PSA 33 but no apparent urgency for diagnosis - Being diagnosed with prostate cancer

User

Posted 28 Mar 2018 at 15:45

Hi Everyone,

I am in the early stages of diagnosis.

I’m 68 years old and for some time have been experiencing problems with urination frequency which I had assumed was due to taking diuretics for high blood pressure.

On 7 February 2018 I experienced an episode of haematospermia. (blood in semen)

On 21 February 2018 I visited my GP and was given a digital examination which seemed normal. My PSA test result however was 33.

On 6 March 2018 I was seen by a Nurse Consultant at the urology clinic of NHS funded GP Care Ltd for a planned TRUS biopsy but this was not performed.

Having read in the press that an mpMRI scan was more likely to detect a cancerous tumour and was less invasive, I challenged the decision to perform a TRUS biopsy first. A digital examination suggested an enlarged prostate with no obvious signs of cancer. I was therefore sent for an MRI scan. Both my GP and the Nurse Consultant assured me that the haemtospermia was not an indicator for prostate cancer and indeed after just one more episode it now appears to have be resolved without any treatment.

On 21 March 2018 an MRI scan was performed at North Bristol NHS Trust. While there I asked one of the radiology team if the scanner being used was an mpMRI scanner. The reply was that it wasn’t but was very good and gave very good images!

I now have to wait anxiously for up to 4 weeks for the MRI results. My understanding is that if my MRI scan indicates cancer, I will be offered a TRUS biopsy at the GP Care Ltd clinic. I am more than a little concerned that they may not have used an mpMRI scanner and the results may be unreliable.

According to the North Bristol Trust – NHS – Urology website there is a One Stop 2 Week Waiting Urology Service available at the same hospital I went for my MRI scan.

https://www.nbt.nhs.uk/bristol-urological-institute/urology-patient-services/urology-one-stop-clinic

I feel that I could have been diagnosed much sooner if my GP I had been referred me there? My GP says that the GP Care Ltd. service is the one used in my area.

User

Posted 28 Mar 2018 at 17:26

The “Gold Standard” for PCa diagnosis is a multi-parametric MRI at high resolution (at least 2 Tesla but 3T is best) FIRST, followed by a template biopsy if necessary under general anaesthetic if you are well enough for it.

Two friends who have been down this road before, separately told me: “Don’t let them palm you off with a TRUS”, they both had had a TRUS but were then called back for a more accurate template or target guided biopsy, as did another man on my recovery ward who had a TRUS last August, and then had to wait until this year for another one.

There are others here who have had to have two biopsies instead of one, because the TRUS is random. During my template they sampled 42 cores, whereas a TRUS might take only 9. It’s cheaper for the cash-strapped NHS, which is why they try to railroad you into having one.

Some may disagree with me, but I am glad I stuck out for a template, although it still confirmed I have cancer😟

Edited by member 28 Mar 2018 at 17:57 | Reason: Not specified

User

Posted 28 Mar 2018 at 18:26

Thanks Bollinge for your detailed and helpful reply. I wish you the very best of treatment and outcome following you own diagnosis.

I will try to hold out for a template biopsy but that will mean getting referred on to North Bristol Trust - One Stop Clinic.

While trawling the internet I stumbled upon this Freedom of Information Request from PCUK to North Bristol Trust for information about available scanners and their use in prostate cancer diagnosis.

https://www.whatdotheyknow.com/request/multiparametric_mri_usage_data_f_139

It seems that they do have both 1.5T and 3T multi-parametric MRI scanners available but I don't know which if either they used for my scan. I'll try to update you when I get my results. The following is an extract from the response to the Freedom of Information Request:

