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I'm looking for some advice about Radiation.
I am heading towards 78, I have been diagnosed with grade 9 and proposed treatment is ADT plus possible radiation, treatment to start after I've had a bone scan which would be hopefully in a couple of weeks or so.
I don't really want to have the radiation treatment, if I were younger yes, but I have been suffering from severe CFS for the last 8 years so I am physically weak although I'm still trying to get better. I don't want to go on living for a long time if my future is a continuing degeneration of physical energy although I'm well aware that "where theres hope theres life".
I'm told that ADT alone could keep me above ground for possibly another 5 years, would radiation increase that span?
Do I really need the radiation as well as ADT?
I would welcome some opinion.
Ken Vernon from New Zealand
I am not a doctor, but my understanding is that radiation or surgery are the only 2 treatments that can result in a cure. ADT is to slow down the PSA normally after it starts to rise after a failure of the 2 treatments. Sometimes ADT is used with radiation. I had radiation and ADT before and after, but now am taking nothing and my PSA is still under 1.0. PSA started at 76.
At your age and with your GS9, I would stick with ADT. Radiation might not do much good at your stage of the game.
That should keep you symptom free for at least two years and probably longer. When that fails you can go to ketakonazole for a few years more. These treatments have minimal impact on quality of life whereas radiation can be pretty rough and might not get enough cancer to extend your life.
Thankyou both for your comments. My urologist is scheduling an appointment with the radiation consultant to see if they think it will be beneficial - I'll leave a decision until then.
Ken
Aloha Ken,
OK, you've got 10 more years than I did when I made my choice in 2007. CFS is very difficult to pin down with respect to what is causing it. There are several papers that approach the idea that PCa and CFS are linked. From my experience, I'd say they are related. I also apparently developed Sleep Apnea in these past years since PCa. The CPAP machine is suppose to be here this week, so I can not yet confirm where my CFS came from but I am hopeful. If you have someone close that could watch you sleep for a few hours, that would answer some questions as to whether you might have Sleep Apnea.
As to whether you should have radiation like EBRT I don't know. For me it was extreamly difficult and at times beginning during treatment I wanted to quit. So I would just try the ADT, in the smallest dose possible, like every month. I could not handle the 4 mth shots.
If after a year you are doing well and perhaps gaining some energy, then think about some form of radiation.
I would look into getting a sleep study just to rule Apnea out.
No mater what was happening to me I never let more than a few days go by with out exercise. You need to start small and work up to 1 hour, 6 days/week. I mix a floor routine with offroad bicycle. The bicycle is very difficult right now as I can not use a regular bike seat, too painful. I am building a 4 bike wheel, 2 person, off road machine so I can sit in comfort and still feel like I'm out in the grass & rocks, back dirt roads, etc.
Your going to need to try several things. Hope you can find something that will give you the motivation to continue with this life. It can and does get better, I know, I've been way down, but I'm on my way back up.
We'll be thinking about you,
Joe
Thanks Joe
Well I can clear up the Apnea point straight away, I've been on a CPAP machine for going on 9 years, so thats not it. I think that my CFS has come from poor breathing. Its amazing how many people suffer all kinds of problems from poor breathing and not many people seems to know about this. I started to work on it recently and I'm making just a little progress.
Thanks for your views on radiation, can't say I like the idea either.
Ken
Aloha Ken,
You did not mention anything about exercise. Fessup, are you or are you not exercising? Programs of free weights for people 70 to 90 have proven that you can regain some of that motion and stamina.
I can't do reps of lifting more than 5 lb weights above my head because of weak elbow joints. I do use 10 lb weights below the shoulders.
Joe
Hi Joe - yes I have always tried to keep up some exercise. In the past I've had to be incredibly careful because only a small amount to much would cause me to seriously relapse. However since beginning these breathing exercises I'm now doing I have been able to slowly increase the amount of exercise I'm doing. Hopefully I will get a lot better with time.
Ken
Ken,
I think your basic question here is good and very appropriate for your situation. But I think you have framed it too narrowly.
My experience with radiation is that it has not resulted in any significant loss of quality of life. Neither when I was undergoing treatment or since. And my preconception, from reading the responses of others here, is that ADT would have been a substantial loss of the quality of life that I value. Loss of strength, bone weakening, hot flashes, diminished sexual interest, etc. But I don't know first hand about that.
Getting back to my initial words here, I bet that the devil is in the details, as they say. There are surely different ADT approaches you can take, some may be much less problematic than others. And with radiation, there is a dosage to be determined, and a heavy dose will probably lead to some real issues. So a lesser dose might do a lot of good without nasty side effects.
So, rather than looking at a specific decision, like whether to undergo radiation or not, talk to your oncologist(s) about the full range of treatments available, and I bet you come up with a good consensus approach, considering your concerns.
BillG
