Feeling lost

User

Posted 28 Jun 2017 at 11:54

Hello all

I'm new to the group and in essence feel a little lost.

I've had a rising PSA for a number of years. 5 years ago my PSA went up to 4.5 and then reduced of its own accord closer to 3. I moved house at the end of 2013 and as part of joining a new surgery I was given a onceover and blood tests. The PSA was up again.

At the tail end of 2014 I was suffering from testicular pain and was referred to a urologist. As I have private medical cover I opted for the private route as I could be seen within a week and had a scan/blood test. The PSA was up slightly again so subsequently had a DRE. The consultant said my prostate still felt normal in terms of size, shape etc.. In discussion he said he was a little concerned that my PSA was up with a regular sized prostate. He advised regular testing.

In March my test found that the PSA had gone up again to just over 6 and so I was sent back to the consultant. He suggested we try anti biotics (doxycycline) to see if it made any difference. I took the pills for 6 weeks and it made no difference. In fact the PSA was up marginally by another .3. The situation has been complicated by the fact that the consultant has decided to pull out of private practice. The hospital haven't covered themselves in glory here and my private insurer has asked that I get a new referral.

I called in at my own surgery yesterday having booked an appointment with the "duty doctor"; never have I met anyone that seemed so uncaring, so uninformative or so disinterested in my fears. In fact I left feeling as though I was the guilty party for booking the appointment. I asked if I could see a specific consultant on the NHS and he said it was unlikely, so I'm back on the private route again.

At the moment my symptoms are

- a bit of testicular pain

- a little perineal pain

- a little bit of "weird feeling" near the tip of my penis

- some days I want to pee every 5 minutes; my flow is good each time I go. As yet I've not measure how much I pee. For example I recently had to drive 50 miles - about an hour from me. After half an hour I pulled in at the services and went to the loo - good flow/volume. Half an hour later I was bursting - really good flow and big volume. After the last one I didn't need to go again for hours. On other occasions I seem to be able to drive for 3 or 4 hours with no problems.

- I do get up in the night. If anything that's been better since the antibiotics and that makes me wonder if I have had an infection; generally that's about 2.15 in the morning - almost regular as clockwork. I'm a light sleeper but if I do get to sleep properly I then sleep through til 7 ish.

- most days I drink 3 cups of coffee up to about 11 a.m.

- 3 days a week I don't touch alcohol and have stuck to that quite well.

- occasionally I get the feeling like I'm sitting on a golf ball - I read that in another forum. It also feels a bit like being constipated but that feeling does come and go.

On the whole I feel pretty fit. I walk, play badminton and cycle regularly. I'm 180 tall and 97 kilos. If I didn't have the raised PSA I wouldn't be going to the Doc i.e. I don't feel unwell. If the testicular pain continued I might go to the Doc.

Right now I just feel at a loss. The GP just didn't want to listen and I feel rail-roaded into going private. On the one hand that's why you have insurance, but on the other each claim reduces my available "pot".

My own thinking now is see a consultant and hope he listens and then decide what to do. On that front (from what I have read) I would try and opt for an mpMRI prior to a biopsy; if my understanding is correct a biopsy could still miss something tiny there and you just end up having repeat biopsies. A lot of what I have does seem like it could be prostatitis but what are the options as the antibiotics didn't seem to have any effect?

Having written it down I feel better; any advice would be very welcome.

Thanks

Ian

User

Posted 07 Aug 2017 at 21:57

When I had my template biopsy in London done under anaesthesia, I was told by staff at the treating hospital that I must not drive for 24 hours after the procedure and I complied with this. I did not consult my insurers then or when I had a GA subsequently for HIFU. However, in view of Lyn's comments I will do so should I need a GA in future. (On both of these occasions I felt I could have driven a few hours after the procedure).