2. How many scanners do you have available to use for mpMRI scans before prostate biopsy?
2 out of 4 scanners at Southmead hospital can be used for mpMRI prostate. Although the majority of prostate scans are carried out on the GE MR450
3. For each individual scanner used for mpMRI scans before prostate biopsy, please provide the following:
Scanner 1
• Make GE
• Model MR450
• Magnetic field strength 1.5T
• Age 6 YEARS
• When the scanner is due to be replaced APPROX AFTER 10 YEARS
Scanner 2
• Make PHILIPS
• Model INGENIA dSTREAM 3T
• Magnetic field strength 3T
• Age 2 YEARS
• When the scanner is due to be replaced APPROX AFTER 10YEARS

User

Posted 28 Mar 2018 at 19:56

Many hospitals do not yet have a 3 Tesla scanner but even those that do sometimes use the 1.5 model. My scans at UCLH were generally done using the higher resolution scanner but the last one at check up (which I queried but told it was adequate), was done on a 1.5 scanner.

Barry

User

Posted 28 Mar 2018 at 20:07

Even with a mpMRI there is no guarantee that the results are 100% reliable - just as with biopsies, you can get false negatives and false positives. The important thing is to make sure you get a scan and a biopsy, and that the scan is not done too soon after a biopsy (where bleeding / bruising can affect the scan result). If the guy told you that you didn't have an mpMRI then you probably didn't. You could ask for a second referral to the other Trust but it seems to me that the quickest way to get answers is to wait for the result of your MRI and then insist on a biopsy regardless of the scan result.

At this point, do you know that your trust will refuse to give you a template biopsy? The fact that they cancelled your TRUS and gave you a scan instead suggests that they may be catching up with the 21st century?

You say at the end of your post "I feel I could have been diagnosed much sooner" - with an enlarged prostate it is entirely possible that you have a benign condition and that there is indeed no cancer - we have had members with PSA 2 or 3 times higher than yours who do not have any apparent prostate cancer despite numerous and frequent tests.

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

User

Posted 29 Mar 2018 at 00:00

Thanks Old Barry and LynEyre for your support, inputs and encouragement. I don't know how I will take it when I get my diagnosis but I'm trying to be prepared.

LyneEyre: The guy that told me it wasn't an mpMRI qualified his remark by saying it didn't have ultrasound which I thought was a bit odd? He was the guy that prepared me for the contrast injection so it's possible that he didn't really know. Today I found a study report (admittedly dated 2007) which concluded: Serum PSA >30 ng/ml is an almost certain predictor of the presence of prostate cancer.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2574301/

I'm pretty certain that GP Care Ltd won't have the equipment to do a template biopsy without further referral to North Bristol Trust – NHS – Urology and of course further waiting for an appointment. They were using a mobile set up for a TRUS biopsy in a small health centre. I'm learning all the time and, thanks to all of you, will have more questions to ask when I go back for the MRI results.

User

Posted 29 Mar 2018 at 00:33

It is a good predictor but we have men on here with much higher PSA and only a very large prostate! So yes, prepare yourself but don't assume it is nailed on. It goes the other way as well of course - we have men whose PSA was in normal range but still had extensive spread and my father-in-law had a PSA of 1.2 so no-one noticed the mets in his soft organs until the day before he died.

A mobile unit in a health centre sounds hellish :-( As you say, very unlikely to have the facilities for general anaesthetic. As for the mention of ultrasound, they may be one of the centres trialling mpMRI combined with ultrasound guided biopsy - everything is done at once. Nationally, there are very few mpMRI facilities and an awful lot of research going on to work out how best to use it.

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

User

Posted 29 Mar 2018 at 09:20

Thanks again for the thoughtful and informed comments LynEyre and all. We are going away for Easter and I haven't yet worked out if it's practical to access these forums from a phone so I hope you won't think I'm being rude if I don't manage to post over the weekend.

User

Posted 04 Apr 2018 at 14:52

Just a brief update. I called GP Care (NHS) Ltd today as it's two weeks since my MRI scan. They told me the report was not yet back from radiology. I called the North Bristol Trust radiology department and they advised that there is a backlog getting reports out but noted that my scan was marked urgent and they would chase it further to hopefully get a report out by Friday.

