and understood the pros and cons and decided I would like to have one but the doctor phoned me today to tell me the results and gave me the bombshell that my reading was 9.48.

She has given me all of the usual reassurances about it being inconclusive and not to worry etc but I thought I would get some opinions from here after receiving some really good advice last year after I ruptured my achilles tendon! I'm not in any rush in trying to get a biopsy and am happy to wait for a second test in a month or two, I guess I'm looking for a flood of people who had equally high first readings and did not subsequently have PC diagnosed. Any opinions or experiences gratefully received.

Thanks

0 likes, 44 replies

44 Replies

Prev Next
  • auntiebeanie
    auntiebeanie chris13067

    Posted

    Chris, my husband had absolutely no symptoms at all, I sent him to docs as he was complaining of back pain. Dr decided to test PSA as he was 62! Came back as 12, we were not too worried. Had MRI and Biopsy. Came back with cancer but it was thought could be active surveillance, however further biopsy found more aggressive cancer in the anterior part. Due to where it was, he was not suitable for brachytherapy, HiFu or any other treatment apart from removal of prostate. He had op a month ago. Done using a robot and recovery has been very good. In the 8 weeks he waited for the op whereas they thought they could save both sets of nerves they could only save one side. Still got incontinence issues but that will improve. To us there was no other option than surgery and we took it. If you have PHI then at least whatever you decide will take place quickly although if surgery it has to be at least 6 weeks after biopsy as the prostate is too sticky to remove. Fingers crossed all will ok x
  • ES28567
    ES28567 chris13067

    Posted

    You have received some excellent advice here. 2Light1 nailed it! Also, if the DRE was performed prior to the blood draw, that too is thought to cause an higher PSA score. Although it sounds like the PSA test was done first in your case.

    Be proactive and find out exactly what you are (or are not) dealing with. It could just be an enlarged prostate. But the sooner you know, the more options you will have.

    PCA3 test is very good advice and also a 3T MRI if needed.

    Im not a doctor but here would be my action plan based on my experience and knowledge if I were you.

    1). In 30 days, do another PSA or PCA3 test. (If you do another PSA test, the same lab needs to test the blood so you get a consistent testimg method.

    2). If the results still come back high, get an MRI (insist on a 3T MRI which will give the best images) to see if there are "areas of concern".

    3). If there are "areas of concern" on the MRI images, then I would recommend a MRI guided biopsy. This is important because a "random" biopsy could miss cancer and give you a false negative result and a false sense of security.

    4). If the MRI comes back with no "areas of concern" then your problem is probably just an enlarged prostate and you can look at solutions such as medication (I'm not a fan of pills as the results are usually temporary) or other remedies such as PAE or Urolift or a few other options.

    If the next PSA comes back low (because you are having prostate issues) I would still press for an MRI anyway.

    If your urinary problems are only because of an enlarged prostate, I highly recommend against TURP or Green light laser which will be the first words out of your urologist mouth. It's what they do and how they make their money and they will, in most cases, poo poo other options. They may even tell you that you "don't qualify" for a certain procedure. Don't listen to them. Let the surgeon who performs the procedure tell you if you qualify or not.

    Number 1 rule... BE YOUR OWN BEST ADVOCATE. Research, Research, Research. Know all the side effects associated with any procedure you are considering regardless of it is just for enlarged prostate or prostate cancer treatment.

    Number 2 rule... DON'T take the opinion/advice of just one Urologist get several opinions.

    Number 3 rule...DON'T panic if it turns out to be cancer. In most cases there is time to research and determine what is the best course of action for your individual case. There are a number of viable options other than a prostatectomy. I ended up with cancer but the procedure I chose killed the cancer and left me with no side effects. It's like it never even happened.

    You probably will only get one chance to do this right regardless of if it is cancer or just an enlarged prostate and the path you choose may impact urinary control, retro-ejaculation, the ability to have erections... its important you do your research.

