Low PSA but symptomatic

User

Posted 17 Apr 2018 at 16:42

Hi all

In mid-October of 2017 I was dropping my daughter at school in the car. I parked the car, made sure it was safe to get out and as I turned to exit the car I felt a muscle go on my lower back, right hand side. I lived with the pain for a few weeks as I have had lower back problems in the past. The initial pain went and I was left with dull pain, but persistent. I spent November and December using an Osteopath with no change of symptoms after religiously doing all and more of the exercises prescribed.

I am naturally an anxious person and Googled about Chronic back pain and read about PCa, I then recalled being caught out a few times driving the car and walking to work needing to urinate urgently earlier in 2017, not every day but the seed started to grow.

I went to my GP in panic mode and announced I thought I had Advanced PCa, I was given two DRE's (by two separate GPS’s) , Urine test and bloods were taken two days later. These came back a couple of days later and I was told the only thing that flagged up was my Thyroid, clinically under active and to take another test within the next few weeks. My PSA was 0.7 and. I am due to be 48 in May this year.

I have since discussed my Urination more with my GP and said how often I go, up to 8 times a day, no Nocturia, with occasional urgency. But I fear I have become hyper sensitive to my bladder and think that there is a possibility I have skewed in my mind what I think is normal and bladder habits have changed due to anxiety and over analysing (I hope this makes sense).

Meanwhile I have been passed to a second GP at the practice who has assured me, like the previous one did that they thought the 5 months of back pain was normal mechanical back pain and the urination is also normal. He took the time to go over my results and try to reassure me, but this only lasts minutes until out of the surgery and the wheels start to turn again.

My work has been very good about stuff so far, not sure for how much longer though, my partner thinks I am OK as she knows how I operate with anxiety, but she is at the end of her tether with it. I have had waking insomnia for two and a half months now, basically waking at between 2 and 3 am and tossing and turning till dawn, I am feeling muscular sensations I haven't had before, weakness, fatigue, stabbing pains in muscles at night, hip bone pain, popping and cracking of all my joints which feel quite inflamed, and crepitus in my right knee which I am pretty sure I never had before, the bones in my neck crack all the time, and now what feels like muscle wasting in arms and legs. There is a lot of "stuff" going on. I know some of this can be attributed to the anxiety and sleep deprivation, but I have never had a back problem last more than a couple of months, and it doesn't feel like anything I have had before. The GP referred me to several sessions of physio, again no change after all the exercises and treatment.

I am terrified I have been overlooked because of my age and no family history and clinical results. But I am now left with little else to do, my GP said a further PSA test would make me even more anxious if it were even slightly higher, and prescribed Citalopram for anxiety. I think most of my fear is fuelled by the unreliable nature of the PSA test and I have read so many stories of guys my age (and under) so i kno it is not an older gents disease any longer.

The whole process has been going on for nearly three months and i feel i am getting nowhere with my GP.

sorry for the protracted post, but would welcome peoples thoughts here,

Thank you

User

Posted 17 Apr 2018 at 20:29

One aunt with ovarian cancer doesn't increase your risk. If you had a mum, sister, grandmother and / or blood aunt all of whom had ovarian or breast cancer, that would increase your risk but you are thinking of the BRCA gene and less than 5% of prostate cancers are genetic.

Most of the symptoms you list are not typical of prostate cancer. Nagging back pain can be a symptom of getting older and having not looked after your back very well when you were younger. However, the frequent urination is a problem to you regardless of your PSA so there is no reason why the GP couldn't refer you to a urologist - even if that is through the non-urgent route. Urology would be able to test your urine flow rate and check that you are voiding properly - if you have developed a lazy bladder you can have bladder retraining (if it is available in your area) and if you are not voiding properly not only will you urinate more often but are more vulnerable to low level persistent UTIs which can cause, among other things, lower back pain.