Edited by member 04 Apr 2018 at 21:11 | Reason: Not specified

User

Posted 04 Apr 2018 at 16:29

Originally Posted by: Online Community Member

Just a brief update. I called GP Care (NHS) Ltd today as it's two weeks since my MRI scan. They told me the report were not yet back from radiology. I called the North Bristol Trust radiology department and they advised that there is a backlog getting reports out but noted that my scan was marked urgent and they would chase it further to hopefully get a report out by Friday.

Good job you are proactive, otherwise your radiology report might be at the back of the queue! And you’ve possibly got a biopsy to look forward to. 😟

There is so much right with our NHS, and so much wrong!

Edited by member 04 Apr 2018 at 18:27 | Reason: Not specified

User

Posted 07 Apr 2018 at 18:23

Yesterday (Friday 6th April) I called North Bristol Trust radiology. It seems putting a chase on the report worked as they told me it had been sent to GP Care (NHS) Ltd on Thursday 5th April. I called GP Care (NHS) Ltd and they confirmed that they had received it. It would now go to a Urologist for 'triaging' and then on to my own GP who will give me the results of the MRI some time next week.

User

Posted 07 Apr 2018 at 20:29

Hillsrob, I find the runaround you are being given distinctly odd. You should be seen by a urologist and/or an oncologist, not a GP. I wouldn't trust my GP with anything to do with cancer, way over his head, not primary care!!!

User

Posted 07 Apr 2018 at 21:05

For what it's worth I wholeheartedly agree with AC.I don't understand why you are being passed from pillar to post for your results etc. You need continuity of care for something like this.

With the best will in the world I don't see how a GP can answer your questions or explain your results to you fully. Can you not insist you are seen by a Urologist/ Oncologist instead? They certainly deal with prostate cancer patients differently in your neck of the woods. I hope they don't roll out this system to the rest of the country.

Regards

Ann

Edited by member 07 Apr 2018 at 21:11 | Reason: Not specified

User

Posted 07 Apr 2018 at 23:35

Hi AC and Peggles. Many thanks for your concern.

From day one I have felt like I am outside the main loop of treatment. I have expressed my concerns to my GP to the point where he got quite cross with me. I have called and emailed GP Care (NHS) Ltd but they promised to call me back, even suggest that I go private and haven't replied to my emails in which I asked for answers to 3 questions:

Q1. Do I have a Consultant Urologist overseeing my case? If so who is he/she? Which organisation does he/she report to for my case?

On my MRI scan reference information it stated GP Care - Dr <nnnn>. I have contacted his secretary at North Bristol Trust but was advised that his name would just have been used as a doctors name is required in order to access the radiology facilities at North Bristol Trust.

Q2. I would like to know if my scan was carried out using a multi-parametric Magnetic Resonance Imaging (mpMRI) scanner or a different type of MRI scanner?

The notes on my appointment say: MRI Pelvis Prostate , MRI Pelvis Prostate with Gadolinium.

Q3. According to the North Bristol Trust – NHS – Urology website there is a One Stop 2 Week Waiting Urology Service available at Southmead. Could I have been diagnosis sooner if I had been referred there?

https://www.nbt.nhs.uk/bristol-urological-institute/urology-patient-services/urology-one-stop-clinic

When I see my GP next week regardless of the results I will insist on being referred urgently to a urologist at North Bristol Trust NHS.

User

Posted 07 Apr 2018 at 23:59

I think AC and Peggles have misunderstood the situation. GP care is a private company set up in that area by GPs to reduce the number of hospital referrals. GP Care Ltd won the contract for NHS urology services some years ago - the GP refers you, the private company does the scans and, if thought necessary, a biopsy and then sends the results back to the GP who is paying for those tests. If the results are concerning, the GP will refer you to the hospital. GP Care Ltd does not employ any specialists so you won’t be under a urologist at the moment.

