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Anton Schwarz and Karen live in England. He was 52 when he was diagnosed in February, 2008. His initial PSA was 4.19 ng/ml, his Gleason Score was 7a, and he was staged T1c. His initial treatment choice was Non-Invasive (Active Surveillance) and his current treatment choice is Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

Am a fairly fit (swim for 1/2 hour daily). Company Director of an Engineering group (laser cutting and fabrication). Married with 2 children (Boy 16-1991 & Girl 13 -1995)

A routine medical assessment picked up a PSA of 4.19.

I saw my GP who was inclined to leave it. I requested referral to a specialist (luckily I have med insurance). Urologist advised biopsy. First was inconclusive in one sample of 12. Second was positive in one sample of many.Gleason 7 (3.4) Staging T1c MRI shows T2 at most M0 N0 cancer - contained in gland, peripheral signal (small/low) on RHS and unidentifiable possible signal on LHS.

Urologist very strong advice (almost insistent)for surgery (keyhole) which is his speciality. Oncologist also advised radical prostatectomy - particularly as my mother had breast cancer and he was concerned with re-emergence in the future.
Brachytherapist states that I am suitable for all main curative options. Due to see HIFU expert in July. (Surgeon also does HIFU but I regard him as my surgeon so prefer a second opinion)

My current feeling (end June 08) is towards Brachy. because of reduced side effects (in probability terms). I am aware of possible re-emergence and am researching salvage options. I am also fairly confident that the situation is improving in terms of research and resource.

I hope to decide before a major family holiday in July and aim for treatment end of August (to ensure fitness by the time the ski season returns!!)

I will keep you posted.

Thanks
Anton

UPDATED

October 2008

Had an enhanced MRI scan (end August) which shows no evidence of cancer. Am due to have prostate mapping end Oct(co-ordinate biopsy) to determine if there are any other cancerous areas. If not then I may be eligible for focal therapy as part of a trial. The likelihood is that this will be HIFU but a new laser treatment has been floated as a possibility.

Later: Just to clarify as my last update is perhaps unclear.

Focal Therapy is currently being investigated whereby in cases where the cancer is localised it may be possible to just treat the cancerous area rather than the whole gland. This would hopefully result in fewer and less drastic side-effects.

My specialist (Mark Emberton - UCL London) is using HIFU (and I believe there is a laser treatment - although I'm not sure if I would want to be the first human to try it!!). There are also trials (possibly in the States) using cryotherapy.

My own situation is that the enhanced MRI showed no areas of cancer. All this means is that there are none large enough to register. (over 0.5cc I think) I still have the original biopsy result showing PCa cells. I have now had the prostate mapping biopsy ( template guided co-ordinate biopsy) and await results. This could show one or more small localised areas, and therefore allow consideration of focal therapy.

It could also reveal multiple foci over the gland and therefore push me down the route of whole gland treatment.

Good luck and I'll keep you posted.

UPDATED

December 2008

Hi - I've changed my current treatment to active monitoring as I'm still involved in research and don't feel any urgency to make a specific treatment choice.

The results from my prostate mapping biopsy, unfortunately, revealed that there is cancer on both sides of the gland. This means that I am not eligible for the focal therapy trial. The results confirmed that it is at very low volume and that gleason is 3+4.

Mark Emberton has suggested treating one side (HIFU) and then monitoring for a while (possibly years) before treating the other side. The thinking is that the space between treatments may allow some healing/recovery of the erectile nerves on the first side to give a better chance of erections after treating the second side.

I'm not in any rush and intend to see the Brachytherapist end of January for further discussions. My latest PSA is 1.7, down from 4.10. I don't know if this is good or irrelevant and await further advice.

I'll post when I have more info. Good luck to everyone!!

Anton

UPDATED

June 2010

I have since had a another enhanced MRI scan in February 10, 2010 which again showed no locations of PCa (this just means that they are too small to register as we know that they are there) This was followed by a round of consultation with my two consultants (David Bottomley - Brachytherapy and Mark Emberton - Focal Therapy) both of whom agreed that a continuation of active surveillance is appropriate. I have planned another MRI in about 12 months.

