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Salvage RT - any advise

User
Posted 30 Oct 2016 at 19:14

Well, 13 months on from surgery my PSA has started to rise. Ok, it's only up to 0.18 but that is from 0.09 only 3 months ago and .06 3 months before that. So, with the rapid rise I have been advised to go for Salvage RT, at this stage I am not sure if this will be in tandem with Hormone therapy - I should find out at my planning appointment in the next couple of weeks. All this I am okay with, not happy but okay. I have hunted around to try and find out as much as I can about this and especially the side effects, I suspect they are very similar to RT targeted on the prostate but would appreciate any advice / info from others who have undergone salvage RT.


Mike


 

Mike
"We know what we are, but not what we may be."
W Shakespeare.
User
Posted 30 Oct 2016 at 23:36

You can only plan for what might happen - tiredness tends to come on towards the end of the course of treatment and the GP should give you a sick note if you find are becoming too tired to drive. I think the tiredness tends to be worse for people on HT at the same time although as I said, John only found that he occasionally needed an afternoon nap in the final week or so.

Some find that urgency to wee or loose bowels are a problem; that could be difficult on long distance journeys but you can buy a portable wee bottle to keep in the car/wagon. If you drive in places without many toilet options, it could be more problematic - J was doing the M1/M62 so there are service areas.

Does your employer know? They should do a risk assessment so that they know how they can support you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Oct 2016 at 08:35
Hi Mike
I finished salvage RT 4 months ago and I had 66Gy over 33 sessions. I would agree with Lyn that you go prepared to deal with the side effects and hopefully you will be like quite a few of us who had no major problems. By week 5 I was a bit tired but nothing major. Lyn is also right in that as it could affect your ability to drive safely some of the time,your employer should carry out an assessment under Managing Occupational Road Risk. This should result in a plan for dealing with any possible side effects that you and they are happy with as will remove some of the worry for you.
All the best to you.


Kevan

Edited by member 31 Oct 2016 at 08:37  | Reason: Not specified

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User
Posted 30 Oct 2016 at 21:15

The side effects are exactly the same Mike - have they told you yet whether you will have 37 sessions (usually at 2Grays each) or 19 or 20 at a higher dose? John had 20 sessions at 3.2Gy which was a trial at the time to see how high a dose they could go without causing too many side effects but I think it is more common now.

He breezed through it - was lucky that the hospital booked all the appointments at the start so he chose the first slot of each day, went in at 8.30 and then carried on to work. He didn't need any time off at all although he did nap a couple of times on his desk towards the end!!!! He also managed to still go to the gym most evenings and played rugby on Saturdays - he was very fortunate not to have any side effects or problems at all.

The hospital will give you advice re diet - some men are told to go on a low fibre diet while others are told the opposite - I think it is partly determined by how gassy you are and where your prostate bed lays in relation to your bowel. Almost everyone is told no fizzy drinks, no caffeine, no alcohol. John stuck to his diet sheet rigidly.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2016 at 22:54

Thanks Lyn, the figure that the registrar was talking about was 33 sessions but she didn't give any strength (one more question on my list for the planning app't) I think all the warnings about side effects may have got me more worried than is really necessary, they really go to town on what might happen. I was concerned about working through the treatment though, not because I would have any problems at work but I do a lot of driving and tiredness & driving are not happy partners!


Mike.

Mike
"We know what we are, but not what we may be."
W Shakespeare.
User
Posted 30 Oct 2016 at 23:36

You can only plan for what might happen - tiredness tends to come on towards the end of the course of treatment and the GP should give you a sick note if you find are becoming too tired to drive. I think the tiredness tends to be worse for people on HT at the same time although as I said, John only found that he occasionally needed an afternoon nap in the final week or so.

Some find that urgency to wee or loose bowels are a problem; that could be difficult on long distance journeys but you can buy a portable wee bottle to keep in the car/wagon. If you drive in places without many toilet options, it could be more problematic - J was doing the M1/M62 so there are service areas.

Does your employer know? They should do a risk assessment so that they know how they can support you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Oct 2016 at 08:35
Hi Mike
I finished salvage RT 4 months ago and I had 66Gy over 33 sessions. I would agree with Lyn that you go prepared to deal with the side effects and hopefully you will be like quite a few of us who had no major problems. By week 5 I was a bit tired but nothing major. Lyn is also right in that as it could affect your ability to drive safely some of the time,your employer should carry out an assessment under Managing Occupational Road Risk. This should result in a plan for dealing with any possible side effects that you and they are happy with as will remove some of the worry for you.
All the best to you.


Kevan

Edited by member 31 Oct 2016 at 08:37  | Reason: Not specified

User
Posted 31 Oct 2016 at 19:59

Thanks for the replies, I have let work know the situation and once I have more info from the planning appointment I will be meeting with HR dep't et al. It sounds like the best bet is to follow doctors orders and deal with each day as it comes, hopefully my experience will be a good one.

Mike
"We know what we are, but not what we may be."
W Shakespeare.
 
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