Yes, it seems like a s*** system to me too but like all the paediatric services that have been privatised in the Swindon area (resulting in very disabled children not being seen by a paediatrician for 18 months or more) this is how our NHS is being broken bit by bit.

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

User

Posted 08 Apr 2018 at 00:32

How awful Lynn. These systems would have me feeling like hitting my head against a brick wall. 😣I think Rob is quite right to insist on seeing a urologist though.

User

Posted 08 Apr 2018 at 09:38

Originally Posted by: Online Community Member

That's a useful bit of information LynEyre. GP Care (NHS) Ltd have told me over the phone that the results will go back to my GP. My GP insists that now that I have been referred to GP Care (NHS) Ltd, it is up to them to refer me on if I need further treatment. This is when he got quite cross with me for questioning the process. Let's see who turns out to be right.

User

Posted 08 Apr 2018 at 09:39

Originally Posted by: Online Community Member

How awful Lynn. These systems would have me feeling like hitting my head against a brick wall. 😣I think Rob is quite right to insist on seeing a urologist though.

.... and that's exactly how I do feel at times Peggles. https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User

Posted 08 Apr 2018 at 15:17

Just for the record, I did not misunderstand the situation. It is just as I suspected and a daft way to try to save money at the expense of care quality. I can't see how hillsrob has benefitted at all. Get on to your local MP, mate, this is NOT the way to go!

User

Posted 08 Apr 2018 at 15:38

I would like to think his results were so unremarkable and that is why he is being referred back to his GP for follow-up, rather than a specialist.

Fingers crossed Rob!

User

Posted 08 Apr 2018 at 15:59

Originally Posted by: Online Community Member

What is an MP going to do? This company has passed every CQC inspection it has had, and has held the contract for urology services since 2007. I think it might be a bit late for the MP to start campaigning against it :-/

Bollinge, Rob clearly stated that the results go to a urologist for triage - the GP will simply be passing on a message, good or bad.

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

User

Posted 08 Apr 2018 at 18:00

Originally Posted by: Online Community Member

Bollinge, Rob clearly stated that the results go to a urologist for triage - the GP will simply be passing on a message, good or bad.

Matron, when I had my ‘bad” news Big C meeting with the consultant urologist, there were two others in the room, I assumed they were the multi-disciplinary team. Wrong, there was a “Mc Millanish” nurse and a.n. other, someone doing a survey. At least I had an audience with a consultant whom I had never set eyes on before.

How can it be that if the guy has a problem, he is not seen by a specialist? I hope it’s for a good reason!

Edited by member 08 Apr 2018 at 18:01 | Reason: Not specified

User

Posted 08 Apr 2018 at 18:08

Because that is how the contract has been set up in that area - the MRI is done in the community and the results are triaged by a duty urologist - if they believe there is a problem, they tell the GP to tell him he needs to come back for a TRUS biopsy. The biopsy is also managed by the private company, it seems. If the MRI and biopsy results indicate cancer, presumably the company tells the GP to refer the man to hospital for further assessment. At that point, he is probably put onto the books of a consultant.

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

User

Posted 10 Apr 2018 at 21:03

Yesterday (Monday 9th April 2018) I called my GP surgery and explained to the receptionist that my MRI scan report had been with GP Care (NHS) Ltd since Thursday 5th April and they were now awaiting triage by a Urologist.

I asked if it would be possible for my GP to enquire about the content of the radiology report. Within hours I received a message from my GP who proposed downloading the results from the database and giving me his non-expert interpretation over the phone. I agreed to this and later in the day he called me and explained that the scan revealed an 'abnormality' on one side of my prostate. I asked if there was any evidence of metastasis and he responded that my bones and lymph nodes appeared to be clear but there was a note concerning a cyst on one of my kidneys. Clearly this will also need further investigation along with the obvious next steps regarding my prostate.

I also asked if he could tell from the results if my scan had been a multi-parametric MRI. He said he couldn't tell from the data.

