Treatment Experiencies

Hi Paul,

PCa is generally a slow developing disease and if this is thought to apply in your case, consultants may well be at ease with your taking quite a time in deciding on your treatment. There are situations where very early intervention will be recommended - where the cancer is believed to be about to break out of the capsule for example.

For some patients, surgeons feel that scans and a biopsy indicate that they stand a good chance of being able to remove all the cancer and sometimes this proves to be the case. However, in the event is sometimes happens that the cancer was more widespread than though and in such cases this may be followed up with RT. (Radiotherapy can be used to attack cancer beyond the bounds that the surgeon can cut. It was for this reason that my urologist, who headed the Multidisciplinary team in my case didn't want to operate and referred me to an oncologist.) So staging and other factors may mean one or more treatments may be ruled out. From a success point of view, there is not a great difference in outcomes between various treatments; what is more important is that treatment is timely and administered in a highly skilled way and in the case of RT using modern and preferably state of art machines. There are small risks with all treatments but more chance of incontinence and early ED with surgery than with RT. However, there is more chance of RT initiating cancers in many years time. RT can be given after surgery but few surgeons will remove a prostate that has previously been largely fried with RT.

I opted for EBRT plus Carbon Ion boost in Germany in 2008 as part of a study having been on HT for 7 months previously. My reason for this was that I was given a greater dose of radiation than I would have received in the UK with virtually all the Carbon Ion element deposited on the cancer. (EBRT deposits some radiation off target). Despite this, cancer was again found in the prostate in late 2015 and this was treated with HIFU in 2016, again within a study. I am presently awaiting results of recent MRI scans. Surgery was ruled out because of my staging. Results may have been similar had I had EBRT in the UK, who knows? But I feel I gave myself the best chance of success at the time having read a lot of papers and discussed with an expert on radiation as a second opinion.

For those that are suitable, Brachytherapy RT using radioactive seeds alone or with supplementary EBRT seems to be becoming more popular and have good results -see this treatment comparison site. Click on your staging and you can then get an idea of the range of treatments. Having said that I have seen other sites that indicate surgery is better for younger men - nothing seems to be straight forward and clear cut. You are an individual and could be at any point on the graph. Remember for instance there are different types of PCa, some more radioresistant than others for example. http://www.pctrf.org/comparing-treatments/

Edited by member 07 Aug 2016 at 14:21  | Reason: Not specified

Hi Paul,

I see you have put some of your stats in another thread (conversation) but have not yet shown these under your profile/bio which is often the first place members look as sometimes it helps to know this information before replying. If it is only put in a thread, over time effectively it can be lost.

Hello Paul.

You were told not to panic by your consultant so presumably he thinks it's a slowing growing pussycat.

Research well. Don't rush. Be sure of your choice then go for it.

Following a year of Active Surveillance at 73 my husband opted for Low dose seed Brachytherapy as he didn't want to go the surgery route. So far all is well.

Brachytherapy isn't suitable for everyone.

As has already been said any RT has the potential to cause problems further down the line (ie bowel cancer) and the younger you are the greater the risk because you'll likely live long enough to possibly develop it.

Brachytherapy has the same chance of cure as the other methods but please - don't rush into anything. After all, you (and your wife/partner) are going to be the one living with the possible consequences of any of the treatments.

Good luck in your choice. Please let us know what your results were

Sandra

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Hi Sandra,

What made your husband go for treatment after a year had the cancer started to grow or was he fed up of the stress every time he had a blood test, I must admit I don't know if I could cope with that, I think if I have the option I am leaning towards surgery,

best wishes to all

Paul

Did he ever change his diet, I have read that giving up dairy can help, also did he decide on the treatment just on the basis of the PSA or did he have another biopsi

Paul

Edited by member 08 Aug 2016 at 19:38  | Reason: Not specified

Paul,

If you click Dave's avatar, then 'profile', you will see he has detailed his histology which shows he had robotic prostatectomy

I only had 2 options, RT or surgery, after reading a post on this site about a guy who had a gleason of 3+4=7 he had the OP to remove the prostate when they checked it it was gleason 9 so that made up my mind, they don't know the real gleason score until they check it in a lab, sex is great but how can you compare to life itself as it is so short,

best wishes

Paul

I would check whether these clips might be used in the hospital where you are considering having your prostatectomy and if so whether they would agree not to use them on you if you are concerned about their use. Some people do seem to have experienced migration of one or more of these clips. I doubt very much whether many UK patients know what clips/sutures have been used on them! Here is one story. https://www.cancercompass.com/message-board/message/all,74403,0.htm

Clearly one wants to minimise risk as far as possible. I remember a few years ago there was a celebrity (can't remember his name), whose autopsy showed that a radioactive seed placed during brachytherapy had migrated so there are potential risks in various treatments.

