High Testosterone / Prostate Cancer connection?

[pipmeister]

I have been clear of testicular cancer for 10 years now, and have been on testosterone replacement therapy for 7 years - Currently Nebido.

Today I was diagnosed with Prostate cancer, and I will be starting treatment soon. First scan on Friday, then another Monday and consultation early March after their Multidisciplinary Meeting.

My testosterone level has been running high for more than 6 months now (bit of a story to why that is), but today I heard the Urology Cancer Clinical Nurse Specialist say that 'testosterone is the enemy'.

Sorry that my quote from her is taken rather out of context, but I was wondering what questions I should ask at my next consultation. Is there a link between a high testosterone level (whether through replacement, or naturally occurring) and the onset of Prostate cancer?

Pip.

[nickohs]

Oh Pip, ffs.

I am sorry old friend that you have been diagnosed with Prostate Cancer after the battles you fought to get help for Testosterone Deficiency.

Prostate Cancer does not get caused by Testosterone, but it does make it worse.

If it were caused by high Testosterone levels research would have shown it by now because that was the old wives' tale.
If you recall the appeal to your PCT, the urologist sitting there was saying just that, while suggesting he was happy at 6 nmol/l despite his Osteoporosis.

Indeed recent research suggests Prostate Cancer may well be caused by LOW Testosterone.

I'm thinking of you old friend.

Good luck with the treatment and keep us up to speed please!

all the best,

Nick

[pipmeister]

Hi Nick,

Thank you for your continued support.

After I have got through my imminent treatment, my concern is that Urology will attempt to control my testosterone down to a level, which they consider to be appropriate.

I did ask yesterday if Endocrinology with be present at their Multi-Disciplinary Meeting. I didn’t get a straight answer, which I take as a no.

My now former Endocrinologist discharged me from his care back in January 2011, and handed the blood monitoring over to my G.P. – this goes some way to explain how my testosterone level was permitted to be above normal for a while now.

I did emphasize yesterday that for my general well being, I need to keep in work, and continue to cycle.

So Nick, you can understand my reservations, considering whom I will be dealing with - yes he is still at the hospital, and will possibly be performing the surgery.

Many thanks

Pip.

[nickohs]

Hi Pip,

Provided the Cancer is stage 1, that is confined to the prostate, there is research to show Testosterone therapy can be administered.

Good luck my friend

best wishes

Nick

[pipmeister]

An update:

My Gleason Score from the Biopsy was 3+4=7 (Moderately aggressive) while both the Bone Isotope and MRI scans were clear. I agreed to Robotic Radical Prostatectomy, and had surgery 22nd March.

I was made aware that I would be incontinent for some time (anything up to 6 months or more), and that I will probably not be able to get an erection again.

There were some unpleasant issues like a Flexible Cystoscopy the day before the operation, which enabled my Consultant Urologist to have 4 pictures taken of the inside of my Urethra and up into my bladder. The Urethra is cut through and rejoined afterwards during the process to remove a Prostate. The nerves and muscles need to slowly repair, which is why I will be incontinent for a while. Some guys never regain any continence.

The Surgery took 4 hours and I had problem breathing afterwards. The operation area is pumped with gas to enable the Consultant to work. I think this gas remained inside me sitting under my diaphragm, which prevented me getting any air into my lungs – that was bit scary!

Anyway rather surprisingly, the Consultant was happy for me to remain on TRT during the whole process, although the Urology Cancer Clinical Nurse Specialist didn’t seem happy with this decision.

I have made good progress so far - I am now dry at night and down from 6 to about 3-4 Tena Pads a day. I have returned to work, but I cannot cycle yet. I tried sitting on a bike last week but I started to pee blood again, so I need to leave cycling alone for a while yet.

I have now had my 6 week follow-up Consultation with the Surgeon, who told me that he was please with the surgery. He has cut as near to the cancer cells as possible (which will help retain some nerves for continence) but appears to have cut out all of the cancer. My PSA went from 4.03 down to 0.05. The Gleason Score remained the same at 7 - which would indicate that there were no more cancer cells lurking when I was diagnosed, that were not detected at the time. This confirms that the Multi Disciplinary Team were accurate with their suggested treatment.