He said he would contact GP Care (NHS) Ltd to get an immediate update and today called me back to say that I have now been referred to North Bristol Trust (Southmead) for an urgent biopsy under anaesthetic and that I would be contacted by Southmead directly for an appointment. I'm assuming that 'under anaesthetic' implies a Template Biopsy using the data from my MRI scan.

So it's now 48 days since I visited my GP to ask for a PSA test. I still haven't seen a Urologist and who knows I may not see one for several weeks yet. At least the order of my treatment has been as I would prefer i.e. MRI scan followed by template biopsy.

Edited by member 10 Apr 2018 at 21:06 | Reason: Not specified

User

Posted 10 Apr 2018 at 21:41

Hi Rob I can understand your frustration at the timescale involved in getting a diagnosis. The good news at least is that hopefully things will speed up and you will get the answers you need. Your biopsy is almost certainly a Template one which should be more accurate.You are definitely better off having the MRI first before the biopsy.

It took my husband 4 months from GP referral to the district hospital ( who no longer do Prostate cancer treatment just the tests) to be diagnosed. At least once he was referred to Leicester he only had to wait another 5-6 weeks for his operation.

I hope you do not have to wait much longer.

Best Wishes

Ann

User

Posted 10 Apr 2018 at 21:43

So good news is if it is cancer it is only on one side and you are getting the biopsy you wanted from the hospital urology team rather than a TRUS in the community. I assume that there will now be no need for GP Care to be involved any further. More waiting for you but at least you know the outcome isn't going to be too bad.

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

User

Posted 11 Apr 2018 at 15:30

The only comfort you can take from this farrago is that you are at least having a “gold standard” template biopsy guided by the images of your MRI scan, and that we are constantly told “most prostate cancers are slow growing”, so I doubt there will be much difference in your outcome between 42 days, 90 days, 120 days, etc.

I may have had my cancer for up to seven years or more.

They told me they found an “abnormality” on my MRI, but I had already twigged I had cancer. Fingers crossed you haven’t got cancer at all. You’ve got the kidney cyst as a bonus!

Moral of the story: Don’t get old.

Edited by member 11 Apr 2018 at 15:36 | Reason: Not specified

User

Posted 13 Apr 2018 at 09:46

Thanks again everyone for your concern and valuable inputs. I'm feeling a little more relaxed now waiting for an appointment. The calm before the storm no doubt. I did a little research to see what a kidney cyst might mean. If it's benign it could be partially the cause of my high blood pressure for the last 20 years. https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User

Posted 14 Apr 2018 at 09:17

I now have an outpatient appointment on 24th April 2018 with the Urology (Bristol Urological Institute) service. The letter says I will be seen by a (named) Urologist or a member of the clinical team.

There is no mention of preparing for a biopsy at this stage but hopefully that will follow soon after the consultation.

User

Posted 25 Apr 2018 at 15:43

Yesterday 24th April 2018 I attended my appointment at the Bristol Urological Institute. My sister came with me for support and asked some questions and took notes.

The Urologist went through my MRI results with us in some detail and explained that the abnormality on the left anterior side of my prostate is almost certainly a cancerous tumour. It was very close to one of the seminal vesicles and probably the cause of the episodes of haematospermia that I had experienced. (blood in semen)

For the record the Urologist told me that I did indeed have an multiparametricMRI scan.

Because of the position of the abnormality it was judged that a TRUS biopsy targeting that side of the prostate was a better proposition than a template biopsy. We asked about the risk of infection but the Urologist said that this was balanced by the general anaesthetic risks and that a TRUS biopsy could be offered sooner than a template biopsy.

We had some discussion about the treatment options and it seems likely that the options available to me will be external radiation or radical prostatectomy. As the tumour is on one side it may be possible to aim for some nerve sparing on the unaffected side. Timescales appear to be 2 weeks for the biopsy, 2 weeks for the results and possibly 6 weeks for surgery or other treatment.

