Just diagnosed choice of treatment

Hi Pinny,

I echo Sandra's previous comments....

Until you have the full picture eg MRI PSA and Clinical staging etc it will be impossible for you to make any decision as to the best treatment path for you...

If you 'click' on members profiles you will be able to get some idea of the various treatment paths that they ( we ) have taken.

I chose the radical prostatectomy, but that may not be appropriate for you....

Best Wishes 

Luther

My Gleeson score was 8 and I elected to have the radical prostatectomy, this was carried out July 2013' this was not 100% successful and therefore had radical radio therapy in Jan/Feb 2014 as a back up treatment. Just had my latest PSA results today and it is undetectable.

One thing to consider when making your choice is that the radio therapy is possible after the prostatectomy but not always possible the other way round due to damage caused by rt. There can be drawbacks to both treatments so check the help pack on this site for guidance.

Don't rush the decision ask the questions you need answers to, remember it's what is best for you.

Whatever your decision I wish you all the best and a speedy recovery.

John

Pinny,
If you post the full details of your diagnosis under your profile when gleaned, this will help us have a better idea of where you are. You have obviously had a biopsy as a Gleason score has been given and doubtless had a PSA figure given but scans help establish how far the cancer has spread after which a staging is settled on. This can influence treatment options. Not sure from the way you have put it whether you have actually been offered RP or RT options or whether you assume these will be so.

Edited by member 21 Dec 2014 at 00:44  | Reason: Not specified

 "I said I would go with what the professionals recommendation"

Paul, you may get a treatment steer from your consultant but not all will do so and many will just tell you your options, perhaps say a few words on each and leave it for you to decide so you should be prepared for this.  Clearly, if for example there was for a good reason why you should not have a certain treatment due say to your having other heath issues that might give rise to problems, your consultant might well steer you away from a particular treatment. (It happened to me though for a different reason).  You will most likely be given time to decide but should be prepared to make you own reasoned decision.  Men reason in different ways.  Some just want the Prostate out, don't like the idea of a Prostate, albeit a treated one remaining in their body even if the risk of short to long term incontinence is greater.  They may also favour surgery because it means they don't have to keep attending a hospital every working day for EBRT for several weeks. They may also feel that if it is found that surgery doesn't do the job completely, RT can more easily and successfully be given than the other way round.  The risk of incontinence is less with RT than surgery but sometimes (as in my case another tumour may grow in the prostate) and in a few cases the RT may initiate other cancer, particularly of the bowel even years later.  Then there is the matter of ED which can be brought on by either Surgery or RT.  If the surgeon is able to save one or better still both nerve bundles, there is a good chance of erections in the short to medium term.  Men who have RT seem to experience ED over time. This is certainly not a comprehensive list but gives you some idea of some of the aspects to consider.  If you use the search facility you will get a better idea of the pros and cons of the various treatments to help you decide what is right for you.

Edited by member 21 Dec 2014 at 00:45  | Reason: Not specified

Hi

Frankly it's a minefield. I believe the outcomes for both radical treatments paths are similar. You may find the urologist steering you towards surgery and the oncologist towards RT.
Its not a good idea to choose surgery just because there is follow up RT should it be needed....you want to be confident that whichever route you go down that its with total curative intent.
Ask them questions about your dx...you will find they usually answer based upon statistics but you want their opinion on YOUR likely outcome.
Read the toolkit as recommended already as you need to be aware of the potential side effects of all treatments. You can then raise these with the medics. The surgeon may pride himself on his results but his stats for preventing incontinence and/or ED may be poor...ask him, they have to tell you, after all its your life.
What I would say is if you opt for surgery check out your suegeons experience.

As you will see from my profile I had RP followed by RT and I had a really experienced surgeon. I am fortunate as any side effects are quite minimal really.

Keep asking questions and good luck

Bri

Hi pinny1952,

My understanding is that whether or not a cancer is aggressive can be measured by the rate at which PSA increases. Mine went up 1 point in a few weeks, that was considered aggressive. Do you have other PSA readings to compare to?

Choosing a treatment option is a bit like being handed a red hot poker that is red hot at both ends and being asked to choose an end to grasp. No easy choice, and also both thoroughly unpleasant.

The specialist you speak to will generally advise what they can offer and do, that is in their interest. But, you should be able to opt, as I did, to ask for a referral elsewhere, especially if your specialist considers that that other option might be better for you. I was lucky, my originally referred to surgeon could not offer a robot as that NHS trust did not have one, but he very candidly supported that a robot might be better for me and my circumstances.

It is the most difficult choice you will make, and generally no second chances. When you have all the facts about your current condition, the rate of aggression, increase in PSA, the staging as far as can be determined from the MRI, your weight height and general fitness, then and only then can you make an informed choice about what to do.

It will probably help you enormously to have someone with you at meetings, with a notebook and a pencil to make notes and ensure that as an information bomb is dropped and you have to take that in and while in shock you possibly miss the next bomb, as I did, then at the end you can regroup and think about all that was said to you. With all the information you can make a choice.

Remember that the consequences of impotence, incontinence etc are all possible not guaranteed. Unfortunately there is not a box that you can tick to "NOT" have them.

My primary concern was to live, and I opted for robotic surgery and told the surgeon take out whatever he wanted to, felt he needed to, thought there might be a problem with, to preserve my life, I do not want to be coming back to see you in some months and have you apologising to me for leaving some bits in to keep me horny or dry and which curtailed my life.