I think it comes down to the skill and experience of the surgeon, you should always ask how many OPs he has done, he should have done at least 400, I asked my surgeon he had done 500, 

Paul

Keep it clean is the main priority, they are quite robust but do be careful not to catch the catheter, it would take alot to pull it out but it is uncomfortable if you accidentally pull it.

Whilst in hospital try too get two extra leg/ thigh straps.

Make sure the catheter is fitted correctly to your leg strap. The fastener should sit in the v of the y joint, many pictures show the fastener only round the pipe, this does not stop the pipe being pulled down.

My morning routine was close leg bag tap remove night bag. Remove straps from leg bag and tuck the tap of the leg back under the thigh strap.

Have a shower and using non scented soap or gel, wash the end of the penis and the first bit of the pipe. If applicable retract the foreskin and wash, remember to pull the foreskin back over the end, if you don't the foreskin can come up like a balloon. Use lube to get it back over and ice or frozen peas to reduce the swelling. A couple of days in and you will get more confidence in feeling and washing the area.

Once I had dried myself I would fit a new/ dry strap to the other leg and transfer the catheter to the other leg refit the dry leg bag straps. Alternating legs is recommended and it means you can dry the leg where the strap was.

Use a bag stand,bucket or bowl for the night bag, a bowl or bucket will save the carpet in the case of accidents.

I did get some stick for this but if you OH is attaching and removing the night bags buy her some disposable gloves and some chocolates or flowers, one suggestion was that marigolds count as flowers.

I wore pyjama bottoms at night to stop any tangles and also straped the night bag pipe around my ankle area to stop the pipe getting pulled out of the leg bag. The pipe should not come out if it is attached correctly.

A small squirt of instilagel or simalar will stop any discomfort at the end of the penis. I wore elasticated pants with short legs, briefs were be too tight and loose boxer shorts did not hold all the bits in place. Instilagel is a lubricant, anaesthetic and antiseptic ,I had a reaction to KY gel.

You may experience "by passing" when passing a motion this is where blood and urine pass between the catheter and the eye of the penis, slightly uncomfortable.

Talking of motions, avoid constipation and no straining to pass the first few motions, it could cause trauma to the urethral anastomosis / urethral joint.

Thanks Chris

Yes hospital supplied all bags etc, the only problem I had was my catheter removal was delayed by one day which left me a night bag short. Fortunately it was only a 10 mile round trip to get another bag. The catheter care is not a major problem,but you will have just had major surgery, only small wounds on the outside but alot has gone off inside.

Have a look at a conversation "swiftly moving on" for some pre op preparation tips.

Added

You are going to be dry within a week no need for nappies, think positive.

Thanks Chris

Edited by member 20 Aug 2016 at 18:36  | Reason: Not specified

I have read that instillagel can help stop the catheter rubbing, where can I get it from?

Paul

Paul...

The hospital should tell you all this and demonstrate it to you. I was given a catheter care sheet and the packs of bags etc also have instructions on use and care.

There is no problem showering and washing as long as you take care - yes make sure you have extra straps.

The bucket idea for retaining the night bag is excellent. Unless you move around a lot in bed then no real need for any other special measures.

KRO...

Edited by member 22 Aug 2016 at 17:59  | Reason: Not specified

Thanks all,

Just waiting for the OP now , just want to get it over with,

Paul

It is not a treatment for PCa - it is a sort of re-bore of the urethra through the prostate to ease urinary problems, a bit like a TURP. It sounds like they want to ease your bladder problems prior to RT to minimise the chance of you going into retention?

How did you all feel prior to surgery, I am getting pretty scared as the time is getting near, I am hoping for a cancellation and they call me in so I don't have much time to think about it, all sorts of thoughts going round in my head,

Paul

hi Sandra,

My brother in law had Brachytherapy, how soon after the OP did your oh have a PSA test, my brother in law has got to wait until Nov which is six months after the OP,

Paul

Thankyou, it seems it is about the same length of time until his first PSA, he is not worried as long as he does not have to go out, he is a funny bloke, sticks rigidly to a daily routine,
my surgery getting near now, 29th, getting nervous

Paul

Hi Dave,

I week until my op, feeling very nervous, can't get over the feeling of something will go wrong, I need some straight talking, I know you are good for that,

Paul

Thanks Chris

Paul

Hi KRO have deleted my messages,

thanks

Paul

Hi Andy,

How long was your OP, I have been told could be up to 10 hours, really hard to put it out of my mind, not getting much sleep which makes things worse

Paul

Thanks you have made me feel a bit better, I am not too worried about the catheter or incontinence as I am expecting it, it is just getting to post OP,

Paul