While there, I was sent for an immediate ultrasonic scan of my kidneys and the results were that there were two aqueous cysts but these were quite common but harmless and no further treatment for them was required.

I was handed over to a specialist consultant nurse who explain some of the details about the next stages. As I was being handed over my sister noted the term T3 being used. We later discovered that this relates to the tumour possibly having broken out of the prostatic capsule. I gave permission to be contacted by telephone regarding progress and results.

So at least I now feel that I'm in the main treatment loop. The general feedback was that the delays I have experienced so far should not impact the outcome as in most cases prostate cancer progresses quite slowly. I wish I felt more confident about that.

Since first seeing my GP for the PSA test I have been experiencing some lower abdominal discomfort and mild back ache particularly in the mornings. After doing some internet research on the function of and potential problems relating to seminal vesicles, it seems that infections in these organs can give rise to similar symptoms.

Edited by member 25 Apr 2018 at 15:50 | Reason: Not specified

User

Posted 25 Apr 2018 at 16:51

Thank you for posting this. My husband and I are just beginning our journey. First PSA high followed by an MRI that has showed something. Not sure yet but my husband now is having a biopsy tomorrow. We have yet to understand sooo much and still have to master all the abbreviations etc. I wish you all the good wishes possible on your continued journey too

User

Posted 26 Apr 2018 at 08:23

Hi Pjgrinter,

I hope you find the support community on here as helpful as I have. I too was not familiar with all the terminology and am still learning fast. For me I find it helpful to understand every step of the process but others may prefer to leave everything to the professionals.

One good bit of news for your husband is that his treatment seems to have been handled in the right order i.e. MRI scan before biopsy. The thinking behind this is that the MRI scan allows the biopsy to be more targeted as they already know in what area to take the samples.

Please feel free to add to my thread with your experiences or start a new one and I will try to contribute where I can. There are lots of nice people on here who have been a great support to me in these early days. I wish you and your husband all the very best as you join this community that of course none of us really want to be in.

User

Posted 03 May 2018 at 17:09

This week I was offered a TRUS biopsy on 24th May. I was again stunned at just how slowly the wheels of the NHS turn and called back to ask if there was any way that the appointment could be brought forward given that I got my PSA = 33 result on the 26th February and my MRI scan suggested a T3B diagnosis.

I just got a call to say that they had received a cancellation so I now have an appointment for the TRUS biopsy next week on Thursday 10th May at 3pm. I also asked how soon I might get the result and they said it should be about one week after.

User

Posted 03 May 2018 at 18:16

I am so cross on your behalf - the lesson for other men is not to relocate to the South West :-(

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

User

Posted 03 May 2018 at 19:15

Thanks for your ongoing support Lyne I really appreciate it.

Edited by member 03 May 2018 at 20:07 | Reason: Not specified

User

Posted 11 May 2018 at 10:31

Wednesday 9th May 2018 (74 days after receiving my PSA 33.3 result) I visited my GP. I had originally made the appointment to complain again about the very long delays I have been experiencing and to discuss the possibility of having my prostate cancer diagnosis completed privately. Since being offered a cancellation on 10th May for a TRUS biopsy, it was agreed to continue with the NHS diagnosis process.

Coincidentally in the post on the same day came a copy of a letter to my GP from The Bristol Urology Institute confirming my diagnosis so far.

Diagnoses:

Likely prostate cancer. PSA 33.3. MRI abnormality in left peripheral zone, PI-RADS 5. Simple cyst on right kidney.

Management:

Ultrasound confirmed the simple kidney cyst needs no further management.

Given that the prostate abnormality is in the peripheral zone it should be easy to target with a transrectal ultrasound-guided biopsy.

Yesterday 10th May 2018 I had my TRUS biopsy at Bristol Urology Institute (Southmead). Using information from the mpMRI Scan results, 6 samples were taken from the apparently unaffected right lobe of my prostate and 6 samples from the left where the abnormality has been identified.

