An Unknown Journey

User

Posted 10 Feb 2018 at 14:02

Hello Everyone

Unfortunately I find myself joining this forum as I was referred to a Urologist last Tuesday.

Before Christmas I was getting some discomfort around my prostate area and also in my penis and testicles. It was nothing too bad and I thought I'd wait till after the holiday period to see if it subsided. No blood was evident.

It would disappear for a while and then come back so I thought it wise to so and see my GP. which i did on 28th Dec. She did a urine test and arranged a blood test that same day and prescribed Ciprofloxacin for me to take for a week. After a week I went back to see her and she said that my PSA was 3.6. She told me to take Ciprofloxacin for another 3 weeks and then get another blood test done.

When I saw her (30th Jan) for the result of that blood test my PSA had risen to 4.0 so she thought it a good idea to go and see a urologist.

Within a week I had my appointment and on this last Tuesday I saw the Urologist. He did a DRE and described some 'firmness' on one side of my prostate so arranged for me to have both an MRI and TRUS biopsy done that very same day. I must say that I was quite shocked by the pace of events as I had previously been told that it would be JUST a consultation and with no tests. I'm not complaining though as it was far more convenient doing it this way and obviously I wasn't having to wait with the inevitable concerns about what might happen.

Oddly enough I was dreading the biopsy more than the MRI however I did get a little claustrophobic in the scanner and in the end the biopsy wasn't too bad at all.

While the biopsy wasn't too bad there was one sample taken that did rather hurt at the time and after the process was felling rather sore and uncomfortable in the prostate area. Is that normal? Funnily enough I've seen no blood in either urine or stools yet. I was given Metronidazole 400mg and Ciprofloxacin 250mg before biopsy but nothing to take afterwards. is that normal practice?

So now it's the wait of around 2 - 3 weeks before I go and get my results.

I'm in a strange position at the moment as I really don't know what the tests will show. Ideally it will be that I have some form of Prostatitis or Enlarged Prostate however I am also aware that something worse may also be responsible for the symptoms I have.

It would be appreciated if someone can address the points I have made on here as not knowing anyone else who has gone through this i do find myself in a rather lonely and worrying place.

Thanks

Dave

User

Posted 10 Feb 2018 at 16:40

Thank you for the reply and welcome.

Yes, I realise that in a way I'm fortunate that I've been seen and examined so quickly. Apparently this new Fast Track system was only introduced 6 weeks ago.

My doctor did the urine test in the surgery while I was present and said that there were no signs of infection. The urologist suggested that I should have been on Ciprofloxacin for longer than the 4 weeks that I was on it.

User

Posted 12 Feb 2018 at 10:31

Hi Paul
Thanks for your reply. As far as I know there has been no history of PCa in my family although my father had bladder cancer at the same age I am now. He's still going strong at the grand old age of 88 so I always take comfort knowing that having cancer can certainly be survived with life going on normally.

User

Posted 21 Feb 2018 at 20:56

Thanks for the reply Lyn. Unfortunate is one way of putting it although I don't it would be my choice of word on this particular occasion.

I have been referred on to St Lukes hospital at Bradford.

User

Posted 17 Feb 2019 at 15:42

PS Bollinge also refers to the mpMRI being 3T - in fact, 3T is hardly available anywhere in this country and the PROMIS standard to which PCUK is trying to get all hospitals to work towards is 1.5T. I believe that BRI is already providing 1.5T so ahead of the game compared to many regions.

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

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User

Posted 10 Feb 2018 at 15:20

Hello Dave and welcome to the site

Naturally you are feeling anxious. Whatever is causing your current problem we do understand because to some extent we have all been there and know that feeling.

Waiting for any result is nerve racking.

Whatever the cause, you have been dealt with extremely quickly so even if the news isn't the best (and no reason to suppose anything nasty at this stage) then you are well ahead of the game.
Promptness by your GP has to be commended, judged by some of the laggardly attitudes reported on here.

As the doctor did a urine test and gave you ciprofloxacin I assume she suspected an infection. Did she ever confirm that you had had an infection?

Anyway, once you get the result we'll be able to offer more help and advice and in the meantime I hope somebody will be along to reassure you

Edited by member 10 Feb 2018 at 15:21 | Reason: Not specified

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

User

Posted 10 Feb 2018 at 16:40

Thank you for the reply and welcome.

Yes, I realise that in a way I'm fortunate that I've been seen and examined so quickly. Apparently this new Fast Track system was only introduced 6 weeks ago.

