Should I wait until stage three before having radio therapay

Hello Peter,

Firstly commiserations. I am in a not too dissimilar situation to yourself and also have some difficult decisions to make regarding commencing treatment ( EBRT ) vs no treatment. it is difficult. You/we run the risk of some pretty nasty possible complications. As I inderstand it, what the Doctors are trying to do by treating, is slow the progress of the disease down to give you a few extra years of life during which they hope some better cure-rate treatment might be developed.

Whether the quality of that extra life is something that you will consider acceptable is an individual choice.

For my part I hope I too can defer treatment for at least a year or two. I have posted on the American 'YANA' site ( 13/2) and that lead to a couple of very interesting reads you might like to look at.

Anyway, all the best. Dudley

Hello Dudley

Since reading your message I have had 40 minutes with the oncologist and am now as confused as you. He tells me

1. That with a gleason score of 9 my cancer will almost certainly have spread but, as yet , the metastises are too small to be picked up by the scans

2.They still don't know if the cancer spreads from the primary source or whether ,once it is out, it spreads

from the metastases

3 He thinks it is better for me to have radio therapy as a belt and braces precaution and also because

the cancer just might not have spread yet

4. I may have to wait up to six months for radio therapy because of the high demand!!

Against all this I have to bear in mind that if my GP had his way I would still be in blissful ignorance of the fact that I have cancer at all as he discourages PSA tests.

By the way can you give me more info in the US website as I couldn't find it on Google

All the best

Peter

Hello Peter,

Reading between the lines, it seems you are having a TURP? and I hope you will not have to wait too long for that.

Which procedure, will take a few months to recover from; and so it will probably not seem too prejudicial to not start EBRT until 6 months hence

.

Regrettably I'm a bit pushed for time at the moment but I will correspond more fully about the psychological aspects of our condition after I've seen my Radiologist on Thursday.

In the meantime the site is ' You Are Not Alone Now ' acronym Y A N A. But just a word of caution if I may. There are all types contributing to the forums... Some neurotic, some who appear to have swallowed a medical dictionary and apparently know everything and some who are clearly crazy or B S-ers. Like the guy who cycled 200 km 3 weeks after a TURP ! ( Yeah, right. )

You should see my post amongst those, hopefully, less worrying. A thread on the first guy to respond's answer leads to a very detailed account of the progress of untreated cancer from go to woe.

Take care of yourself Peter and try still, to enjoy life. Personally, I am making the effort to view every day as a celebration of life itself.

Dudley

Radio therapy has its own pros and cons.And when it comes to prostate care you should not take any risk.It is best to consult with a health professional.

Thanks

Hello Peter, I was diagnosed a bit earlier than you, with psa about 9. I had prostatectomy to attempt a cure, but it had already broken out of the prostate. The joy of having prostate out is that you get a good idea of what the spread is, as any 2ndaries will still emit psa, which should have gone to zero if all were surgically removed. In my case it was clear they were very active, so I agreed to have further treatment which included hormone therapy, radiation and chemo. The radiation is relatively easy going and I would recommend you get on the list.

I don't mean to alarm, but if you don't act, it is usual for cancer to spread beyond the area treated by the radiation therapy (which is only in the vicinity of the prostate ). During any waiting period I suggest you have the hormone treatment to slow any growth and spread. It is pretty tough though. It gave me a whole new respect for menopausal women.

I am quite bitter and twisted about the testing thing. If I had been found a couple of years earlier I would be in a better place, conversely if I had been left (as your GP thinks is ok) I would have died in 2013. That is the best guess stat from the growth rate and av longevity. My oncologist is a fun guy .

I guess you can tell I'm on the side of aggressive treatment of prostate cancer both medically and via diet. I'm happy to chat. All the best, David.

Thanks David,

I had decided to withdraw from the forum as it was tending to depress me, but I was alerted to your response in my emails. Many thanks for your advice. It is in line with what others are telling me, as well as my oncologist, so radio therapy it is, just as soon as the NHS can fit me in. Good luck and best wishes, Peter

Hi

i was diagnosed with Prostrate cancer in 2009. geeson 8 stage 4 and given 12 months to live. tried to get me on a trial but i refused. Hade 4 weeks of radiation and yes its not untill you come to the end of the four weeks you feel the effects. Bleeding sorne tireness. I went on to Zoletex untill last year when they said it had stopped working and went on to watch and wait which i hated. i have to know where i am. I was told again 12 months.and went down hill for a week or two. however soon came back and went on to Abiraterone which im told is £800 a week.free to me,. The cancer has shrunk back and I have side effects but im still alive.

My advice to you is this. do you want to play russian roulet with yoiur life. it might be to late by the time you make your mind up. to stay alive you take it as it comes my friend

Dear Peter,I understand you are not on the site anymore as it depresses you.I normally avoid them especially the support groups.I just wanted to say with a gleason 9 get as much treatment as you can as fast as you can.IMRT radio therapy is the best in the world.Go on line and find a hospital that does it and go there.

Dear peter,Do not wait one moment! With a gleason 9 and nearly 17 psa your cancer is super aggressive.When medics say it is contained within the prostate that is not strictly true.Microscopic cells can and do escape either through blood vessels , tissue or in the lymph nodes.i do not suppose you know if your lymph nodes are free of cancer as you have not had surgery.Why did you not have surgery?

i have had surgery and radiotherapy.I would advise you to have radiotherapy asap if surgery is not an option.Look on the internet and choose a hospital that give IMRT radio therapy.You can ask as well when they do the scan for accuracy for the IMRT to inject a special dye to see the state of play.As i said your cancer is extremely aggressive do not delay!With imrt the side effects are not too bad i am just about back to normal after 8 months.

Hello James 87879,

Forgive me for responding James,  but although I'm not 100% sure on this,  you may have well-meaningly patched back into this particular discussion at a point,  preceding your earlier contributions.

(  Note :  PeterJ is now either finished or almost through his course of 35 RT's ).

And incidentally James,  I don't think PeterJ has said,  and perhaps may not want to say,  why he was not a candidate for surgery.

( And whist wishing to not personalise this post in any way,  in my case which is not too dissimilar from PeterJ's,  I was told the tumour, due to its location, was inoperable).

Kind Regards,

Dudley