The procedure went well and apart from some discomfort once the local anaesthetic started to wear off I'm feeling fine with no signs of infection. Just a little blood in my urine and expected passing of blood clots from the rectum.

I was advised that the results will be available in 2 to 3 weeks.

I have to say that I have nothing but praise for the way that I have been treated by the doctors and nurses at the Bristol Urology Institute (Southmead). It's just the long delays between the process steps that I find very worrying.

User

Posted 19 May 2018 at 10:05

I now have an appointment set for Monday 21st May 2018 to get the results of my TRUS biopsy.

I know that the multi-discipline team meet every Wednesday to review all cases and I got my appointment by phone on Thursday. My appointment is with one of the main prostatectomy surgeons so am preparing for that to be one of, if not the only course of treatment offered.

My brother is kindly going to the meeting with me and will make notes and prompt me if I forget to ask any questions that I will prepare in advance to ask.

I'll update this thread soon after the meeting.

User

Posted 22 May 2018 at 16:52

21st May 2018: I had a consultation with a specialist nurse from the Bristol Urology Institute to discuss the results of my TRUS biopsy.

Biopsy Results: Gleeson score 3 + 4 = 7. This is about as good a result as I could expect at this stage given the MRI scan findings of an apparently cancerous tumour on the left side of my prostate close to the left seminal vesicle. The MRI scan report suggested staging as T3b N0 M0.

At the meeting two possible treatment options were discussed both with the aim of a cure: Radical prostatectomy or external beam radiation. Before prostatectomy could be offered I now need to undergo a complete body bone CAT scan. If this comes back clear then prostatectomy will be an option. If not then only radiation based treatment will be offered. The latter might include hormone treatment and or chemotherapy.

So I'm now waiting for an appointment for a CAT scan. I feel better knowing my diagnosis and that there is some hope of a cure. I realise of course that any treatment options come with significant side affects that will inevitably impact the quality of my remaining life.

User

Posted 22 May 2018 at 19:31

Hillsrob, I'm pleased you now have a better picture of what stage you're at. The waiting is so, so hard. We have another week before we find out the results of my dad's bone and MRI scan. Wishing you every luck with your treatment. Take care x

User

Posted 24 May 2018 at 13:26

Thanks for your good wishes lisabun. I hope things go well for your Dad too.

I now have an appointment on the 31st May 2018 for a NM (Nuclear Medicine) full body Bone scan and then a consultation on 5th June 2018 with a urologist.

I'll watch out for your posts and try to contribute where I can.

User

Posted 24 May 2018 at 13:43

It’s usual to have a bone scan. Much quicker than an MRI and less annoying. Mine came back clear. Hope yours does too.

If you opt for surgery, please do research the statistics and experience of your chosen surgeon, as they say high-volume surgeons tend to have better outcomes (continence, potency) than a guy who does one R.P. a week.

My Retzius-sparing surgery is scheduled for 4th June.

Good luck, John.

User

Posted 02 Jun 2018 at 21:30

First of all the very best of luck with your surgery John. Please keep us posted on your recovery.

I went for my Nucleur Medicine (NM) full body scan and it was not a bad experience at all. The radiologist did warn me that at the end of the first 20 minute sequence they would check the results and might need to do some further scans. Sure enough at the end of the sequence I could see random images popping up on the display panel and then the radiologist said they would continue with a pelvis scan. I was a bit freaked out by this as I thought they must have spotted something and wanted to do a more in depth analysis.

In the next sequence the machine rotated in steps around my pelvis.

The radiologist then said that everything was done and my referring doctor would get the report in about two weeks. When I said that I had a consultation with my oncologist urologist in a few days she said she would make sure the report was ready in time.

I'm now wondering if the final detailed scan around the pelvis is a normal part of a full body bone scan? Perhaps I do have reason to worry? In any case I will find out on Tuesday 5th June 2018.

User

Posted 02 Jun 2018 at 22:01

My Bone scan was in two stages too and I got tge all clear..