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

User

Posted 17 Apr 2018 at 20:29

While you can have PC with a low PSA you are not likely to have advanced PC with a normal prostate (as checked via DRE).

So it may be you have some other disease but it is not going to be advanced PC.

Suggest you continue to take advice from your GP they actually sound very thorough!

User

Posted 18 Apr 2018 at 07:42

The key word in my message was "advanced" as you were worried about it being in your bones. I don't believe you can have this kind of advanced cancer AND a normal DRE.

You can certainly have PC with no symptoms a normal PSA and a normal DRE but this is very unlikely to be advanced.

I am sure Lyne will comment if my answer is BS!

User

Posted 22 Apr 2018 at 21:17

To an outsider, it sounds as if you have an anxiety disorder. My stepson has something which sounds similar to what you describe. Each twinge is a fore runner to something desperately wrong with him. In the last 12 months, he’s had Lyme’s disease, a stomach ulcer and liver failure. He’s in his late thirties and none of these things apply.

Whilst I do think that some people instinctively know if there’s something wrong, from what you have said, I don’t think you have prostate cancer. If it was advanced and in your bones, you would certainly expect a higher psa than 0.7. As a rule, the more advanced the cancer, the higher the Psa. Your GP has done lots of tests, twice, and they are clear.

Having said this, anxiety IS an illness. If definitely ruling out prostate cancer will allow you to move on, then ask for a referral to a urologist and request a scan.

Stay off Doctor Google. He doesn’t help.

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User

Posted 17 Apr 2018 at 19:13

Just thought I would mention that one of my aunts had ovarian Cancer several years ago, and as i understand it this does put me at a higher risk of developing PCa under 55 yrs, and I think I may be right in saying it will usually be a more untreatable aggressive kind? As you can see i am beating myself up properly here :(

User

Posted 17 Apr 2018 at 20:29

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

User

Posted 17 Apr 2018 at 20:29

While you can have PC with a low PSA you are not likely to have advanced PC with a normal prostate (as checked via DRE).

So it may be you have some other disease but it is not going to be advanced PC.

Suggest you continue to take advice from your GP they actually sound very thorough!

User

Posted 17 Apr 2018 at 21:01

Originally Posted by: Online Community Member

Thanks for your reply LynEyre, that is reassuring I had obviously misinterpreted the information on the gene testing site I was on.

My urination issues are tricky to pin down, because other than the few times last year I was caught out, it's hard for me to remember exactly what my normal was as i have become so wrapped up in the belief I have PC, and have become acutely aware of the times i go and any sensations in my bladder. Mornings do seem to be worse for me in regards to frequency, but this is usually the time i am at my most anxious, having been worried about this for nearly three months, and as mentioned have been averaging around 3 or 4 hours sleep each night in that time.

I have been working in an office for the past 3 years with pretty sub standard seating, and probably a terrible posture, so perhaps that may go some way to explaining the back pain. I think my worries stem from having read so many posts by men whose diagnosis developed from having some form of back pain, usually a constant dull one like mine. I have another PSA result next Monday, and will be going over all this again with my GP, so will mention the Urology appointment.

User

Posted 17 Apr 2018 at 21:08

Originally Posted by: Online Community Member

While you can have PC with a low PSA you are not likely to have advanced PC with a normal prostate (as checked via DRE).

Thanks francij4 for the reply. i am led to believe however that PC tumours can be on the other side of the Prostate and be undetectable by the digit. Is this rare with advanced Cancer and a smooth DRE test?

User

Posted 17 Apr 2018 at 22:03

My husband had a PSA of 7.6. He then had a DRE which was described as smooth and felt “fine” but to be on the safe side an MRI and a biopsy was recommended which revealed the cancer was out of reach of the DRE. Luckily my husband insisted on the original PSA as otherwise he may have thought everything was ok.

Hopefully your PSA will be ok and that it is something else causing your urinary and back problems other than PC.