I currently will not require any Salvage Radio Therapy – result!

I now have surveillance with a PSA test in 3 month’s time – the level needs to remain super low.

Pip

[nickohs]

Pip that's great news even though you are suffering the after effects!

Its great you have a Urologist who is up to date. I catch myself thinking back to the Uro at the Royal Berks the day of your complaint hearing...sounds totally different and you can take a lot of credit for that. Standing against the status quo as you did has no doubt led to a much more open Urology department.

Stay positive my friend.

all the best

Nick

[pipmeister]

Thank you Nick,

The view & practice of Urology at that hospital does indeed seem to have changed for the better.

You remember the opinion of the Urologist at my Local Resolution meeting? He no longer performs surgery, but is the boss of my current Consultant. Below is the detail of the follow up letter to my G.P. from my Consultant. Some of what is written here is of little consequence to this site, but the last sentence is rather inspiring.

Quote, “I reviewed this man six weeks after his Robotic Radical Prostatectomy. He is doing very well and is down to about two pads a day. His stream is reasonable but perhaps not as strong as it might be. I have told him that if it deteriorates we may have to do another Flexible Cystoscopy to check that he doesn’t have any Bladder Neck Stenosis.

His histology showed Gleason 3 + 4 prostate cancer (same as his Biopsy) with clear margins and his PSA is 0.05. I think it is reasonable for him to continue with his testosterone replacement given that is surgical margins were clear and I have arranged to see him in three months time.”

Well there you have it. I think that the (text book?) view of the Urology Cancer Clinical Nurse Specialist disagrees with what he said, but I am pleased to have this in writing from my Consultant.

Pip.

[BeachTech]

Was your doctor doing routine PSA tests while you were on TRT? I am on TRT and the doctor test my PSA about four times a year. Typically PSA levels rise years before prostate cancer develops.

[pipmeister]

Was your doctor doing routine PSA tests while you were on TRT? I am on TRT and the doctor test my PSA about four times a year. Typically PSA levels rise years before prostate cancer develops.

I was discharged from Endocrinology in Jan 2011 and my blood monitoring was handed over to my G.P.

My PSA was taken along with my Testosterone as follows:

July 2011 - PSA 3.1, Testosterone 35Nmol/L
Oct 2011 – PSA 3.7, Testosterone 37Nmol/L
Jan 2012 – PSA 4.03, Testosterone 50’sNmol/L

13th Feb 2012 Biopsy on Prostate – Diagnosed with Cancer 2nd Feb 2012.

It is my view that General Practice do not have the wherewithal to monitor Hypogonadism effectively - although in hindsight, I can see that I should have insisted that my rising levels were better managed.

Pip.

[BeachTech]

I was discharged from Endocrinology in Jan 2011 and my blood monitoring was handed over to my G.P.

My PSA was taken along with my Testosterone as follows:

July 2011 - PSA 3.1, Testosterone 35Nmol/L
Oct 2011 – PSA 3.7, Testosterone 37Nmol/L
Jan 2012 – PSA 4.03, Testosterone 50’sNmol/L

13th Feb 2012 Biopsy on Prostate – Diagnosed with Cancer 2nd Feb 2012.

It is my view that General Practice do not have the wherewithal to monitor Hypogonadism effectively - although in hindsight, I can see that I should have insisted that my rising levels were better managed.

Pip.

My GP is awesome. However, feels that he knows everything and can therefore treat everything. With him, when I insist on a refereal to a specialist, he will do it, but only if I insist. (sidenote: I had tennis elbow. My GP gave me three cortizone shots over a year. When I went to a specialist after it wasn't improving, the specialist flipped out, saying that two should have been the absolute max, preferably only one. Then he showed me all the damage that had been caused by the shots on an xray.)

At first, my GP was handling my TRT. It was all over the place. It wasn't until I went to an Endo that it finally stabilized. TRT should, IMO, always be handled by an Endo.