User

Posted 10 Feb 2018 at 19:14

Hi Dave,

Sorry you find yourself here, but it sounds like you are getting excellent treatment.

Base PSA levels increase with age, so posting your age will help members give advice.

My PSA was 9.6 at 61 years

I remember the waiting for results being an anxious time and I displaced this as much as I could by getting information about PCa so I understood a bit more and was better prepared.

The 'Information' Tab at the top of the page takes you to some useful pages. The 'Toolkit' has lots of useful information, and the Specialist Nurses on the telephone number are really helpful and knowledgeable.

Good luck and keep posting.

User

Posted 11 Feb 2018 at 19:25

Thanks for the reply Graham. Sorry about not adding my age to the post or profile. I've done that now and I'm 57.

Your advice is sound and like you I have been trying to gain as much information and knowledge as I can relating to prostate matters.

While I was obviously quite shocked and scared after I had the consultation and tests I am trying to be a bit more relaxed over it and still hopeful that the results will show something more benign than PCa.

User

Posted 11 Feb 2018 at 22:08

Hi Dave

Sorry your here but you will find a lot of friends who understand.

Waiting is not good but your GP is on the ball and your urologist as well.

I had a PSA of 6.41, that was nearly 4 years ago and now it's below 1 after treatment,I'm nearly 76 and going strong.

Hopefully you will be fine, but whatever happens you have friends here.

Good luck

Alan

KEEP POSITIVE and CARRY ON

User

Posted 12 Feb 2018 at 09:03

Hi.

Your story is very similar to my experience. I was 58 and without any real symptoms although I did feel some discomfort in my testes for a while prior to my diagnosis. I don't know if you have a family history but my father and maternal grandfather both had PC? I went to see the urologist and had a biopsy the same day. Yes it was uncomfortable for about a week or so after. I had blood in semen only. Yes I only had prophylactic antibiotics none after. Unfortunately my results confirmed PC but 3 years on all things are now fine. It was always the waiting that was the most difficult but once you know where your at you can focus on what you need to do. Hopefully it's all fine. Please feel free to check out my profile. Take care.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 12 Feb 2018 at 10:31

User

Posted 21 Feb 2018 at 16:48

So for the last two weeks I've obviously been quite anxious about my next appointment next Tuesday, when I should get the results of my MRI and biopsy. I've been trying to get on with life though to try and distract myself from the nagging doubts at the back of my mind.

Today I received a letter telling me that I also have another appointment on March 5th at another Urology department at another larger hospital.

Obviously this has made me even more anxious and worried.
Is it normal for such a process to happen, especially as I haven't even been informed what the first test results show. It's difficult to now not think that there is 'something' of concern in my body and it needs further examination.

Any replies much appreciated.

User

Posted 21 Feb 2018 at 20:01

That is a bit unfortunate isn’t it as it is reasonable to assume that they found something of concern but you are left in a wilderness of suspecting but not knowing.

When John had his biopsy, the letter inviting him for his scans arrived before the appointment to see the urologist so we knew it was cancer before we even walked in the room. The urologist was very apologetic but sometimes the appointment departments are too efficient (is that possible?)

Where have they referred you on to?

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

User

Posted 21 Feb 2018 at 20:56

Thanks for the reply Lyn. Unfortunate is one way of putting it although I don't it would be my choice of word on this particular occasion.

I have been referred on to St Lukes hospital at Bradford.

User

Posted 21 Feb 2018 at 21:17

No, I was trying to be polite :-/

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

User

Posted 22 Feb 2018 at 13:16

I think the one question I have is this.
Could there be other reasons as well as the presence of Pca why I could have been referred to another urologist. Unfortunately at this moment in time that is the only possibility that I can really think of.
It would be nice to have some reassurance at this moment in time.

User

Posted 22 Feb 2018 at 15:10

Hi Dave,

Other reasons could be an infection or enlarged prostate BHP [Benign prostatic hyperplasia, or BPH, involves enlargement of the prostate gland. The prostate enlargement in benign prostatic hyperplasia is not malignant (not cancer). ]

Your PSA level at 4 is quite low. If you were 60 yr old the PSA of 4 would be borderline treatment or not. If it is PCa it is likely to be low grade.

But as you say the DRE was firm. I understand a symptom of PCa is an irregular surface on DRE.

Waiting for the results is an anxious time, try to keep your mind off it, keep distracted, it's not going to change the results.

