An Unknown Journey

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.

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.

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.

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.

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.

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

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

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.

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.

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.

Chris

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?

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.

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  | Reason: Not specified

I think you are probably right Lyn. The scanner I used was quite an old looking machine. Is this the interactive map that you referred to? This one only seems to show if the hospital has mpMRI.

https://prostatecanceruk.org/about-us/news-and-views/2018/6/access-to-mpmri

This is the website I'm looking at that provides private scans.

https://securescanners.com/?gclid=Cj0KCQiAwc7jBRD8ARIsAKSUBHJChkH8FWlzloCkyXbahonuBmI9QLfhzUWDOny3SDWRx3b2LuwJCg8aAkZDEALw_wcB#s=1

Within the options is the 'MRI Prostate Parametric' - I presume this is the one that would be best for me?

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.

Will be interesting to see what your GP says / suggests.

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'

In my experience the GPs I have met in the last few years know very little about prostate cancer, which is why I present them with PCUK’s ‘Toolkit’ comprehensive information folder, whenever I have a consultation.

They seem to accept the Toolkit graciously. Whether they ever read any of it (or have the time to) is another matter.

Cheers, John.

Any MRI scanner can do an mpMRI scan, although there are different methods for newer scanners.

Did you have an injection part way through the scan (usually done remotely through a canular so you don't need to move)? It's a gadolinium-based contrast agent. That would be a mpMRI scan. The images with the contrast are compared with those without - that's the multi parametric.

Gadolinium can't be used in patients with poor kidney function, so you normally have to answer some questions before they can give you the contrast. If you can't have it, then you need a newer scanner which can do contrast enhancement in different ways.

An update.

I had my mpMRI scan and the results apparently show an 8mm focus within the left lower aspect of my prostate. It is possible that this was present on my earlier scan so the MDT are going to obtain that imaging for comparison.

The letter that I received with this result also told me to be "reassured that the scan has not shown any other significant changes and that the scan confirms organ confined prostate cancer."

Today I had my bone scan following on from the suspicious T1 and T2 signal in my right iliac bone after a scan for my sciatica. Results to be sent to my GP in a week's time.

My wife yesterday had her pre radiotherapy scan for breast cancer. My dad next week has an ultrasound scan for his heart problems.

I'm seriously thinking about getting a campervan and just living in the hospital car park. Trouble is the fees mean I'd be penniless within months!

Worrying times although I do try to remember than bone mets are unlikely with Gleeson 3+3 = 6 and a PSA of 5.6