Start of Journey - The Decision

User

Posted 22 Oct 2016 at 01:02

Hi I'm new to this forum having been recently diagnosed with Locally Advanced bilateral PCa with Gleason scores on the door of 9 and 9, PSA~4, stage 3A, negative and bone and body scan. I've spoken to the urologist at my local hospital - Bedford and an oncologist at Addenbrooks who after a further DRE gave my right lobe a free promotion to a early stage 4, although the scan taken earlier this month he said was inconclusive.

Based on my age 56, activity and previous general good health i seem to currently have the options of RP with some additional RT due to possible positive surgical margins or just RT, I have also been put on HT tablets to stop further spread and as probably a precursor to RT.

I now have to make a decision

Being an ex radio systems engineer i have also extensively researched the internet about the pro and cons of RP and RT and mortality rates etc and my brain is like a Russian athlete on steroids, it doesn't stop thinking.

However my heart says get the high grade PCa core out of my body now, whilst my head says with my early stage 4 there is no real benefit why take on the possible side effects of both treatments.

Most of the posts I've read have been about RP followed by RT if needed as the next line of defence.

My question / plea for your help, is any thoughts does RT work well on high grade PCas as a primary treatment and how would RT work when Prostate and seminal vesicles are removed ie no central target other than the urethra to radiate.

Finally there is a further possible complication in the size of my right tumour does not match my low relatively PSA suggesting i might have a high grade PCa it is low secreting, one for the future.

Currently feeling very sick and worried.

I've noted a lot of positive thoughts in this community so to end I would just like to say "Always look on the bright side..........."

Steve. Trouble

User

Posted 22 Oct 2016 at 16:27

Statistically, if everything else is equal, RT has exactly the same outcomes as RP in relation to recurrence within 5 years, recurrence within 10 years and the chance of still being alive in 10 years. Neither is more successful than the other overall. The differences between the two are:
- with RP you get immediate side effects which might get better over time (but might not)
- with RT you tend to get side effects developing over a number of years - often 5 - 10 years after treatment
- if the cancer has breached the capsule, RT would still get it whereas RP might not
- with RP you get some early reassurance on whether it was successful whereas with RT it takes 2 - 3 years of PSA tests to be really confident that it worked
- with either treatment, there is a risk that it does not get rid of all the cancer so whichever you do, you will be having PSA tests for the rest of your life.

Going for a combined approach means twice the risk of sife effects (some immediately and some not till later) v knowing that the bulk is out and hoping RT will do the rest.

The strategy often discussed of 'RP first means you can always have salvage RT if needed but can rarely have RP if the RT fails' is a persuasive one but bear in mind that statistically, if the primary treatment fails (whichever it is) the chance of ever getting full remission is much lower so the idea is to choose the treatment most likely to get you a cure first time.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Oct 2016 at 12:31

Hi Steve, welcome to the forum, I had a Gleeson score of 7 & my PSA level was 14, I had RP 11 months ago to remove my prostate ,after several blood test my PSA level never went to zero in fact it has been rising ever since.

I am currently waiting to have RT, 33 sessions in total, next line of defence as you put it, sorry can't be of anymore assistance .

James

User

Posted 22 Oct 2016 at 16:11

Hi Steve,

I was a T3A with Gleason 3+4=7. The Urologist who headed the MDT said he was very reluctant to operate as he didn't think he could remove all the cancer. He personally introduced me to the Urologist who was nearby who started me on tablets prior to HT with RT to follow in due course.

RT can treat beyond where the Knife can cut but some types of PCa cells are more radioresistant than others or are further mutating and becoming more so and it could be helpful to obtain the view of your consultant on this as regards you particular type of cancer.

Where there is a prostate ,RT will be specifically directed at this and suspected areas beyond whilst minimising collateral damage to nearby organs. Where a prostate has been removed the RT is more of a scattergun approach.

Barry

User

Posted 22 Oct 2016 at 17:08

When I was first diagnosed I did not really take in much, maybe just a personal defence mechanism for me? I missed all of the information about scores and so on, maybe I just blanked it out. All I wanted to know about was how to I get from the beginning diagnosis to somewhere better. Basically I had the choice between radio therapy and surgery. I had a consultation with the radio therapy consultant, who only confirmed what the surgery consultant told me. As I understood it then, if I went for radio therapy and the cancer came back I could not then have the prostate operated on. If I had surgery first and the cancer came back I might then be able to have radio therapy. After listening to the radio therapy consultant and hearing what it entailed I scooted straight back to the surgery consultant and said I'll go for the surgery.

My prostate was then removed by the da Vinci robot, I was incontinent for nearly two weeks and then I got back to normal. My only 'downside', can't think of the best word, is that I can no longer get an erection, but heh what the heck, I'm 72, alive, fit, in good health (I think) and every day I make the effort to enjoy my life. My wife and I have adjusted, getting older and eventually dying is part of life so I make the best of it while I can.

When at home I make sure I go out nearly every day and jog off road about 3-5 miles and when I'm away I enjoy long distance backpacking and camping. I eat normally and like to drink down the pub as well. I actually like my present lifestyle, much better than when I was younger.

Its a difficult time to go through but I hope my contribution is helpful in some small way. Good luck.