Easier said than done, I had a 50x50mm growth found on the Adrenal Gland a day ago by ultrasound. My PSA results were in last week but they haven't forwarded them to me, but my excellent GP took bloods 3 weeks earlier so hopefully it's unlikely to be related to PCa.

Hang in there, G

User

Posted 23 Feb 2018 at 14:02

Because of the administrative errors as mentioned in my previous post I contacted the Support Nurse that I had been allocated to. Unfortunately I had to leave a message on her answerphone however this morning she has contacted me.

She apologised for the way that another appointment had been sent out to me before I had even had chance to discuss the results with my consultant. She understood my raised concern at this and because of this problem she asked if I wanted to be given the results now instead of on Tuesday. I said I did as I had to find them out at some point so in my opinion I'd prefer them sooner rather than later.

The results are that the MRI found no problems in my groin area however one of the biopsy cores in the LHS of the prostate showed microscopic signs of cancer. The RHS was benign. She described it as just 5% of one of the cores. The Gleeson score was 6, 3+3. She also described it as the "least aggressive".

Because of this a follow up appointment had been made at the other hospital however she agreed that I should not have been notified of this until after I had been told of the results.

The nurse suggested no treatment should be needed at this time and that I will be put under active surveillance and that another biopsy will probably be carried out in 12 months time.

I know it's never great news to find out that you have some cancer in your body but based on the results I am relieved that it was not more serious. I will probably address some lifestyle and dietary issues that should hopefully keep whatever is going on in my prostate in check.

I have to say I feel a lot more releived than I was.

User

Posted 23 Feb 2018 at 20:59

That sounds like good news. Enjoy your weekend.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 15 Mar 2018 at 16:29

An update on how things are going.

I had the follow up appointment with a specialist at Bradford Hospital. He explained the results of my tests and said that I had various options. Either to have surgery, radiotherapy or to just adopt the active surveillance. I asked what he would do if he was in my position and he said he would do the latter which I'm happy to do.

I've just today received a copy of the letter that has been sent to my GP and it contains the exact details of the results of my biopsy.

Adenocarcimoma of the prostate - low to intermediate risk T2a left with PSA of 4ug/L
MRI scan showed organ confined disease. Gleason 6 in 1/5 cores 5%
Clinic review in 3-4 months with up to date PSA

So it's now a case of get on with my life and see how things are in 4 months or so.

Edited by member 15 Mar 2018 at 16:29 | Reason: Not specified

User

Posted 20 Sep 2018 at 10:36

hi dave I'm new to the community on here , but read your profile and am being reffered to st lukes Bradford after I get my m.r.I scan results next week just wanted to know what you thought of treatment from st lukes ? as I live in Huddersfield , and how are things with you now many thanks dave

User

Posted 17 Feb 2019 at 11:14

It's a while since I've been on here as things have been going fine and I've needed to get on with my life.

Sorry Getwell for therefore not replying to your post before now as I was just unaware of it.

I'm afraid that I can't really give any views on St Lukes as I just had one consultation there. I did have to wait a long time though however the consultation was thorough and I got chance to speak to a specialist nurse after my time with the consultant.

While having a generally worry free year I've recently had a blood test and there has been a concerning spike in my PSA.

At the start of my journey a year ago my PSA rose from 3.6 - 4 over 27 days. It then went from 4.0 - 4.5 over the next 158. Then there was a small increase of 0.1 over the next 134 days. The last blood test however has jumped 2.4 from 4.6 to 7.0 over 84 days.

I received the results of this blood test at my local GP's and he showed me the graph of my PSA levels. Over the year it showed a lovely curve which had flattened off and then right at the end there was this anomalous upwards spike.

Since then I've been trying to think if anything other than PCa could have caused this increase. One thing i did wonder about is this.
For the last couple of months I've had Sciatica (fortunately improving) and I've been doing quite a lot of stretching exercises. Primarily these stretches are focused around the buttocks and groin area. Before my blood test I did feel some twinges and discomfort around my prostate area and did wonder whether this could affect my upcoming blood test result.

I have my scheduled consultation at the hospital next week so I am rather concerned now what they will suggest.

Any thoughts much appreciated.

Edited by member 17 Feb 2019 at 11:14 | Reason: Not specified

User

Posted 17 Feb 2019 at 12:16

As you are on AS, you should have an annual DRE and scan as well as the regular PSA tests so you should be due for a scan now anyway. If the scan shows any changes, a new biopsy would be wise.

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

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