    • Light1
      Light1 ES28567

      Posted

      Hi ES28567, Thanks for the post. Can you share which procedure you chose? Thanks!
    • chris13067
      chris13067 ES28567

      Posted

      Hi ES28567.

      Thank you so much for taking the time to post this really useful info. I'm currently at work so not able to do my reply justice so will do so later. The symptoms I have are really not an issue and I can happily live with them so i don't think I need to consider some of the aggressive treatments just yet if I'm lucky enough to be cancer free. Great advice about the options though thank you so much.

      Chris

    • ES28567
      ES28567 Light1

      Posted

      Hi Light1,

      I opted for the HIFU procedure for several reasons. First, HIFU has been performed (and improved upon) for over 12 years in many countries (but not the USA) so it's not completely new and has some history on the results. Second, I am not a big fan of any type of radiation therapy (unless the cancer has metastasized) because eventually (5 to 10 years) you end up with the same ED sexual side effects as a prostatectomy and they are not reversable. You can also end up with bladder issues and/or bowel issues. My cancer was isolated to the prostate, Gleason 6 in one area and precancerous in a second area. With the exception of the location (which made it more likely to metastasize) I would have been a good candidate for active surveillance. If the results had shown the cancer to have metastasized, then Proton therapy (radiation) would have been my first choice if I could afford it.

      Having read all the possible side effects of a prostatectomy (incontinence, ED, shorter penis) I also wanted to avoid that procedure as well.

      I had no cancer symptoms (such as prostate pain or lower back pain) just symptoms of a large prostate. So I did a PSA and DRE. The DRE indicated a large prostate but no abnormal areas. The PSA came back at 18.5.

      So here is why is am so strong on getting more than one opinion...

      Inspite of my high PSA score, my first urologist said he did not think I had cancer and the high score was simply due to having a large prostate. His recommendation was to do Greenlight laser and I would be "peeing like a teenager again". (He neglected to tell me that Greenlight laser causes retro-ejaculation). I felt pretty good leaving his office thinking I didn't have cancer. He scheduled me for a cystoscopy and it confirmed I have a large median lobe which was causing the urinary issues and he wanted to schedule me for the Greenlight laser. Well, between the time I left his office from the initial consultation and having the cystoscopy I researched the Greenlight laser and side effects. I wasn't to keen on having retro-ejaculation the rest of my life and the high PSA score was still nagging at me inspite of my urologists "professional opinion".

      So, I went to a second urologist. He said I should do the TURP to take care of the urinary issues and not the Greenlight because it could cause damage to my bladder. When I raised my concern about the high PSA score, he immediately said you can't tell much from a cystoscopy and he wanted me to schedule for a biopsy. I agreed to the biopsy but only if an MRI showed areas of concern and the biopsy must be targeted. The MRI showed 4 areas of concern. The targeted biopsy showed one area of cancer and one area precancerous.

      So, had I followed the advice of the first urologist, I would be peeing like a teenager but still have cancer growing in me and possibly metastasizing! That's why I am so adamant about getting more than one opinion.

      In my consultation with the second urologist (after the biopsy) he told me rather coldly that I have cancer and his recommendation was a prostatectomy. He made it sound routine and that he had done lots of them and at my age my recovery should be pretty easy. Well what he didn't know was I has called the hospital and had already gotten my results and knew I had cancer. I had done my research before my consultation. I asked him about the side effects and he (only then) admitted that I would have some incontinence issues "for a while" and that I would be impotent for 6 months to two years. At the time, I didn't know about it causing a shorter penis (and funny thing...he didn't mention it).

      I asked him about checking to make sure the cancer had not spread before we did a prostatectomy he then offered to schedule a bone scan. So I'm thinking to myself...why did I have to bring that up? Why didn't he suggest we make sure it has not metastasized? Isn't he supposed to be the professional and be looking out for me?

      That's why I'm so adamant about being your own best advocate.

