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
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We can't control the winds - but we can adjust our sails |
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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
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.
G
User
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
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
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 |
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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.
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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
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
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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.
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No, I was trying to be polite :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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
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
That sounds like good news. Enjoy your weekend.
THE CHILD HAS GROWN, THE DREAM HAS GONE |
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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
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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
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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
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User
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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Thanks for the reply Lyn.
Is that likely to be the course of action. A DRE and MRI and then depending on the results of the MRI possibly a biopsy?
Or could they just decide on MRI and Biopsy regardless? Personally I'd prefer to just have the MRI and then decide.
User
You should insist on a 3T resolution mpMRI scan and be prepared to travel to get one, and if you do end up having to have another biopsy, make sure you ask for a much more accurate template biopsy rather than another TRUS. Those are particularly pertinent in low Gleason scores such as yours.
You should also read the post today by Old Barry, ’Challenging the Doctor’.
Best of luck anyway.
Cheers, John.
Edited by member 17 Feb 2019 at 14:21
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Bollinge is being a little bit alarmist. As you are already under the care of Bradford Hospitals Trust and they offer mpMRI prior to biopsy in line with the PROMIS standard, you are not likely to need to ‘insist’ on anything or travel elsewhere to get it. Certainly, you should expect them to offer you an mpMRI - and while I am not usually supportive of MRI as a stand-alone factor in whether or not to have a biopsy I think in your case it should be easy for the medics to identify a) any changes from last year and b) whether any grey areas coincide with the area that was biopsies previously. Your PSA rise could be down to infection, which would also show as a suspicious area on a scan but with mpMRI they are often able to grade the likelihood of it being benign or malignant.
The more common problem for men on AS is the hospital not offering proper surveillance ... without an annual DRE and scan, it is more akin to closing your eyes and hoping for the best so yes, I would expect them to agree to a multi-parametric scan to see what is going on. Whether or not to have a biopsy (of any kind) should be discussed with your urologist once the results are back.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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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Matron, I was referring to the American paper linked to today by Old Barry, which specifically advocates 3T res. mpMRI scans and I did say to ‘Yorkie’ it would be worthwhile travelling to find such a scanner.
I realise the ‘best healthcare in the world’, NHS has finite resources, and as you know has done brilliantly by me, but I would always advocate others to try to strive for the best diagnosis and treatment, as indeed happened in my own case.
If you ask, you might get.
Cheers, John.
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I thought when you checked back, it turned out that you also had had ‘only’ a T1.5 - Prof hewhocannotbenamed seems able to cope without access to T3?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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It's perhaps worth noting that I did have a 3T mpMRI and it returned a false negative, so it's certainly not infallible.
Chris
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Strangely, no-one seems to be able to tell me what resolution my diagnostic scan was, although I seem to recall a ’GE 3T’ badge on the MRI machine as I was going into the tube. I might be mistaken.
Tommy the Tumour at 15mm would have been picked up at whatever resolution, as he would have been if I had had a TRUS biopsy.
All of the diagnostics were done in Coventry, and were nothing to do with Professor Whocannotbenamed here, who only carried out the prostatectomy. He didn't even look at the DVD of my scan when he took me on, just my written case notes. Disappointed my film didn't get an Oscar nomination for next week though.
Cheers, John.
Edited by member 18 Feb 2019 at 01:42
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Originally Posted by: Online Community MemberBollinge is being a little bit alarmist. As you are already under the care of Bradford Hospitals Trust and they offer mpMRI prior to biopsy in line with the PROMIS standard, you are not likely to need to ‘insist’ on anything or travel elsewhere to get it. Certainly, you should expect them to offer you an mpMRI - and while I am not usually supportive of MRI as a stand-alone factor in whether or not to have a biopsy I think in your case it should be easy for the medics to identify a) any changes from last year and b) whether any grey areas coincide with the area that was biopsies previously. Your PSA rise could be down to infection, which would also show as a suspicious area on a scan but with mpMRI they are often able to grade the likelihood of it being benign or malignant.
The more common problem for men on AS is the hospital not offering proper surveillance ... without an annual DRE and scan, it is more akin to closing your eyes and hoping for the best so yes, I would expect them to agree to a multi-parametric scan to see what is going on. Whether or not to have a biopsy (of any kind) should be discussed with your urologist once the results are back.
Thanks for the reply Lyn.
When I had my first consultation last year it was at Huddersfield and I was given a scan and an MRI on the very same day. The scanner was quite an old fashioned looking type so would this be an mpMRI that you refer to?
Following my PCa diagnosis I did have one consultation at Bradford but my last one and this Friday's are at Huddersfield again.
You mention that my PSA rise could be down to infection. If I did have an infection would this be obvious or are there some that just linger without giving any real symptoms?
User
I had my appointment with my Urologist today. He was concerned that I had not seen him for nearly 8 months and I explained it was certainly not of my making and that my appointments had been cancelled even though I had informed them that they were of high importance. He blamed the problem on the Appointments Centre.
