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Get a PSA test - please

User
Posted 05 Sep 2015 at 16:07

Hi everyone.

I had no symptons but after reading a newspaper article decided to have a PSA test in May 2013. Result 6.4

I had an MRI scan 21/5/2013 which showed "something"

I had a needle template Biopsy July 2013 and diagnosed with Gleason 3+3 which deteriated to 3+4 following a further scan and biopsy dated May 2015 being on active surveillance in the meantime.

I had brachytherapy at the specialist brachi centre in Guildford , Surrey on 14th Aug 2015.

In my opinion brachy is by far the best treatment for early stage cancer - but I was not originally offered this until I asked. It is free on the NHS and costs approx £20,000.

My main message is to try to encourage any friends to have a PSA test.

Kind regards

Ray

Edited by member 06 Sep 2015 at 21:02  | Reason: Not specified

User
Posted 05 Sep 2015 at 18:12

Hello Ray and welcome

Glad you are trying to be pro-active as far as friends and relatives are concerned.

My husband was like you Gleason 3+4, PSA of 6.3 and was on active surveillance for a year

He also had seed brachytherapy , just over a year ago and has been relatively free from side effects

Best Wishes
Sandra

Edited by member 05 Sep 2015 at 19:21  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 Sep 2015 at 21:42

Hi Ray welcome to the group sorry your here, hope your treatment is a success . Andy

User
Posted 06 Sep 2015 at 02:03

Hello Ray,

Hope the treatment proves successful. It is good to be happy with what you decide to go with; was it high dose Brachytherapy or Brachytherapy with seeds? The general view is that the best treatment for PCa is the one an individual considers best for him having first considered and researched all the pros and cons of various treatments and discussed these with consultants. Some treatments can be ruled out in some cases for various reasons but men come to different decisions on treatment as there is very little difference between successful outcomes, though potential side effects can differ more. Many men opt for one of several kinds of surgery, not least because they don't want an affected Prostate inside them, even a radiated one and for other reasons. Also, though not widely available, HIFU has it's addvocates.  So care must be exercised in saying one treatment is far better than another, even professionals can take different views on this, particularly as there are at least 27 types of PCa and each individual case can present a different situation.

Edited by member 06 Sep 2015 at 02:40  | Reason: Not specified

Barry
User
Posted 06 Sep 2015 at 19:27

Hi Banjoman,
great to hear that you were pleased with your treatment option - brachy looks great for men that are suitable.

Perhaps you could edit your post to remove the name of your consultant - we don't have many rules on the forum but naming medical professionals is a no-no.

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

User
Posted 06 Sep 2015 at 19:39

Hi ,

Thanks for reply Sandra . Best wishes to your husband in the future.

Thanks also for your reply Barry. I agree with most of what you say. However :

When I first saw my oncologist he said "we can offer you a radical prostectomy or external beam therapy " There was no mention of brachio. I eventually chose seed brachio at a different hospital (88 seeds) .It has been suggested to me that the first option is a relatively inexpensive operation as is beam therapy.

After carrying out considerable research there seems no doubt among the experts ( consultants) that the long term effects of a prostectomy or beam therapy are greater than brachi.

Kind regards

radioactive Ray

 


User
Posted 06 Sep 2015 at 19:45

Hi LynEyre

I knew it. I thought I would do something wrong.

Not being computer savvy how do I edit my initial post

Regards

Ray

User
Posted 06 Sep 2015 at 20:57

Hi Ray,

Click on the pencil icon at the side of your post.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 07 Sep 2015 at 03:00

Hi Ray,

A local hospital is likely to only suggest options they can provide and there have been cases where the local PCT's or CCG's have refused to fund a form of treatment outside their area, even if they cannot provide it themselves. I have always advocated men consider all their options, even if it means travelling, (which may or may not rule this out for some men). This is where research on what treatments there are, where they can be had and how suitable they are for you as an individual is worth considering. You did well to find and have a treatment that fitted your circumstances. Certainly, Brachytherapy is a good form of RT, particularly at an early stage, though not without risk of side effects 'if a man is suitable.' The Guildford center sets out suitability requirements in their web site and says some patients may be better suited having other forms of treatment. Your original post would have been best similarly qualified. Many experts consider surgery is the 'Gold Standard'. This was the opinion of my second opinion who was and maybe still is, an adviser to the Government on radiation treatments.

In the past we have had men tell us that they had Proton Beam which they considered the best treatment even though they had to go abroad and pay for it. It is enormously expensive in the USA where they have the most experience of this treatment. Incidentally, Brachytherapy is less expensive there than surgery and much less than External Beam.

Treatment refinement is an ongoing thing which makes relative comparisons difficult because it takes 10-15 years of follow up to assess how successful outcomes are and for longer term side effects to be evaluated. As regards RT, IMRT then IGRT, Rapid Arc, and Cyberknife among others are some of these. Though not RT, HIFU, Cryotherapy and Nanoknife are other possibilities that are being refined and will be contenders.

