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

Cancer
1

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

2

Hi Chris,

Yes, 9 is a bit high and I would definitely want to investigate further. However, I wouldn't necessarily jump right into a biopsy. First, I would get a re-test on the PSA. Don't have sex or masturbate or even ride a bicycle within two days of the test. If it comes back still elevated, ask your Dr. for a PCA3 test. This is a newer test for prostate cancer. They give you a prostate massage and then you provide a urine sample. Some insurance pays for it and some does not. The test is not as definitive as a biopsy but also doesn't have the downside risks of infection, nerve damage, "tracking", etc. And even if it turns out to be prostate cancer, don't jump right into surgery before doing some extensive research and coming back to this forum where you get the benefit of the experience of a lot of guys who have gone before you. Good luck!

3

Thanks for the advice and speedy response! I should have mentioned, I did have a 30 odd mile cycle 2 days before and an ejaculation the night before the test, is it possible this could account for such a high reading? I know now i shouldn't have done either of these things before the test and that it can affect a result but can it to this extent?? Should I avoid cycling completely now do you think? Thanks again.

4

Hi Chris

I would also be concerned with a PSA of 9.48. The good thing is you are not having any bad symptoms. My PSA was elevated at 5.62. I had no symptoms either. A DRE indicated slighly enlarged prostate - as my urologist said it was a 'normal large'.... He put me on antibiotics for a couple of weeks. My PSA went down a bit to 5.1 which I thought was good. However the urologist said that was not enough and suggested I have a bioplsy. Which I had a couple of weeks later. That is not a pleasant experience at all. He put me on antibiotics again - a few days before the biopsy, and continued a few days after. No infection resulted, but the biopsy showed 2 samples out of 12 to have cancer. He told me that it was a low risk, non aggressive cancer. So I had time to research my options as to what to do. I had also began having some discomfort sitting for long periods which I attributed to the biopsy. After about 2 weeks, I went back to the doctor because of the discomfort. He told me that I had developed prostatitus and gave me different antibiotics. Shortly, all was feeling back to normal. I do computer work, so I sit for long periods... now I was feeling better. After this regimine of antibiotics, he did another PSA and it was down to 2.1. But I still had the cancer cells. He said I could opt for active survailence and monitor the situation periodically - and get another biopsy in a year - and believe me, one biopsy is all I could handle. So I researched treatment options and there are many. I ended up having low dose seed implants - Brachytherapy. An outpatient procedure done on one visit. It has been 9 months for me now. I had a follow up at 6 months and my PSA was at 0.15. I will see him again at the year mark which will be the end of February. Your situation could just be prostatius or an infection of some kind. I would try a regimen of antibiotics to see it the PSA will go down. If you end up having to have a biopsy and it does turn out to be cancer - do research on options. There are many that will cure you and rid you of cancer. Good luck to you. - Charles

5

Get a PCA3 test, this test only looks for cancer. If it is out of wack then a 3T MRI would be my next step, in order to see if there is something to biopsy. PSA is a poor test at best for cancer. It doesn't rule out BPH or Prostatitis and any other thing that can increase PSA. So many things can increase PSA. PCA3 is specific to cancer.

6

Thank you for sharing your experience Charles and for the advice. I am certainly not going to rush into a biopsy. I will make an appointment with my GP and ask for another test, this time following all of the guidelines and rules prior to the test. Fingers crossed it's just a bit of a rogue result but I fear I'm clutching at straws! Thanks again for taking the time to comment. Chris

7

Thanks Craig, I will see if it's available and if not try and go through my PHI. Time for some more research i think! Your comments are much appreciated

Chris

8

Chris, I don't know how much these activities can raise your PSA. I think it is individual,  but probably significant. Yes, I would say abstain from all these activities at least 3 days before a PSA test.

9

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

10

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.

11

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

12

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

13

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.

14

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.

15

Charles,

I am presently doing AS., but I am going for treatment after my scheduled MRI guided biopsy in early Jan. I am interested in the Brachy thearpy. Removing the prostate is not an option. Radiation will probably be my choice.

My question would be,am I a candidate for Brachy thearpy . Are there any stipulations that you may know of,whereas that would disqualify one from this procedure?

Thanks!

