Feeling isolated

Hi welcome to the site nobody wants to be on, it would help if you could put your stats on psa, gleason score ect, from me being diagnosed on Sept 11 2014 , my operation was done on December 3rd 2014 , have you talked to the oncologist yet about RT, so more info would help , ask any question here as we have all been in your position . all the best Andy

Just to welcome you to the site Impatient.

I can understand that you are impatient to get this "alien" out of you and the days following a decision can be very very long.

If you are having no joy with your keyworker have you considered telephoning the surgeon's secretary (or the appointments line) to ask where you are in the queue? It's possible that the key worker is sitting on your request for an op or has mislaid his file so no harm in checking.

You may not get any joy but at least you would be doing something and I'm sure they are used to patients being concerned about speed.

At 4+3 = 7 for a Gleason score and the offer of surgery would suggest that it is all contained in the prostate and isn't going anywhere in a hurry, so I'm sure you don't have to fret about delays and spread.

My husband's score was 3+4 = 7 and he had no treatment at all for a year before he opted for his course.

I'm sure other members will be along to advise you

Best Wishes

Sandra

Hi Don fully understandable to be concerned and impatient if you have not heard anything yet. Good advice from the others and when you do see someone at an appointment it is always good to have a notepad and pen ready to jot down facts and figures together with pre thought questions.

To put your situation in perspective I was diagnosed last February 2015 with PSA 63 and was not offered prostectomy as my prostate was too close to my rectum wall so there was a danger of leaving a cell or two of PCa or breaching the wall itself.

My treatment plan had been discussed by a MDT (multi disciplinary team) and I was offered two years of Hormone Therapy( HT) and 37 sessions of Radio Therapy (RT) Due to unforeseen delays on my part I did not start RT until September and my PSA had dropped to 0.5, since completing RT my PSA is now 0.01 and officially undetectable.

I feel quite happy with the treatment and am glad that I did not have a prostectomy and have to go through incontinence issues and ED problems. There have been side effects to HT and RT but they are relatively short term and hopefully I will return to normal eventually.

Discuss all your options and weigh up what you might or might not have problems with, send for the toolkit on this site it is invaluable and all you have to do is telephone the number and request they send one. If you need Further advice speak to the specialist nurses here as they will tell you as it is and give good information.

You can ask whatever questions you like on this forum and there will be others that will answer with first hand information.

Best wishes for whatever path you take but remember you do not have to rush into it.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Hi Don,

Unfortunately, long time waiting fot tests/scans, treatment and results is a quite usual part of the NHS experience. However, PCa is generally a slow developing disease so some delay is not so likely to be critical as a patient naturally feels might be the case.

Some men and you appear to be one of them, just want the prostate removed asap and nobody here would attempt to suggest they do otherwise. The downside of surgery, depending on a number of factors, can be a varying risk of erectile disfunction and incontinenece ranging from short to long term as the main side effects. Advanced forms of radiotherapy generally provide similar success rates as surgery with less severe side effects, at least in the short to medium term, though hormone therapy usually accompanies RT and can introduce further side efffects. Having considered all aspects, some men do decide RT is the way to go. Asking whether you had seen an oncologist was not to suggest you change your treatment choice but whether you had fully condidered and evaluated all the possibilities including potential side effects.