On the PSA side the news is less certain (as ever perhaps!) The full story is:

Feb 08 - 4.19
May 08 - 4.0
Nov 08 - 1.7
Jan 09 - 1.3
Mar 09 - 1.4
May 09 - 1.8
Aug 09 - 1.8
Nov 09 - 1.9
Feb 10 - 2.6
May 10 - 4.5

As you can see a substantial drop (which could suggest that the original 4.19 was triggered by an infection and therefore I was lucky to find PCa early) has been followed by rises with a possible sharp jump in the last 3 months.

My first reaction is that this could again be triggered by other causes than PCa, so I will get another PSA reading in about a month or so before considering any action. It is probable that even if this does signify a significant change that it is still slow growing and very early stage, so there is no rush to make a decision.

One thing to watch out for if you have Medical Insurance. I have discovered that they will only cover costs for Active Surveillance (e.g. scans etc) for a limited period - in my case 5 years from date of diagnosis. They will still cover cost of actual treatment after that date but any ongoing monitoring falls on us.

Cheers and good luck to all!!

Anton (You stay here and guard the prince!)

UPDATED

July 2011

My PSA fell back again and is showing small increases more recently.

May 2010 - 4.5
Jul 2010 - 1.7
Oct 2010 - 1.7
Jan 2011 - 2.0
Apr 2011 - 2.2

Still no symptoms. I had another enhanced MRI in February 2011 and for the first time a possible tumour locus was identifiable, but still small. We have agreed a further scan in September 2011 to confirm or otherwise the February scan and will report after that.

Cheers, Anton

UPDATED

November 2011

I have had another Enhanced MRI which shows no definable change since February i.e. approx 5mm lesion on left peripheral zone. Gleason 3+4

PSA
Jul 2011 - 2.7
Nov 2011 - 2.1 So still seems fairly stable.

In these circumstances there seems no need for further biopsy and both consultants have agreed that continuing current regime seems worthwhile. So another scan in February and continuing 3 monthly PSA suits me.

Cheers, Anton

UPDATED

April 2012

Had another enhanced MRI in March 12.

This shows no change i.e. a confirmed tumour but very small volume on left hand side.

We feel that, as there are no symptoms and PSA remains relatively low and stable, there is still no urgency to activate treatment. I will keep monitoring PSA every 3 months and have scheduled in further scan for 12 months time.

Cheers, Anton

UPDATED

March 2013

PSA updates:

Jan 12 - 2.8
Apr 12 - 2.7
Aug 12 - 2.8
Nov 12 - 2.3
Feb 13 - 2.7

Had another enhanced MRI in Feb 13. Interestingly the area on the left which was starting to show some definition at the last scan appears to have become less distinct. This does not mean the cancer is reducing but might mean that that area was highlighting for another reason.

In these circumstances and with the PSA profile still low there seems no reason to chose treatment and we have decided to continue with Active Surveillance leading up to another scan in about a year.

Cheers, Anton

UPDATED

April 2014

PSA updates:

Jun 13 - 2.8
Sept 13 - 2.5
Dec 13 - 2.5
Mar 14 - 2.7

Had another enhanced MRI in Feb 14. No real significant change and looks to be quite a stable situation.

Decided against any biopsy - no need to disturb the wee fella!

We have decided to continue with Active Surveillance leading up to another scan in about a year.

Cheers,

Anton

Keep on keeping on!!

UPDATED

March 2015

PSA Updates

June 14 - 2.9
Oct 14 - 2.7
Jan 15 - 4.8
Feb 15 - 2.6

The spike in Jan appears to have been an anomaly and the graph of my PSA over time, excluding the spikes, shows a slow steady growth in PSA which is probably par with normal increase with age.

Had my annual MRI in Feb 15, which again showed no significant change, so on we go with Active Surveillance. The MRI is done in a machine with 3 Tesla field.

So overall it looks like boring is good!!

Till the next time

cheers

Anton

UPDATED

April 2016

PSA Updates

May 15 - 3.9 / Jul 15 - 2.7 / Nov 15 - 3.4 / Jan 16 - 3.4 / Mar 16 - 3.6

Gradual increase in PSA no worse than might be expected with age. Annual MRI also showed no progression, so happy to continue with Active Surveillance. Maybe no news is good news??

Cheers and good luck.