User

Posted 03 Jun 2018 at 09:17

Can’t remember how many stages there were in my scan, but as I said, much quicker, less claustrophobic and less annoying than my MRI.

Plus Her Loveliness was in the room with me so I could prattle away to her during it. The difference is that you are radioactive after the dye injection, and the scan just picks up on radioactive spots if any.

I had to laugh, on telly the other day at Kennedy Airport an Arab lady set off a hand-held Geiger counter at customs. The customs guys went mad, scanning her baggage repeatedly, thinking she was Al Qaeda with a dirty bomb about to attack New York. After about half an hour of panic, she told them she had had a bone scan a day or so before!

Surprising, as the isotopes they inject you with have a very short half-life, and just shows how sensitive those radioactivity scanners are.

Hope you get a good result.

User

Posted 03 Jun 2018 at 09:52

Thanks Jonathan and John. (I've now learned how to thank with the thumbs up button )

I wondered if I should have asked if there was anything to be concerned about. Some radiologists volunteer good news but instead I felt the body language was telling me something on this occasion.

Just 2 days to wait till I find out.

User

Posted 03 Jun 2018 at 12:23

Originally Posted by: Online Community Member

Thanks Jonathan and John. (I've now learned how to thank with the thumbs up button )

I wondered if I should have asked if there was anything to be concerned about. Some radiologists volunteer good news but instead I felt the body language was telling me something on this occasion.

Just 2 days to wait till I find out.

I have never known a radiographer to say anything about what they observed, and all my X-rays, scans have been clear, except for one mpMRI scan, obviously!

Her Loveliness says she does remember the guy coming in half-way through and moving something - maybe that was a second scan.

I hope you are worrying needlessly, but it’s only to be understood.

User

Posted 05 Jun 2018 at 21:34

My bone scan results came back clear. Just a few wear and tear issues which at 68 years young are to be expected. I can't explain what a relief that news is and how lucky I feel to have two options to make up my mind about in the next couple of weeks. Radiation route or surgery.

The urologist explained the radiation route and suggested that one option for me would be to start on brachytherapy with hormone therapy for 3 months then start external radiation. It seems Southmead like to use this combination of treatment where appropriate.

I need to wait 2 weeks to discuss surgery options and then make a decision soon after that. I'm going to say I'm available at short notice for a consultation if they get a cancellation. This has worked for me in the passed and I feel the need to claw back precious lost time.

Thanks again for all your inputs, support and good wishes.

User

Posted 05 Jun 2018 at 22:47

Hi Rob, I had my bone scan at Southmead, great hospital. My PSA was 38 on diagnosis after template biopsy, Gleason 4:5 T2c at WSM General, an all round good experience. I’m now awaiting RT at Bristol Haemotology and Oncology centre in mid July.

User

Posted 06 Jun 2018 at 12:30

Hi Alan, Thanks for sharing your experiences. I too have nothing but praise for the way I have been treated at Southmead.

I wish you the very best outcome following your treatment. I too am a regular cyclist although not so much since retiring last July. I plan to get back on the saddle soon not least to maintain my fitness for the treatment ahead.

User

Posted 06 Jun 2018 at 12:42

Rob

i was cycling an average 170 miles a week before diagnosis. I have noticed a loss of, shall I say, impetus?

I have cut down from 7 rides a week to 4 since starting hormone treatment and feel better for it

I hope to carry on at least some cycling during my 6 weeks Monday to Friday RT. I have been told by my nurse that some of the tiredness felt during RT is not purely physical, so not collapsing on the couch and pushing myself to go for a therapeutic bike ride should be done where possible and safely.

Both my Oncologist and primary care nurse agree my fitness level for a 66 year old is helping me through the mid phase of my PCa journey.

Weight gain around the waist is what I’m fighting at the moment!

Alan

Notification

PSA 33 but no apparent urgency for diagnosis - PSA33,Scans (CT / MRI / Bone scan),Biopsy

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