Good luck to you, whatever you decide. And having decided, go for it 100%, don't look back and wonder or regret.

ATB

Dave

Edited by member 15 Jan 2015 at 22:58  | Reason: Not specified

Paul, when you say recovery time, what exactly do you mean? How long you might be off work or how long the side effects might persist?

Generally, men who have open RP are advised to have 12 weeks off work - John was dealing with emails and phone calls about 4 weeks after the op but his car insurance provider wouldn't cover him until 12 weeks after the surgery anyway so that was how long his sick note lasted. Men having LRP seem to be back at work withing 6-8 weeks, depending on how physical the work is and how continent they are.

If you were asking about side effects, different story and long answer.

Edited by member 18 Jan 2015 at 01:15  | Reason: Not specified

Firstly choose the treatment that is right for you, not your students.

I do not think you have said which surgery you are being offered.

I had Da Vinci surgery in April 2014. I was 99% dry 4 days after catheter removal back at work after four weeks and driving 1000 miles a week after six weeks. ED still an issue but things are happening. One reason for me choosing surgery over RT was the advice that I would be back at work in two - six weeks , as I travel in my work 3 days out of 5, the disruption of daily visits was potentially great with RT. I was fortunate that I was fit to work in four weeks.

As with all things NHS the advice can vary region to region.

Below are points from the literature I was give just before my op.

After 3-4 weeks gentle jogging and aerobic exercise.

Drive again when you are comfortable (usually 2 weeks after surgery). My medical team did verbally advise 4 weeks which I did adhere to.

You should check with your insurance company before returning to driving. Oops

Please allow at least 2 weeks before returning to work.

Most people are able to return to work after six weeks

Other types of surgery may be different and we all recover in different ways and speed.

Thanks Chris

Sorry to hear that you had a disappointing day. I wonder if Flexi is right to see if a referral offers better choices and more information on the different operations.

I had my surgery in Cheltenham and the team and consultant there really were very good, but I don't know how you go about getting a referral, maybe someone else can help you out there.

Trevor.

Good evening Paul

Good to hear that things are moving forward and that you have settled on your choice of treatment. Wishing you well with that and a timely recovery, but do take your time about it.

As mentioned we all respond differently to treatment and my own experience was four weeks after surgery before taking too much exercise on, and even then it was light walking (1-2 miles) for a week or two, then gradually I upped the distance a bit. Keep in mind that I had robotic surgery I do think the advice at six weeks really does need taking into account.

Take care, and seriously, don't worry about putting your feet up and enjoy being looked after. 😄

Trevor

Hi Paul
For what its worth here is my experience and "advice".

I had an LRP, it healed up uneventfully and I went back to work full time after about 5 1/2 weeks.

My experience was that for the first 3 weeks I just wanted to sleep and even though I had set myself up with things to do before hand I did not do many of them.

It was at least 2 weeks before I could sit at my computer and then not comfortably at first. Don't forget that you will have a foley catheter in and a leg bag so that will restrict any walking you do even if you feel up to it. Once the catheter was out I did more and the weekend before I went back was carefully doing some quite heavy DIY (I changed the the hot water cylinder!) which probably wasn't a good idea.

As you are having open surgery you will have a much larger wound than I had; something like a 10cm cut right through your tummy wall, which is held wide open during the op, that will take a long time to heal much longer than key hole. So keep your plans very tentative and listen to your body, Give the wound plenty of time to heal and don't try to do to much to soon.

I see you are a coach so if that involves vigorous movement remember that when you are moving about the whole weight of your innards is bouncing on that cut so you will need to limit what you do until it is fully healed

You will have to get your GP or specialist to sign you off and clear you to go back to work. Your employer should not let you back before that as it is unlikely their insurance would cover you being at work. My GP gave me quite a stiff interview over the phone including lots of questions about my job before he would sanction my return to work.

Another point to be aware of is that your car insurance will be invalid until your Doctor says you are fit to drive and the company may a minimum recovery time (6 weeks?) before they will reinstate your full cover.

As Trevor said "put your feet up and enjoy being looked after"

Good luck with the wait, the op and your recovery.
Best wishes
Andy

Edited by member 27 Jan 2015 at 18:33  | Reason: Not specified

Roy

All the best for today matey...

Wishing you a successful  procedure and a speedy recovery

Luther 

I hope everything went well and that your recovery goes smoothly, as a sports coach I am sure you know when your body is capable of taking tasks back on. If things take a little longer than you hoped just keep persevering and try to be patient. You may find your clinical nurse has taken your occupation into consideration when shortening recovery times for you.

Make sure you let us know how you are getting along

xx

Mo

Hope the op went well Paul and that you are recovering according to plan.
Best Wishes
Sandra

HI all

Just returned home yesterday following surgery Wed afternoon , went down about 2 at the ward by 6.45 surgeon told me  took a long time to wake up so amethysts had to work overtime monitoring me.

Had a mixed experience with quality of nursing at WYCOMBE HOSPITAL , one fantastic nurse called Fiona supported by HCV Kirsty , but the night shift I felt the care was poor .

Fiona got me out of bed after 24 hours , walking with in 48 hours achieved 4 laps of the hospital ward by Friday 10 pm.

Next day  walked 2 laps an hour  and feeling good , only problem I seem to be getting is a stiff back by sitting to much.

Will try to walk out tomorrow if weather good walk around the close.

Paul 

so happy to hear that you are doing so well. You must be quite a happy man right now.

xx

Mo