Anton

UPDATED

June 2017

PSA Updates

Jun 16 - 6.2 / Jul 16 - 3.3 / Oct 16 - 3.3 / Jan 17 - 3.6 / Apr 16 - 3.6

The higher PSA in Jul 16 was probably anomalous, perhaps a minor infection. Overall we see a gradual increase in keeping with aging.

Annual MRI showed no change or evidence of any progression. Also no indications suggesting any grading change, so decided against biopsy.

Rewind and repeat!

Cheers and good luck.

Anton

UPDATED

October 2018

PSA updates:

Jul 17 - 3.9 / Nov 17 - 4.5 / Feb 18 - 6.4 / May 18 - 7.1

Since Mid 17 we have seen a steady rise in PSA.

However the annual MRI in Feb 18 showed no evidence of progression and in fact suggested a pretty stable situation.

Consultant suggested that size of prostate (60 to 70 cc) may be contributing to higher PSA.

Over the last year I have experienced more occasions of frequent urination and difficulty in urinating. I asked consultant about this and he agreed to do some ultrasound and a voiding scan.

This revealed no obvious problems but did confirm higher than normal retention.

It was agreed to try a combination of Alfusosin (a muscle relaxant to aid urination) and Finasteride (to reduce prostate size.) If size reduces it may reduce PSA also.

I have been on this since July. Urination has improved generally although still with occasional (fewer) problems. Side effects of Finasteride have possibly been reduced libido, although do still experience erections and sildenafil still works.

Will have another PSA soon and report.

Cheers to all and good luck!!

Anton

UPDATED

November 2019

PSA updates:

Oct18 - 3.5 / Feb 19 - 2.5

On the face of it the reduction in prostate size, as a result of use of finasteride, may have reduced PSA levels.

However:

Scan in March 19 showed a new focus on the right hand side which might indicate that progression was now sufficient to register.

It was decided to have another biopsy concentrating on the right.

Results confirmed that there were signs that the cancer was progressing.

Considered radiotherapy inc Brachy and surgery. Eventually opted for robotic assisted surgery under Tom Walton/Nottingham.

Because there now appeared to be more disease on the right I was advised that incremental nerve sparing surgery might not be possible on that side so that it was expected that nerve spare might only be possible on the left. This would give an approx 50% chance of retaining/recovering spontaneous erections. To be honest, in the overall scheme of things survival was the bigger priority so that seemed a risk worth taking.

Because of planned hol in Canada (brilliant by the way!) surgery was on 23rd Sept. Went well. In the end they did achieve a partial nerve spare on the right side. More importantly, the pc appeared to be organ confined and gleeson score was not upgraded.

Home after 2 days (could have been 1 but for reaction to morphine). Catheter for 10 days, which (obviously) isn't pleasant, but can be managed and you can go out with planning. Removal of catheter was a key step and you need to be prepared for a degree of incontinence, use of pads etc.

I believe that the real key here is doing the pelvic floor muscle exercises for as long as you can before the op. You can't do them when catheterised but start immediately it is removed. Make sure you get advice from the continence clinic/nurses as soon as you opt for any treatment.

The next challenge is erections! Drugs and devices will definitely work but spontaneous erections could take some time as the nerves will have been damaged in the op and take up to 2 years to recover. The importance of spontaneous is probably more critical the younger you are (haha??!!)

At the moment prognosis looks ok but there are challenges to be dealt with!

Good luck to all.

I am happy to discuss my experiences but you are the only ones who can make the decision about your own situation.

Cheers,
Anton

UPDATED

February 2023

Still here and well!

PSA testing every 3 to 6 months continues to show negligible reading.

Big advantage of no prostate is that peeing is straight forward (almost like a teenager!) However, do still get the occassional unexpected drip.

Big disadvantage is that erections are not! I can get erections but struggle to sustain them. The various drugs help but tend to trigger indigestion for me. There are signs that it is slowly improving.

On balance, 3 years after surgery, I am fit and healthy in most ways.

cheers

Anton

UPDATED

August 2024

PSA testing 6 to 9 months - still undetectable.

Erections still not great but slowly improving. Really don't like using the various drugs because of acid reflux.

Again, on balance, generally fit and well!

cheers

Anton

Anton's e-mail address is: antonschwarz4 AT gmail.com (replace "AT" with "@")


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