      Lastly, trying to avoid radiation and a prostatectomy I ask him about focal laser ablation (FLA) or as a last resort, Proton therapy. He said my prostate was too large and I wouldn't qualify. His exact words were "A prostatectomy is really your only option". Turns out, I did qualify for both the Proton therapy or FLA or HIFU.

      That's why I'm so adamant about only letting the doctor who does the procedure tell you if you do or don't qualify.

      I hope my story helps others to understand how important it is to be strong for yourself, and to question everything and everyone (even the "professionals"wink.

    • chris13067
      chris13067 ES28567

      Posted

      Thanks again for another very informative post! I have been doing quite a bit of research and will definitely be following your advice and carefully considering every option at every stage. I have already booked another PSA test for a couple of weeks time and will see how that goes before deciding. I've been going through every emotion possible thinking about every eventuality but currently feel quite lucky that I have recently had a promotion to a higher grade which qualified me for a full health assessment othwise I may have been none the wiser that I MAY have a problem. I would hope that I have given myself every chance of beating whatever I may or may not have, I know that's not a foregone conclusion but hopefully things are at an earlyish stage. Thanks to everyone for the advice so far.

  • derek51088
    derek51088 chris13067

    Posted

    Hello Chris just read your post,your PSA reading was 9.48.I was the same age as you you when i had my first PSA test the result was a reading of 8.7.After 3 more blood tests later over a period of 6 weeks the PSA was rising very slowly. I was dianosed with PC during july 2012.I opted for AS.for the next 4 years,with my PSA reading in may 2016 was 13.7.Even with this elevated reading there were no symtoms at all.i was peeing more usual because my prostate was enlarged.What you must realise a reading of 9.48 is quite high,but till below 10.Try not to get to stressed,easier said and done i know, been there.Had Prostatectomy august 2016,4 months as passed since operation.Had good news yesterday from my urologist my PSA is now 0.075.Good luck,
    • Roger2Dodger
      Roger2Dodger derek51088

      Posted

      derek51088,

      You indicated in your post you were on  AS for 4 years. I am currently on AS. I was diagnosed with PCa in March of this year.

      Do you mind I ask your age and Gleason score in 2012, and when you went for treatment had the cancer escaped the caspule?

      I just had a PSA reading and mine has elevated from the inital diagnose. Not getting stressed and having anxiety is not easy. I am going for a Guided MRI biopsy in January, and then get some sort of  treatment.

       AS, in my opinion just makes each and every day more stressfull. Going for treatmemt ASAP.  I have been told at age 76 I will more than likey die from something else beside PCa, and just not worry about the PCa, well that might be true. But, I want ease of mind that the cancer is no longer in my body. Then live until the inevitable, what ever that might be. 

      Roger

       

    • chris13067
      chris13067 derek51088

      Posted

      Hi Derek and thank you for sharing your experience and for the kind words of encouragement! You are right a high PSA reading isn't a death sentence and I don't need to panic yet but I'm now starting to link other symptoms, probably unecessarily. I had a really bad back about a month ago and assumed it was muscular/ spinal and although it's much better now I do still have a very slight ache and stiffness which seems to be hanging around. I have a second PSA test booked for 19th December and will follow the guidelines properly this time, no cycling or sex before this time! Do you nmind if I ask how things have been since the prostatectomy? Are you still suffering from any of the dreaded side effects? Great news that you seem to have beaten the PC though. It might be a daft question but can you still get high PSA readings after having the prostate removed? Isn't it the prostate that produces PSA? Or does that continue to be produced by the cancer wherever it may have spread to? Thanks again for the kind words.

