Worried of Cornwall

There are lots of knowledgeable people on this site who will be able to offer advice. Someone will come along who has been or is in a similar situation to you.

You can alway ring the specialist nurses here for advice etc.

Get the "toolkit" from the publications section, you can either download it or phone for a copy.

When others reply to you click on their name and you will be able to see their journey with PCa.

Arthur

Edited by member 17 May 2016 at 19:39  | Reason: Not specified

This might not be the most helpful of answers but, in the final analysis, the decision has to be yours. That involves using the excellent resources on this site and also your specialists.

The thought processes I went through were to eliminate surgery as an option. That is not right or wrong but I looked at the potential side effects and decided it was not for me. I was then left with External Beam Radiotherapy or High Dose Rate Brachytherapy with a top up of radiotherapy. Initially I opted for the High Dose Rate Brachytherapy (the low dose option - ie seeds was not an option for me) and part of my reasoning was the very positive experience of my elder brother with this treatment route - he was diagnosed in early 2013 and his most recent PSA test showed undetectable levels. He also had relatively mild side effects.

I made a last minute change however. My brother forwarded me a press cutting from the Daily Mail outlining a new form of External Beam Radiotherapy. Instead of 38 sessions, this treatment involved only 20 sessions and was based on recent clinical trials at Clatterbridge (my centre), The Royal Marsden and Cardiff. Roughly the same amount of radiation was delivered but on a "dose painting" system whereby extra strong doses were delivered to the tumour site and lower doses to surrounding tissue. I was also to undergo 6 months hormone treatment starting before and then continuing during and after the radiotherapy.

I've had 16 of the 20 sessions and, thus far, the side effects have been as follows:

1) Initially some mild depression with the hormone treatment but this passed. I also get mild hot flushes and some breast tenderness.

2) With the radiotherapy, tiredness but I can drive myself to and from the appointments. I have had some mild bowel symptoms - mainly wind and mild constipation. On the urinary side I have had problems with flow but this has been solved with the use of a drug called Tamsulosin.

Now a massive health warning. My radiotherapy side effects are relatively mild, they can be worse for some people and others can more or less avoid them. I am retired but, if I were working, I reckon I could probably have continued to work with time off for the appointments. As I approach the end of the treatment, the tiredness is getting worse and I reckon I might have taken the last few days off if still at work.

So that's my experience. Read as many as you can on the site and have a good old think. Crucially don't feel you have to rush in making up your mind.

Edited by member 17 May 2016 at 20:04  | Reason: Not specified

I was diagnosed with T3a with spread to the lymph nodes and seminal vesicle , so surgery was not an option for me. I had 37 sessions of RT 3 months after I started hormone therapy. I finished RT in January 2015 and will continue with Zoladex until at least August 2106.

The RT side effects were manageable with medication , with the fatigue wearing off about 6-8 weeks after I finished. However is still have side effects from the HT (tiredness and teariness sometimes and hot flushes ) but again they are manageable.

I see that you are now retired which I think will help you with any recovery. I was working through the RT until the final two weeks when I was signed off work for 2 months. I have been able to drive throughout my treatment .

There have been ED issues which are now being addressed via medication ( Cialis ) and the use of a pump.

All in all I have no regrets with the path suggested by my medical team and am hopeful that the treatment will eventually be successful.

Good luck with whatever you decide.

John

Hello Harley and welcome to the site

My husband had low dose seed Brachytherapy in June 2014. We went for a follow up appointment last week and his PSA is 0.2 which his consultant was very pleased with.

If you click on my Avatar you can see his journey (It's very long as I tend to use it as an online diary of his events)

Pros and cons with all treatments. All you can do is research, ask questions of people who have undergone the various treatments available but also keep an open mind because not all men react to the same treatments in the same way.

Best Wishes
Sandra