I was given a DRE and he said that the prostate felt the same (a small amount of firmness) as the previous DRE, 12 months ago.
He said that I should now have another MRI and TRUS biopsy. I asked if I could have the better mpMRI as recommended by NICE but he said that I should have the same scan as before so that a like for like comparison could be made. I did remind him that my first and only MRI had shown nothing.
I asked if I had to have another biopsy and was told that the Active Surveillance regime required one and that if I declined one then I would be removed from Active Surveillance and moved to Watchful Waiting which would just use PSA tests as markers for any disease progression.
I can’t say that I came away from the consultation reassured that I was being offered the best diagnosis methods available and I would be grateful if someone can advise whether the advice and information I was given today was correct.
Thanks in advance.
User
Huddersfield :-(
Infection would not necessarily be obvious.
If you were my dad or brother, I would say go along with his plan, have the standard MRI, see what comes of it and then ask for a second opinion / referral back to Bradford.
My guess is that you will end up agreeing to another biopsy but unless the scan shows definitive changes to aim at, you will perhaps have to press for a template biopsy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Originally Posted by: Online Community MemberAt 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.
It was a bit heavy handed for the Urologist to say you'd be put onto Watchful Waiting if you refused the MRI considering your psa has reached 7. Although if they've offered diagnostic treatment and you're confident it will happen in a reasonable timescale it would be better to take it, unless you can guarantee better treatment elsewhere in similar timescales.
I've found it can get a little messier when you attend a hospital that isn't your local one. My GP can't see my results without looking through the scanned letters from the other hospital which he doesn't do. Otherwise though I'm happier at the other hospital where the surgical team are based and they have a big radiology centre. Although my local hospital has a very helpful Macmillan service which the other one doesn't seem to have or at least I haven't been offered it after the op.
The 4 months delay in your appointment isn't good, no doubt appointments will blame urology but there is also an onus on the patient to keep pressing. I'm not sure how true it is but I read that patients who complain, about their GPs, actually get better treatment, although I've always worried, and apparently so do others, it would be the opposite.
3+3 isn't too bad a place to be although you can never guarantee that the biopsy got the worse bit and you don't know where it's located. I recall reading in one of Lyn's posts that MRI under psa 10 is unreliable, although in my case they said I had a 13mm tumour with a psa fractionally under 10. Presumably yours is small if they can't see it at all and they do say that many men have latent cases so you always wonder if you made the right call. All the best Peter
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Not being entirely happy with the outcome of my recent consultation I've written to my GP to let him know of my concerns, specifically the refusal to consider the use of an mpMRI scanner to possibly remove the need for a TRUS biopsy. I will see what transpires from that.
In the meantime I've been looking into the options regarding getting a scan done privately as if that is the best thing to do then I'm happy to spend to get it.
Can anyone advise the best scan to obtain as there seems to be three options. I presume that the one I originally had was the 1.5T?
Standard MRI Scan 1.5 Tesla
3T MRI Scan (High Resolution 3 Tesla)
mpMRI Multi Parametric
Prices quoted for the mpMRI and 3T seem to be around £540.
Any advice or suggestions will be much appreciated.
PS - Seems like the price has gone up since I posted about it being £540
It's now £725
Edited by member 25 Feb 2019 at 13:49
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User
mpMRI isn't a different type of scan. An mpMRI will be done with either 1.5T or 3T.
I don't think you should assume that your previous scan was 1.5T - that is the standard that PCUK / PROMIS says all hospitals should have but there are many nationally that don't have it yet, let alone 3T and you may find (if you click on the interactive map) that Huddersfield still has one of he pre-1.5T machines or is even one of the hospitals using an obsolete scanner :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I stand corrected - according to their website Huddersfield is equipped with 1.5T scanners purchased in 2001 :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks for doing that bit of research Lyn. For my peace of mind I contacted Huddersfield and spoke to someone in the radiography department who confirmed that they had two 1.5T scanners.
Within easy reach of where I live are mpMRI scanners in NHS Bradford, Leeds and Barnsley. It is therefore very frustrating that I have been told I can only have a standard 1.5T scan and not mpMRI based on where I live.
I am hoping that after contacting my GP that he may have some influence over the matter. If not then private remains an option.
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I've just found this that seems to state that my NHS Trust can access mpMRI scans.
https://www.npca.org.uk/provider-results/trust/calderdale-and-huddersfield-nhs-foundation-trust/#services
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At Bradford and only with the agreement of your urologist :-/
Will be interesting to see what your GP says / suggests.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I'm curious as to why a Urologist would not refer me for an mpMRI when the option is available and is the recommendation of NICE. Is it likely to be a cost reason?
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Who knows? Presumably the same reason that Calderdale & Huddersfield Trust has not updated their equipment to offer diagnosis to PROMIS standard 🤷♀️
Even in areas where mpMRI is available, it isn't always offered to all men. It is being pushed as a diagnostic tool so perhaps men that are already diagnosed and have chosen AS are not in the right 'cohort'
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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