I did find it quite painful to sit down and I found it helped to slowly lower myself on to one cheek into a slouch position and then make contact with the other cheek whilst still adopting the slouch. Sitting upright/forward put a lot of pressure on tender parts. It took about 10 days before I could be really comfortable sitting down after the biopsy, although standing, walking or being in a prone position was not a problem almost immediately after it.

I had 50 needles and only 1 showed cancer.

Barry

User

Posted 09 Aug 2017 at 23:17

The experience of one man having a biopsy will not necessarily be the same as another.

The template biopsy will be through the perineum which means there is a lower risk of infection than with the TRUS where cores are taken via the Rectum. Nevertheless, it is usual to give an antibiotic, can't remember which I was given. Like Lyn's John, I had been on Tamsulosin for many years for another reason, without problem, (though some men have an adverse reaction to it). I was also given several packets of Codeine Phosphate for pain relief but only used 2 of these tablets on a couple of occasions - I try to avoid taking tablets unless I feel a real need.

There was only a very small amount of blood in my urine for about 3 days after biopsy.

I did take the opportunity to explore London on foot about three hours after the biopsy as I felt so good but rather overdid it! The following day I used a bus from the hospital to Paddington station and from there a 2 hour 10 minute train journey followed by a 49 mile drive to my home, with the seat tilted back! In retrospect and due to my long journey home, the overnight stay was a good idea but I felt I could have driven the 49 miles after the procedures if there was not the additional train journey.

It is likely that there will be greater swelling on the 2nd day or so after the procedure which can add to discomfort but this should be a lot better after a week or so.

Barry

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User

Posted 28 Jun 2017 at 12:46

Hello Ian and welcome

So if I understand you correctly your PSA is currently around 6? and the last DRE you had the consultant said the prostate was normal in terms of size and shape.

Have you had just the one lot of antibiotics or was different sort tried?

Even though it's only three cups of coffee, it can be an irritant, so perhaps leave it off altogether and see if it makes a difference.

Re: the uncaring GP, well unfortunately that does happen sometimes. why not try again at the GP and get an appointment with the original referring GP. Was that a male GP by the way. I would have thought a man would be more sympathetic.

With a PSA of 6 and discomfort I would want it investigated. It may well be a persistent infection but you need a definite answer to that effect and then you can get on with your life.

I expect you'll get other people along to offer advice, listening is something we do very well !

Best Wishes

Sandra

****

We can't control the winds - but we can adjust our sails

User

Posted 28 Jun 2017 at 14:03

Dear Johsan

You are correct - current PSA 6.5 and last DRE (April) was normal.

I have had just one course of antibiotics - Doxycycline.

GP was a male, yes; the original referring GP was his wife!

I have contacted a consultant at a private hospital today and will post how it goes.

Thank you for taking the time to post.

Ian

User

Posted 28 Jun 2017 at 15:19

Well good luck with the consultant and just to make sure that you get a genuine reading on the PSA avoid sex and riding a bicycle immediately before the blood test as sometimes they can skew the result

We can't control the winds - but we can adjust our sails

User

Posted 29 Jun 2017 at 12:24

For the record, I got a much more sympathetic - and effective - management from my (female) GP and the NHS than you seem to be getting from NHS and Insurance combined!

None of your symptoms - or the PSA - sound "too bad"; but that's not the point; you have symptoms, and it's causing you anxiety. That should be more than enough to trigger a much more thorough investigation than you've been offered so far.

Seeing the consultant sounds like the right way to go!

And as I'm sure he'll reassure you, biopsies only show what they catch, so they aren't 100% reliable - but, in general, they are pretty good.

Good Luck!

User

Posted 07 Aug 2017 at 19:37

First of all I would like to say thank you to those that replied. I haven't done a runner and I am most certainly not ungrateful.

