Concerns post RP @ 8 weeks

I well remember that same feeling of disappointment when I was told that my first post op PSA was 0.2. I chose to wait for another few PSA tests before choosing what to do next as the onco explained to me that initially it could be residual but he wanted to see how quickly the PSA changed. He said that if cells were left behind then a slow increase in PSA would indicate they were in the prostate bed and therefore could respond well to salvage RT but if the readings increased quickly then they were elsewhere and HT would be advisable. He also said that we could use both. Now this is going to sound strange to many but all through this PCA thing having cancer has never actually bothered me it has been trying to just get on with life while dealing with the side effects of treatment that has been the challenge. You have done well with recovery from the op and have managed the incontinence so now there might be a new challenge. While waiting for my RT I read the information from the hospital, took note of the wealth of experience on this site and then made my plans for the worst case scenarios. I have to say that I finished the salvage RT in June and didn't really have any side effects. I know they could arrive at some stage in the future and I will deal with that problem then. In the meantime I am waiting to find out whether the salvage RT has worked but it is not something I spend time worrying about as there are too many lovely things to be getting on with. If you do have RT rest assured that your team will ensure that you will have all the information you need to minimise any long term risk to your bladder or bowel. I have to say that I am glad I hung on to a few pads as this is the first time I have had a cold since my op in 2015 and a high energy sneeze still has the ability to to empty a fair drop of urine from the bladder.

I hope that your results turn out to be good but in all honesty for me the salvage RT has passed by pretty smoothly.

Kind regards

Kevan

Hi Paul I had adjuvant RT after my histology report showed positive margins even though my PSA was in the undetectable , i was offered wait and see go on radicals trial or early RT , after taking advice I went for the early RT as trials are showing promising results I am two years post op and still undetectable ( next result on Monday) I found RT had no real side effects apart from having to wear a pad again for a couple of weeks .all the best Andy forgot to say i have had no HT

Edited by member 07 Jan 2017 at 17:32  | Reason: Not specified

When I was diagnosed I was told that I had advanced PCa. This meant that RP and RT were non-starters for me. This will sound perverse but there have been many times since then when I've been almost pleased that I'm advanced! I haven't had to make the horrendously difficult decisions you guys have had to make and I haven't had to experience the disappointments when it has turned out that further treatments are required. My life will be shorter than would otherwise be the case if I wasn't advanced but my treatment decisions are binary.

I wish you all well but I haven't been where you are now and thus my advice/opinions are of no value to you.

Unfortunately, the best way forward is not always clear, even to the experts. My experience illustrates this. The advice given to me following salvage HIFU at UCLH was to start HT immediately as they interpreted my scan as showing cancer in an iliac node because it showed an uptake of Chlorine on MRI scan. I got another opinion from the Marsden in which they said they were not convinced that the amount of Chlorine indicated that this iliac node was cancerous and NOT to start HT at that point, an opinion shared by 2 other hospitals I had been involved with who had viewed my scans. I decided to see how my PSA tests moved before starting HT. Although my PSA has risen slowly, another MRI a year on has shown no further change in the suspect iliac node but a suspicious area in my Prostate. My consultant at UCLH said a year or so on that I did well not to start the HT when they suggested it. Had my PSA increased steeply, I would have started HT and might still do so at some stage but at least I will have had longer without it. It will be interesting to learn at my meeting with UCLH next month whether they propose to do a further scan or anything more on the Prostate, if not I may look elsewhere. My reasoning is that if further treatment to the Prostate can lead to any cancer there being eradicated, any subsequent rise would be due to the cancer being outside the Prostate where HT might then be appropriate.