    • derek51088
      derek51088 chris13067

      Posted

      Hello Chris.Read your post,it's just human nature,i did exactly the same thing,my back was also playing up sending your mind into overdrive.In the end it was just a pulled muscle.As for the dreaded side effects,erectile disfunction,and incontinence,improving all the time.When i had my operation my PSA was 13.7.So when i had my surgery the Lymph nodes were also removed,due to high PSA reading.During this time they took a sample of the prostate bed,(where the prostate sat) also the lymph nodes are also analized in the Lab.Good news on that front no cancer found in the prostate bed or the lymph nodes.In some cases there are still traces of PSA in the bed.Not a high reading but further treatment will be needed.I am taking Cialis (viagra) for erectile problems,getting better but could take upto 18 months for things  to improve.As for incontinence it as been 4 months since the op and last week was the first time without wearing a pad.Still not back to normal but getting there.If you want any more info on my experience on the prostatectomy let me know.Try not to stress too much.Good luck

    • derek51088
      derek51088 Roger2Dodger

      Posted

      Hello Roger.My PSA in 2012 was 8.7.After 4 years of AS.it was 13.7.Thats when i opted for surgery.The cancer had not left the capsule,even after 4 years of AS.It was a very slow growing cancer.Out of the 12 samples taken at in 2016 at the biopsy.3 were positve for cancer.Roger if your urologist says you would die of something else before prostate cancer,i believe he is correct.Roger if i was 76 and had a reading of 8.7,at my first biopsy i would stay on active surveillance.I had a biopsy at 2 year intervals.The only reason i opted for treatment was my age i am 58.Every one is different i was able to cope knowing that i had cancer,but i know you think about it everyday.If the stress and anxiety becomes to much go for treatment.If you want to know about my prostatectomy let me know.Good luck
    • Roger2Dodger
      Roger2Dodger derek51088

      Posted

      Derek, thanks for the reply.

      I would probably reconsider staying on AS, but my Gleason was a 4+3=7.. so, that is my deciding factor to get treatment. My guess of treatment will be radiation. EBRT, Cyber knife or Brachy thearpy.

      At your age, You made the right decision on treatment. My age is a different story. Like you said every one is different.

      G'Luck to you going forward.

      I might add, this forum is awesome, great support and people.

      Roger

  • chris13067
    chris13067

    Posted

    Hi all, bit of an update. I had another PSA test so less than 3 weeks since the last one and this time because I knew what I was having done I avoided cycling and sex and apart from that my only other action has been to reduce my caffeine intake. Anyway, I phoned for the result today (my GP surgery this time so a different lab) and my reading is now 5.61. Now I know that is still pretty high but hugely encouraging or at least I think so.

    My GP left the message to say do nothing for now and retest again in 3 months which I am prepared to do but do you think I should still be trying to get PSA3 or 3TMRI scans in view of this big drop? I could always use work PHI and see what I can get there? I don't think it's unresonable to see what the next reading is to see if the drop I've just had continues, I suppose it's possible I just had an infection? I do have an appointment with my GP on 3rd Jan, he was my GP since I was around 17 and retired for a couple of years but coincidentally I got booked with him as a locum and is someone who's judgement I trust. My only fear is that he may not be up to date with the latest research and treatments. Any advice really appreciated as always.

    • Roger2Dodger
      Roger2Dodger chris13067

      Posted

      chris13067,

      Keeping informed on every discussion, sometimes one loose on the details.

      You are doing AS, same as me. I had a PSA test performed, and got the results a couple weeks ago. Mine went up from 5.88 to 6.87. My Urologist suggested I get another reading in 3 months. I told him that did not work for me. I told him I was tired of worrying about my cancer, just because of my Gleason score of 7... 4+3=7. A Gleason score of 7 is one of reasons treatment needs to be considered. Stage, and PSA are the other two. So, I elected to have a MRI guided biopsy on Jan. 6 ,and I will go for second opinion on Jan. 13. I am considering treatment after the results.

      Prolaris did genetic testing on my TRUS biopsy and their results showed non aggressive cancer. That is why I chose AS. After I get my second opinion,and biopsy results, then I will just make an informed decision going forward.

