Treatment Decision made........I think!

Hi Darren,

I was close to your age when I was diagnosed, very similar to your diagnosis. I spent almost a year agonising over the decision and saw staff at Mount Vernon, Addenbrokes and Royal Marsden. Almost 18 months after my diagnosis, I managed to get myself on the PACE trial for Cyberknife treatment at The Royal Marsden. 
I had investigated Da Vince robotic surgery at Addenbrokes and other options, finally went with Cyberknife as it fit my personal circumstances best. Everyone is different and it's not unusual to change your mind numerous times, I know I did. When I managed to get on the trial I thought that fate had taken over. I go through it and I'm still kicking almost 10 years later.
What I did end up with is a massive file of information about all sorts of treatment. All I can say is being as informed as you can be helps you to feel more in control of the situation and not feel rushed into making a decision you're not comfortable with.
Once I made my decision, I committed to it completely and began to visualise the outcome I wanted. I did asked all the consultants I saw what I could do to give me the best possible outcome regardless of my choice of treatment. They were kind and all said I could 'lose a bit of weight'. So I started cycling and going to the gym, lost a stone in order to get myself ready. I think that really helped as it also got me into as positive a state of mind as I could manage given the circumstances.
Whatever decision you make, I'm certain it will be an informed one and the best one for you. Being on this site helped me, hopefull you'll find it helpful too.

All the best,
RP

Hi Darren

Just to be clear even with the prostate and therefore the cancer gone please bear in mind that the cancer can return but then that's the same with any cancer really.

Hopefully in your case with those low stats it will be gone for good 

I have been on this site for about 3 years now and I do see people with more side effect problems with surgery rather than Radiotherapy.

The latest Radiotherapy is really very good, a targeted approach   . I know that it can produce other cancers later on but I went with that risk, am ok so far, since early 2017.

It would be good to see other people's views that have gone down the surgery route and now with no side effects.

The main thing that would  concern me would be ED problems at your young age of 53. 

Also , is active surveillance an option?

Regards

Steve

Hi,

It's an awful decision to have to make. I was 62 with a T3aN0M0, and opted for radiotherapy + hormone therapy, which was hard work (especially the HT!), but - touch wood - I am in remission, and other than a pretty complete absence of libido or function, I'm just fine and have no regrets.

I completely understand the "I want it gone" attitude, and had I been younger, with a T2N0M0, I'd have seriously considered surgery. With PCa, people no longer speak of 'cure', because it can suddenly reappear 10-20 years later, while many cancers can say that if you're clear for X years (usually 5), then it's all gone. So in some sense, you'll always be looking over your shoulder.

BUT PCa is often cured - there's just no way to know until the post mortem! But that does mean if you have a 'curable cancer' - you do, if the M=0 - then do choose a treatment that CAN offer a cure, because you only get one chance to cure, anything else is  second best. That means, at the moment, surgery or radiotherapy.

If you are offered active surveillance, be sure that it really is ACTIVE, because if it isn't watched well, the delay to active treatment may make it too late to be curable.

Good Luck, whatever you decide.

Hi Steve, I’m interested in your comment that radiotherapy can cause other cancers.

My husband had radiotherapy for prostate cancer 3 years ago. Recently he has developed a very swollen lymph gland in his neck which we thought was attributable to the prostate cancer. We were told just the other day that  cancer cells of unknown origin had been found.

thanks

Hi GK, sorry to hear about your husband.

It's something that I have read over the years that RT can cause other cancers years down the road.

I did think that any new cancers caused by RT would be in the area near the prostate ie bowel, bladder etc but not 100% on that.

I know that u have posted before, I can't remember your husband's stats, was the cancer confined to the gland or had it spread outside?

If it had spread outside then it's probably more likely to  that being the reason for possible return rather than the Radiotherapy.

I hope that he gets some more treatment soon.

Best wishes

Steve

Yes, it is normally going to be cancers in the area that the radiation has passed through or been close too.  What is your husband's PSA?  

Radiotherapy does occasionally cause cancer, but those cancers will be 'in the line of fire', usually the edge of the Xray field where cells had been damaged but not destroyed, and so mutated. It used to be much more common, but modern radiotherapy machines are targeted much better, and the main dose is now almost completely where it needs to be. In the old days when radiotherapy was blasted from one angle only, and lead shields were used to protect other areas, I once saw an xray showing a cancer along a straight line and a corner, where the plate had been poorly positioned and too much hit the wrong place. Much more sophisticated these days.

Hi Roger,

Many thanks for your post and Im pleased that your decision has worked for you. After doing yet more reading and hearing from people, I am still heading down the surgical route. In my area I believe that the procedure is the Da Vinci procedure but the Cybreknife is something I will now research. I am yet to speak to the surgical team as I have only just made the decision to follow that route.

Weight and fitness is something that I am already motivating myself towards as Im sure that I will be told that it will help. As you say its a state of mind boost and can only help with recovery.

I feel a little happier that I am now 'doing something'  even if that something may change further down the line.

keep well

Darren

Yes, that makes sense although radio therapy is more targeted than it used to be.His PSA was 75 at last reading 2 weeks ago. Gleason 9 although the consultant said that becomes less relevant when the cancer has already spread to other areas. I’ve read of PSA readings up in the hundreds though. Shows that the hormone therapy thus far is not keeping it under control as was hoped.

thanks for your contribution.

slowly gathering more info.

thank you all.

My brother in law was diagnosed with stage 4/5 cancer with spread to bones at age 54 - many years ago now but his PSA at times between various treatments went up into the thousands.  His consultant has told his wife and children when they meet at various cancer charity events that if he had had the treatments available now he would probably have lived longer so it just shows how much and how fast things are moving on with new treatments,  He died of Prostate Cancer just before his 69th Birthday having also successfully survived two strokes.  A year before his death they had a long holiday touring central USA in a camper van. So the treatments definitely gave him a great quality of life and he enjoyed life to the full.