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User

Posted 22 Oct 2016 at 11:01

Hi Steve welcome to our group sorry that you have joined us ,I went down the RP followed by RT route ,As I understand my RT was aimed at my prostrate bed {where my prostate would have been if not removed) 33 sessions I was offered this as postive margins where found , hopefully someone can answer about RT only all the best Andy

User

Posted 22 Oct 2016 at 12:31

I am currently waiting to have RT, 33 sessions in total, next line of defence as you put it, sorry can't be of anymore assistance .

James

User

Posted 22 Oct 2016 at 16:11

Hi Steve,

Barry

User

Posted 22 Oct 2016 at 16:27

Going for a combined approach means twice the risk of sife effects (some immediately and some not till later) v knowing that the bulk is out and hoping RT will do the rest.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Oct 2016 at 17:08

Its a difficult time to go through but I hope my contribution is helpful in some small way. Good luck.

User

Posted 22 Oct 2016 at 20:24

Andy, thanks for your welcome,

if you don't mind sharing how has your recovery gone after RT.

Steve

User

Posted 22 Oct 2016 at 20:56

Essentially, you have been told the choice is between surgery plus some RT or only RT as a primary treatment. If you have the combined option you may have less radiation than you would from a full normal course of only RT. I would ask about this and any difference this could make regarding side effects. Also, it is likely that you will also be on HT for some time in either case which usually results in varying side effects. Again, you could ask whether it is likely that you would be longer on HT with the double primary treatment or with just RT, although in the event your progress may dictate this. You need as much information as can be gleaned to help you make a weighed up decision.

Barry

User

Posted 22 Oct 2016 at 21:09

Barry,

Thanks you for your thoughts and insight, when you say particular type of cancer, will this have identified when the biopsy was analysed, and the consultant that should have this information at his finger tips is the oncologist.

In your experience what is the best way of communicating with the system is it through the specialist nurses i have been assigned?

steve

User

Posted 22 Oct 2016 at 22:01

Lyn,

Thank you for your explanation, you seem to be fairly knowledgeable, if RT fails and prostate is still in place, and PSA level go up and assuming there is no spread will RT be used again? or do we then move onto another treatment before the last resort chemo is there a road map out there as to what the next option, or is this raised at clinic.

My fear is that i have "high grade core of Gleason score - 9" which may also be a low secreting variety as PSA was 5 but had dropped to 3.8 before HT, and my urologist has assessed tumour as what he would expect with a PSA of 20+

Steve

User

Posted 22 Oct 2016 at 23:12

Steve

In your initial post you asked how RT would work if the prostate had been removed. After RALP my PSA never became undetectable and therefore something else needed to be done. It might sound odd but one of the reasons I trusted my onco was because he was honest with me and said that they had no idea where the cells were and at that early stage there was no way of finding out. He explained that normally if the the PSA rose slowly then the cells were more likely to be in the prostate bed where the prostate had been. If PSA rose quickly then the chances were that the cells had spread elsewhere. If they were in the prostate bed the we could opt to use 33 sessions of RT directed at the prostate bed to hopefully destroy them. If it looked as though the cells had spread elsewhere then we could use HT that would basically hunt them down and hopefully kill off the majority and weaken the rest. We could have opted to use both as a scatter gun approach. In order to get a pointer we decided to hold off on the salvage treatment until we had more PSA results to inform our decision but also I had to wait until I had recovered bladder control which is necessary for RT. When we felt that the PSA results were giving us a steer we then opted for the RT. The initial PSA tests following the salvage RT are showing a 0.1 increase but it is early days yet and I will see the onco in another 5 months following a couple more PSA tests. THE RT was not a problem and at this moment I don't feel that I have suffered any real side effects from it. I hope this might be helpful in answering that part of your query.

Kind regards,

Kevan

User

Posted 23 Oct 2016 at 00:46

Steve,

There are at least 27 types of PCa and you are correct that the cores taken at biopsy help identify yours. Some are more radio resistant than others and some produce a higher or level of PSA regardless of Gleason.

Members have reported favourably on the helpfulness of nurses on this charity but they are not familiar with all the details of a patient's histology. It is probably fair to say that some hospital assigned nurses are better than others but should be able to find out possible answers to specific questions they can't answer. I never used them but before starting RT did a lot of research and sought answers to questions at a meeting I arranged with my consultant. I additionally managed to secure a meeting with a professor elsewhere whose published papers I had read and tracked down. He kindly gave me the benefit of his opinions on various treatments. This required my GP to make the referral. I have also found it can help to contact a consultant's secretary to obtain answers or arrange a meeting.

One of the questions I asked was about whether further radiation could be given to a previously radiated Prostate and back in 2008 when I had my RT I was told that this would only be given as a small total dose but perhaps larger fraction (session) to deal with bone mets, alleviate pain. However, there are cases now where further doses of RT are given but avoiding the previous RT route so as to try to minimise more collateral damage.

Mostly, HT reduces PSA quite quickly, (RT taking longer) and may be effective for months or years until the cancer learns to survive the lack of testosterone and any other form of HT that may have been tried alternatively or as a supplement. There are drugs and chemo to follow as appropriate and new drugs are being introduced or trialed which held hold cancer back. Your treatment will depend very much on how you respond, something that even consultants find it difficult to forecast.

Barry

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