      I am telling you my story, so you can possible help you on your decision making.

      Roger

  • chris13067
    chris13067

    Posted

    Hi all

    I have a further update on my situation, had a further PSA test a few weeks ago which came back at 8.1 which was significantly higher than my last reading but lower than the first. It was enough for the urologists to recommend an MRI which i had a couple of weeks ago and I just heard back from them saying there is a small area of concern which i am gutted about. They have booked me in for a TRUS biopsy and I received the appointment this morning, it's for next Friday. Without any discussions with the urologist I'm feeling a little bit out of control with the treatment being offered, should I postpone the biopsy appointment and insist on a PCA3 test or go private to get the benefit of some more information and maybe an MP MRI? Or do I just put my faith in the consultant and have the biopsy? They have been quite quick with arranging the MRI and biopsy which i guess is good with the state of the NHS these days but i cant help wondering whether i should avoid the biopsy for now?

    Thanks in advance of any advice. Chris

    • caz11527
      caz11527 chris13067

      Posted

      Hi Chris. I know this is not what you wanted to hear but  from everything I have read over the months I gather that PSA will steadily increase with Pca and not fluctuate. As yours has been up and down I would look on that as a positive. My partner had a 3T MRI which showed no areas of concern but he couldn't settle until he had a TRUS as well. It was also clear. His free PSA was slightly higher than it should have been but he has been shown to have no Pca. The biopsy itself wasn't anywhere as bad as he had expected. It's the 3 week wait that's the worst. I don't think you should postpone it, the consultants are very experienced and if they feel it's the best option then I'd go with that. If your MRI was a normal 1.5 tesla I'd maybe try the more advanced 3 tesla. It is more accurate and detailed. Good luck with whatever you choose. I know lots of people will be along to share their own experiences.

    • charles61038
      charles61038 chris13067

      Posted

      I agree with Caz - you probably should go ahead and have the biopsy done and have it over with. Sometimes the waiting and not knowing is worse than the situation. The biopsy should tell you one way or another if there is cancer present. Then you can either stop worrying, or make a decision as to how you want to procede with a treatment plan. There are many treatment options that will work for you. I wish you all the best. Charles
    • chris13067
      chris13067 caz11527

      Posted

      Thanks Caz. I suppose what I'm worried about is having a biopsy without really having any opportunity to find out what they have seen and how clear is the image. If I insist on a MP MRI would that be a better basis for going ahead with a biopsy? It's a shame they have come up with an appointment so quickly in some ways! For me to have either a PCA3 or MP MRI i would have to postpone my biopsy. How likely is it they will be able to take samples from the area of concern? Will it be a bit of a lucky dip and is that more reason to insist on the more detailed scan first? Thank you for sharing your your partner's experiences and for your good wishes.

    • chris13067
      chris13067 charles61038

      Posted

      Thanks Charles, this is a tough can for me, I'm not unduly worried about the pain or discomfort of the biopsy, just want to make sure all other options are covered before disturbing the prostate with what is a pretty invasive and damaging procedure. I think i will try and call on Tuesday and see what I can do.

    • caz11527
      caz11527 chris13067

      Posted

      Hi Chris. If you are located in the area of a 3T scanner then maybe you should ask your consultant if you can have this scan first and hold off on biopsy for a few weeks. If you sort of put it to them like you want them to have the best "map" possible to biopsy then they may be happy to carry this out. We had to pay as it's quite expensive on NHS but ours was around £200 in Dublin. It does act like a map, they look at the images and when they enter the prostate they know exactly where they are taking samples from. This would most likely reduce the number of samples needed from healthy areas too. Its unfortunate that it's bank holiday weekend and you can't act on any of this until Tuesday but I'd give them a call and see what they say. If you go ahead on Friday with the biopsy I hope it all goes well. My partner was feeling fine the next day. It's the mental stress of the upcoming procedure that's tough but honestly it wasn't bad for him at all. x

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.