I started my research in 2007 and practicing my own philosophy, had my primary treatment, (IMRT with Carbon ion boost), in Germany within a study. in 2008. Diagnosis came too late for effective surgery or Brachytherapy and I knew with a T3A that it was a long shot that my treatment would provide a cure though I believed it gave the best chance. I have therefore tried to keep abreast of developments and what is available in the UK and abroad. I recently had HIFU as a salvage treatment and have had no side effects though still need to have some further treatment for cancer in an iliac lymph node.

Men arrive at different individual conclusions regarding what is best for them. Age, medical contraindications, willingness and suitability of having an operation or not, considering RT as back up to surgery being easier than the other way round, recovery time, convenience and treatment time, aversion to surgery or any form of RT and attitude towards likely side effects are some of the various factors that men have to weigh and often come to different conclusions. In short, it can be 'courses for horses' when it comes to treatment choice.

Edited by member 21 Jan 2016 at 01:30  | Reason: Not specified

Barry
User
Posted 08 Sep 2015 at 21:55

Hi Barry,

Thanks for your reply.

to be honest , my knowledge of how the system works , the analysis of advice given by consultants and the prognosis for the future is far less than yours.

You are doing an absolutely magnificent job in informing .

Unfortuanately I did log on to this forum until too late.

Let me hope that I did make the right decision.

I will be returning to tennis next week ( 5 times a week ) to keep the other bits of the body reasonably in shape!

All the best in the future to yourself.

Ray

 

User
Posted 20 Jan 2016 at 21:28

Just an update.

I had a low dose seed brachytherapy operation  (88 seeds)  on 14/8/2015

My PSA at op was approx 8

On 22/10/2015 my PSA was 2.23

On 11/1/2016 my PSA was 1.39

I would like to hear from anyone in a similar situation What their PSA levels were after op.

My Questions also are :

- Am I heading in the right direction ?

- After a few more months what should my PSA level be ?

- In the future do I rely solely on PSA levels or are future MRI scans or biopsies required.

Regarding post op symptons I will say this :

- They are much less than I thought.

- Tamulosin are not very effective even if one takes 2 a day ( as I was recommended to )

         The 3 methods I found far more successful to have a pee were :

         - Sport . After the 1st tennis set I needed a pee and it was free flowing.

         - Hot bath. works wonders.

         - sexual stimulation of the penis ( cannot go wrong )

 

During my " recovery period " I have not really had any real reportable symptons to mention.

 

Please let me know what your PSA readings were post op.

 

Thank you

 

Banjoman

 

 

 

 

 

 

User
Posted 21 Jan 2016 at 02:05

Hi Banjoman,

Good that you are making progress with minimal side effects. No doubt somebody who has had seed Brachy will be able to relate their progress but it does not follow that outcomes will be the same as yours. RT, however administered will continue to work for up to about 2 years. (It works by not only killing some cancer cells immediately but by damaging their DNA which inhibits creation of new cancer cells when they divide and the old ones die off (apoptosis). So PSA should continue to fall but difficult to forecast, different cancers, possibility of mutation and other variables. What often drops PSA very quickly early on is where men also have HT. I don't know if you have had this or are still doing so - there is a lack of info under your Profile Bio which is a useful quick reference place for members.

Barry
User
Posted 21 Jan 2016 at 09:31

Hello gain Ray.

My husband had the seed Brachytherapy and if you click on my name you can read his journey.

A couple of months ago we had his latest PSA down from 6.3 pre op to 0.3

I've copied and pasted a wodge from his profile to save you going right the way through it so I hope it helps.
Also check out Kennts

21. 8. 2015
Latest PSA result. Now 0.5 which is down from the previous one of 0.9.
The previous one was given to us by a trainee surgeon who told us that PSA will now start to rise because of the "bounce" and it wouldn't go any lower than 0.9

Hope he reads his books a bit more carefully since his information was inaccurate.

PSA is unlikely to go below 0.5 as this is regarded as "zero" by the hospital's machine

31. 10. 14 PSA was 1.8
05. 02. 15 PSA was 1.6
01. 05. 15 PSA was 0.9
21. 08. 15 PSA was 0.5

ED is still helped by Sildenafil, although on occasion we can enjoy ourselves without it, albeit the erections are not as strong and don't last long.
It's a bit of a boost to his ego anyway.
No longer using Tamsulosin, in fact his need to pee is more frequent but doesn't appear to be having trouble going.
Bowels are a bit urgent but no mucus as reported by some who had Brachytherapy.

6th November 2015
John has just received the latest PSA results and they are down to 0.3 (from 0.5 last time)
Heading in the right direction. Most things are back to normal or just require a little "help"

So it's still early days for you yet and yes, your PSA is heading in the right direction. Down is always good !

Edited by member 21 Jan 2016 at 09:32  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 21 Jan 2016 at 21:24

Thank you so much "Johsan* and "man with PC" for your replies.

I had no idea one could click on names and get each persons history.

Re "man with PC" I learn that these seeds can remain active for 2 years. I thought this was 6 months. I had no HT and was not offered any. It seems from your profile that you are keeping well on top of things and know the correct questions to ask.

Re "Johsan" our past problems appear very similar. I will be looking for my PSA to be less than 1.0 in 3 months time and of course most importantly to look on the bright side of life.

Happy new year to you both and everyone else on this site.

Kind regards

Banjoman

 
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