16

Hello Roger. The only thing that would disqualify a person would be the size of the prostate. But they can reduce the size with medication.  It has to be within a certain size.  I have a friend that retired from the Cancer Research Center. She was a director of some sort and was knowledgeable about radiation therapies. She and I talked in detail about my options and radiation was one of them. She also directed me to one of her old co-workers that still works at what is now the START Center where they offer many treatments for many types of cancer. I met with the oncologist and he went over treatment options and explained the pros and cons and their associated side affects. We spoke about radiation beam - which was a nine week process, I believe of about  15 minute sessions. He said the side affects (and all have some side affects) would not happen until late in the treatment. Inflammation and fatigue would be the most notable side affects. Another option was the Cyberknife which is also radiation, but more focused to the area needed. I believe it was 4 fudiciary markers would be implanted into the prostate about 2 weeks prior to the Cyberknife procedure. Those markers help guide the radiation beam in order to cut the risk of radiantion damage to other surrounding tissues like the colon and bladder.. The Cyberknife would be 5 sessions at 45 minutes each. And I believe those would be every other day if I remember correctly.  He told me that prior to each session I would have to drink an amount of water to fill the bladder. And hold the water for the duration of the session. This was to hold the bladder aware from the radiation beam. The last discussion was the Brachytherapy. The only requirement for that was that the prostate had to be within a certain size range. Mine was slightly enlarged in the beginning of all this. I was put on the generic version of Avodart which is Dutasteride. That drug is prescribed for enlarged prostate. After 2 weeks of the Avodart, my prostate was in the correct size range. They have to do a 'volume study' which takes about 10 minutes in the office.They do a sonagram to make images of the prostate as to size and shape. They use that for the seed placement. 2 Weeks after the volume study, I was scheduled for the Brachy. That procedure takes about 45 minutes. After that, you are in recovery for about one hour - and when you pee for them a couple of times, you are released to go home. Ibuprofen helps with the inflammation...  good luck. Let me know how it goes with you. Charles

17

Thanks Charles for the information. I just wanted some information before I go for my treatment . I appreciate your detailed information, it gives me some knowledge to make a decision that suits me

I like the Brachy therapy, and the Cyberknife, not to keen on 9 weeks of radiation. Taking Ibuprofen is not for me, I am allergic to aspirin products.

If I have to go for the 9 weeks route, I will probably have to delay treatment until spring. Living in the Midwest in the winter time is impossible to make the treatment appointments every day due to winter conditions. Thanks again for your support and knowledge.

Roger

18

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,

19

Hi Craig, I'm interested in this PCA3 test. My partner (50) PSA 7.2, now 9.5 has been told by urologist consultant that he highly recommends a biopsy. Why would he not suggest the PCA3 test first?It has never been mentioned. Surely this should be the next step after high pSA if antibiotics don't help as its then unlikely to be BPH or prostatitis. Should he ask for this test before agreeing to biopsy. I think PSA is to be repeated after Christmas prior to biopsy appointment. We are UK based. Thanks

20

Hi caz,

I hope you don't mind me chiming in. You are correct to request a PCA3 test if the PSA still comes back elevated. However, you might want to just move forward and have an MRI scan done instead.

Here's why...if the PCA3 test comes back high, you will still want an MRI done BEFORE having the biopsy (more on this below). If the PCA3 comes back low or not definitive then you still don't have a solid direction. If you go for the MRI (and insist on a 3T MRI) the MRI will show if there are "areas of concern" or not. If there are no areas of concern you will at least know the size of the prostate and can look for other issues such as BPH. If the MRI does show areas of concern, then you essentially have a roadmap of the areas to do the biopsy. Without the MRI, the biopsy is blind (random) and can come up negative (false negative) even if there is cancer present. There can be "areas of concern" that are not cancerous but the only way to know is from the biopsy.

In my personal case, my PSA came back high both times. He scheduled me for a biopsy but I insisted on an MRI first and an "MRI targeted biopsy". Had the MRI come back clear I was going to cancel the biopsy and do the PCA3 test. Unfortunately, there were 4 areas of concern so I then agreed to move forward with the targeted biopsy. One area had one core 5% cancer, one area was precancerous, and the other two areas were non issues. Because I had such a small area of cancer, a blind/random biopsy might have come back as a false negative.

I hope you find this information helpful.