Things have moved on. My wife and I did some research on some consultants the we knew worked within the price banding of my insurer; we did that independently and came up with the same guy. The referral was sorted and off I went. The appointment came and went and seemed to be over before it had begun. When I received my copy of his report though, my mind was put at rest; everything we had talked about was in the letter. He recommended that I have a MRI scan. Offered me one at the hospital but as it was only a 1.5T I opted to find my own. I went to the Wellington in St Johns, London where they have a 3T scanner, and managed to go in the tube at my second attempt (claustrophobic). The results came back to say there's a 7mm area of uncertainty at 3 o'clock completely contained with the prostate. The consultant wasted no time in suggesting a template biopsy as the next stage. As it can be targeted I am hoping he can take less samples than he otherwise might; he said that might be the case.

As I'm going to have a general anesthetic in one way I'm not too bothered about the procedure itself as I'll not know anything about it. Right now though, I don't want my employer to know what's going on as I don't want to appear vulnerable. I can lose a day for a hospital visit. Does anyone know how soon will I be comfortable to drive; I need to get into London from where I live which can be 4 hours in the car. There'll be a gap of about 4 and a half days from procedure to driving.

That's it for now. Will update when I know more.

User

Posted 07 Aug 2017 at 19:48

You would have to ask your motor insurance provider - it is they that will stipulate how soon you can drive after a general anaesthetic. My insurer says no driving for 2 weeks after a GA but I think others say sooner. My husband has a company car and so cannot keep that kind of secret from his company or their insurer. Don't be tempted to drive without checking you are covered, it would negate your cover :-(

Sad in this day and age that you feel telling work would make you appear vulnerable.

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

User

Posted 07 Aug 2017 at 20:17

Thanks Lyn

I would not have thought to ask my insurer.

Ian

UPDATE

I contacted my insurer, LV, and their rule is you must follow the advice from the doc i.e. if he says you can't drive for 48 hours, that's what they would expect you to do. Thanks for the tip Lyn.

Edited by member 09 Aug 2017 at 20:51 | Reason: Not specified

User

Posted 07 Aug 2017 at 21:57

I had 50 needles and only 1 showed cancer.

Barry

User

Posted 09 Aug 2017 at 21:14

Dear Barry

Thank you so much for your reply. I'm off to the H tomorrow for my pre-med or whatever it's called and I'm scheduled for 30th. I picked up my pills pack today and just reading the potential side effects has got me more even more worried!

Ciproflaxin - pack of 10 x 500 mg, one tab 2x per day starting 10 pm the night prior to the biopsy

Tamsulosin - pack of 30; one per day starting 7 days prior. Dizziness listed as 1 in 10

"On both of these occasions" - do you mean you would have felt ok to drive relatively soon after the biopsy? My bio is going to be targeted and the consultant said to me at the time he might be able to use less needles. Fingers crossed on that but equally I don't want to go through all this and not have a good sample taken.

My procedure day is a Wednesday and I'd like to be able to drive down to London on the following Monday. I can drive in my own time e.g. early evening to avoid traffic delays. From what you have said that sounds feasible.

Your comments re standing/walking are also re-assuring. I'm due to go to a gig 6 days after the bio; that's easily cancelled but I'd like to go if I can.

Did you follow the same course of meds?

Thanks once again

Ian

User

Posted 09 Aug 2017 at 21:43

Now you know you are insured from whenever the doc says you can drive, I think you might be over-thinking. John had his biopsy on the way to work one morning and didn't really think about it again until we got the results. He didn't have either of the meds you are taking although he had taken tamsulosin for about 15 years before diagnosis due to another medical issue.

I don't think a template biopsy will stop you enjoying the gig!

PS all template biopsies are targeted.

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

User

Posted 09 Aug 2017 at 23:17

The experience of one man having a biopsy will not necessarily be the same as another.

There was only a very small amount of blood in my urine for about 3 days after biopsy.

It is likely that there will be greater swelling on the 2nd day or so after the procedure which can add to discomfort but this should be a lot better after a week or so.

Barry

User

Posted 03 Sep 2017 at 13:35

Thanks - really appreciated that.

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