Do as you would be done by

User

Posted 18 Apr 2018 at 07:42

The key word in my message was "advanced" as you were worried about it being in your bones. I don't believe you can have this kind of advanced cancer AND a normal DRE.

You can certainly have PC with no symptoms a normal PSA and a normal DRE but this is very unlikely to be advanced.

I am sure Lyne will comment if my answer is BS!

User

Posted 22 Apr 2018 at 21:17

Having said this, anxiety IS an illness. If definitely ruling out prostate cancer will allow you to move on, then ask for a referral to a urologist and request a scan.

Stay off Doctor Google. He doesn’t help.

User

Posted 23 Apr 2018 at 09:44

Originally Posted by: Online Community Member

If it was advanced and in your bones, you would certainly expect a higher psa than 0.7. As a rule, the more advanced the cancer, the higher the Psa. Your GP has done lots of tests, twice, and they are clear.

Hi Louise69, thank you for taking the time to reply.

It's obvious my anxiety jumps out from the way I write, and you are spot on about this. I do believe however that my clinical results don't reflect symptoms I have been having.

There are lots of men whose Prostate's don't secrete high levels of PSA, and can therefore be presumed to have a healthy functioning Prostate. I know also that PCa in younger men often tends to be a more aggression variant, many of these such as Small cell PCa secrete very little PSA,so you may never know until you wake up one day in pain. I believe my symptoms that persist relate to this form of Cancer and that my specific symptoms, continual dull lower back pain (since October) loss of muscle tone, urinary issues, joint pain and other pain is due to this.

Of course I hope I am wrong, but while I have knowledge of these Cancers (yes, I have Googled in a very unhealthy capacity) I cannot shake the feeling that this is what I have. I am at my wits end and have only averaged 3 to four hours sleep per night over the past 3 months. My partner is equally at a loss to know what to do, and I know it is affecting our 8 yr old daughter detrimentally.I would like nothing more than to be wrong, but every fibre of my being is shouting this at me.

Edited by member 23 Apr 2018 at 10:39 | Reason: Not specified

User

Posted 23 Apr 2018 at 16:46

Originally Posted by: Online Community Member

Hi Louise69, thank you for taking the time to reply.

It's obvious my anxiety jumps out from the way I write, and you are spot on about this. I do believe however that my clinical results don't reflect symptoms I have been having.

Hi Kark1970

I can partly relate a bit with your plight as I have been obsessing about having terminal cancer of some description since first becoming aware that "something was wrong" last autumn.

I first went to a GP in November who took some blood tests, (not PSA) and got fast tracked for a colonoscopy which I had last January.

Both the blood tests, (don't know what I had done but not PSA) all came back normal except for a slightly raised cholesterol and the colonoscopy revealed that there was no cancer there.

I wasn't satisfied that I didn't have cancer and was still obsessing about dying from cancer and was certain that my symptoms confirmed this.

I have a lump in my upper left abdomen that I have been worried about for months and a GP just dismissed in seconds.

I feel exhausted a lot of the time and I have terrible pain in my left hip that comes on in the early morning.

I'm only 52 but I feel like like an old man.

Now after a PSA test, (6.5) and DRE in late Feb I was referred to the Hospital Urology dept who sent me for an MRI scan on 23rd March.

Now I know I have been told I am to have a transperineal biopsy on the 5th June and I won't get the results of that till the 12th June.

By then I would have had nearly nine months of worrying and obsessing about dying from cancer.

The worst thing is that if I get told I don't have PCa it won't satisfy me as I am only going to worry that I have cancer somewhere else in my body!

I cannot offer you any advice as to what you can do except to discuss your concerns with your GP but I know for myself how frustrating this can be to get your GP to take your concerns seriously.

No doubt like me you feel like you're driven mad with it all.

I wish you well and hope you get the answers you're looking for soon.

User

Posted 28 Aug 2018 at 14:36

I feel exactly the same right now :-(

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