Hi, my numbers are T2c NO MO. Like many others, I am currently reviewing treatment options. I've seen the oncologist and will see the surgeon in a few days. Until seeing the oncologist, I had thought that surgery was the most likely route for me, partly because I had been told (by someone whose views I respect) that my relative youth and fitness (I'm 61) would probably make this the best option for me, because radiotherapy has more side effects in the very long term. The oncologist didnt challenge the view directly, but did say that so far as external beam radiotherapy is concerned, the view that younger people may eventually experience more significant side effects is a bit outdated. Has anyone else come across this debate? Any views?
Interesting D, u got me thinking now, when I get home going to check to see what my T2 was just before treatment started in 2017.
I do remember when diagnosed in 2013 think was 2 tumours, going to check , small size , went on AS , then 2017 went to 3 tumours, one near the gland edge, so left it a bit late really, still ok at the moment though.
Steve
Hi Steve. I don't want to cause any worry. I just considered it important to know that T2c could be a grey area. I did quite a bit of research around the T2c classification, but was subsequently unable to get a satisfactory answer. The person on Reddit (I think) was more persistent than me, and contacted NICE directly, but was unable to get a definitive response, other than discuss it with his consultant.
I think as a precaution we have to ensure that the treatment we opt for is also suitable for higher risk. I did discuss this with the oncologist and she sought to reassure me that in my case the treatment we both decided on was suitable for my situation. It then comes down to trust!
Of course as we all know, no PCa treatment comes with any guarantees. We try to be as informed as we can and then make the best decision we can.
D
Just by way of update, for anyone who is interested, I’ve opted for radiotherapy. Such evidence as there is seems to suggest that life expectancy is the same for both surgery and radiotherapy, but that with regard to other key outcomes (principally sexual health and continence) radiotherapy fares slightly better, with the principal downsides being the longer treatment times and the possibility of side effects from the accompanying hormone therapy (albeit that most, though not all, of these effects are likely to be temporary).
I’ve learned alot through the research and thinking process, but I can’t help thinking that whilst patient involvement in decision making is very much to be welcomed, the NHS could make the decision task much easier by laying out the pros and cons of each treatment route much more comprehensively, including, for example, information on the statistical probability of the principal side effects. In this respect by far the best tool I could find has been “Predict Prostate”, accessible through the Cancer Research UK website. It doesn’t tell you everything you need to know, but its a good starting point. Even it, though, could be improved by adding more detail (on the side effects associated with hormone therapy, for example) and also by making it clear what data is not available. An example of the latter is that, as I understand it, the PotecT survey data is not stratified by age and general health at treatment start date and there is no equivalent study available which does. I could have saved a good few hours of research had someone told me that at the start.
Anyway, thanks to all those who have contributed to this thread. Treatment starts tomorrow. I’ll no doubt pop back to this site at key points over the coming months.
Good Morning Higher1
Thank you for the update - I hope all goes well for you - please keep us updated with your progress and if you have any questions do come back to us.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi D, After HoLEP, my PSA dropped to 2.8 from a consistent 9.8 (highest 13.1). When it creeped up in October 2023, it eventually ended up at 4.2. My understanding is that post HoLEP, PSA is generally expected to be about 1. Just got my last results and my PSA is now 1.68. Very happy with this, as is my oncologist, although she did mention not to be distraught if this should go up a bit - or further down. She said it can take a while until it settles. Made sense to me considering pre-therapy, my PSA bounced around a lot. Next check up is July. We'll see how it goes. Hope you are well.
Higher1. You have arrived at the point that some of us get to after all our research. I say 'some of us', because a considerable number of men don't do the research. At least those of us who do, generally are knowledgeable,and therefore at peace with our decision.
You say, "evidence as there is seems to suggest that life expectancy is the same for both surgery and radiotherapy". Surprisingly, the latest research seems to show that this is the case for 'all' or even 'no' treatment. However, it isn't just 'life expectancy' that we have to consider, but the possibility of 'recurrence' due treatment failure. This then leads us on to the issue of the concomitant of earlier metastasis and all that entails in terms of QOL going forward.
It is also a question of balancing treatment harms. 'Primum nocere' (first do no harm) has been at the forefront in cancer treatment, including PCa. This has led to experimentation with radiation duration and dosage, that is currently going on at different centres. There is a move towards reducing duration. There is of course also the treatment reduction cost element in the mix.
You touch on HT. Particularly as a mature male, the not insignificant health side effects of HT were a highly important factor in my decision tree. I wrestled a long time with this.
I am interested in your agreed HT and RT regime.
Good luck going forward.
Dedalus
Good morning Joe2005.
Thanks for sharing your first PSA result. It is of interest because of our similar HOLEP experience, our previous PSAs being virtually identical, and also similarities in RT sans HT treatment.
I am only 1 week post RT, but will report back in due course.
Where PSA testing is regarded as a crude measure pre treatment, it now becomes highly significant in terms of assessing efficacy, and a predictor of recurrence.
Your PSA level will continue to move towards your nadir. You will know, that apparently a good result is to stay below 2ng/ml of that individual nadir. PSA bounce is also significant to consider. It can sometimes cause unnecessary alarm both in the patient and medics, and on occasion, an inappropriate rush to further treatment.
I am well and feeling quite good (touch wood) so far. Hope you are too.
D
Hi all, recently diagnosed with prostate cancer Gleeson 3+4 T2C inside the capsule. Been offered various but the two main are removal and radiotherapy, I was very interested to read a guy in here (Joe2005 I think) talking about LINAC MRI RT at Royal Marsden. Does anyone have any more info. I see many worse cases than me on here and sympathise with all as we all have our separate worries. My main at this time is ED. My wife is only 35 and there is no way I would want her to live in a sex less marriage at that age. We have a 3 & 5 year old and live a great life I’m very afraid this is going to smash it up in the long run.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007