Recently diagnosed.

Hi Bootsy11

My husband had surgery 6 weeks ago today and apart from the incontinence he is doing really well. He elected to go down the surgery route after discussing it with friends and relatives who had travelled the same journey. Our GP also advised him to go down this route.

One of the reasons for the decision was wanting to get the thing out in one go rather than having months of HT and daily visits to a hospital in another town, with all the daily prep for treatment. Also the knowledge that if necessary radiotherapy is an option post surgery but surgery may not be an option after radiotherapy. We looked at the side effects for both options and bowel and urinary issues were also a risk for radiotherapy and the hormone therapy comes with another set of side effects. Also for radiotherapy daily bowel prep may be required to ensure that the prostate is kept in the same position for accuracy as a full rectum can move it. 

Although my husband is 69 and fast approaching 70, the surgeon who is a professor, said that he was relatively fit and seemed to be steering him towards surgery. 

Before the op my husband started to do the pelvic floor exercises and he started them again after his catheter was removed and this is really helping. He is having monthly appointments with a physiotherapist to help him with this. At the moment he is wearing incontinence pants to contain any leakage, but he has gained a degree of control and gets to the toilet where most of the fluid ends up. In the first couple of weeks following catheter removal he was needing to get up during the night 8 or 9 times, so this was making him tired during the day and he needed to go back to bed in the afternoon. This has now reduced to around 5 or 6 times and he has noticed that the pants are drier in the morning so it is going in the right direction. 

Also for the first couple of weeks he didn't have the confidence to go out of the house because of the risk of leakage causing embarrassment, but he is now able to go out for quite long walks and he's been fine. 

Remember there are side effects no matter which option you take and you have to work out which you can live with if you have them. The fear of incontinence was his worry, so I reminded him of all the years that women have to wear protection and how much embarrassment that causes if leakage occurs. When he was having his biopsy he even said that he now understands how I felt giving birth, clearly having no idea of all the other times during my productive years that I was in an undignified position .

Joking apart you sound like a very fit man and although the gym may be out of bounds for a while I am guessing that this will help you to recover quickly as your body awareness and strong core muscles should be a bonus. Hormone therapy and radiotherapy could affect your ability to keep going to the gym for longer because of the loss of testosterone and the time spent having daily treatment.

Whichever route you go for, I wish you well.

Hi Bootsy11

Well I have just read the post from GR1 above and I would say it's honest, concise and to the point (I was beginning to wonder if the surgeon had written it!!) but it does give the reasons why that particular choice was made.

I didn't have a choice as it was thought the little sods had gone walkabout (they hadn't!!). HT/RT to me has been easy, yes I am still on it, yes there have been side effects and fatigue - but no pain, no invasive treatments, it's just a longer process and indeed if it doesn't work - you can't have surgery later, where as if surgery isn't working there's always radiotherapy as a back up.

To me it's a very personal choice - had I had the choice I would have gone down the HT/RT route. If it helps in your choice you can read my 18 month journey (I am still on it) by clicking on the icon of the beach.

If you have any questions - feel free to ask.

Whatever route you take  -I as GR1 said above wish you well.

Kind Regards

Brian.

Hi Bootsy

My husband had the choice. He was 75 and fit. He made the decision to have RT and HT as he didn't want the side effects of surgery - especially , as he saw it, the indignity of incontinence. The RT was tiring for both of us because I did the driving and that was a 50 mile trip on country roads and through a packed city centre in the winter. He had a feeling of bloating  during the RT but that was remedied by a slight change of diet.

The HT is far more problematic! For me more than him! This time last year he was a youthful, active, fit 75 year old. Now he is a 76 year OLD man. It breaks my heart but it was, at the end of the day, his choice. He is more pragmatic and says he is old anyway! We are due for a review in October and the possible cessation of HT so possibly only one more injection to go! His last PSA was 0.006 so very pleasing and no issues with incontinence which was his biggest worry.

There is no easy solution and I really feel for our menfolk when faced with this decision.

Just a word of warning, sometimes cancer cells are left behind and radiotherapy is then required.

So - just a slightly different perspective to help you along the way

HTH

Hi... Sounds like yr both been through the mill.. I do feel for the partners in all of this... Must be difficult and feeling helpless at times. Thank you soo much for your openness... Its very helpful.... My love goes out to you both. 

Hi Bootsy

Most has already been said but yes surgery can cause side effects, urinary and ED mainly but obviously not everyone has these issues.

Suppose the main bonus for going down the surgery route is that  u can still have RT afterwards if necessary but not the other way round.

Having said that I still went for Radiotherapy.

You don't give any stats to show if confined to the gland, has active surveillance been offered if it is.

Good luck

Steve 

Yeah….positives are it was found early purely from me walking into doctors and asking for a health check and secondly it localised. 

Hi Bootsy11

Each individual will have their own personal reasons for choosing which route to go down, & there is no right or wrong answer. 

The hospital gave me lots of information booklets from Prostate Cancer UK to take away & read & I also did a lot of research on the internet before coming to my own decision.   Although I'm 67, I keep very fit & active so I decided to go down the HT/RT route & am now at the RT treatment planning stage having been on HT for about 8 weeks.

My best advice is to:

1. make sure you do your own research including looking at the threads on here & asking questions

2. prepare a list of questions / concerns to take with you when you see the consultant (I had 3 pages of them in a notebook although most were covered anyway in the conversation)

Kind Regards

Brian

Hi there. Can I ask how long it took from diagnosis to having an appointment with the consultant? 

My father in law had a diagnosis about 4 weeks ago and since then we've had no other calls or information despite us chasing regularly.

Hi Pulpo...  I had the diagnosis in a phone call on the 19th May this year, & a bone scan was then booked for the 1st June.   The appointment with the consultant followed on the 12th June. 

Like many others I have written about my journey to date, which if it helps you can read by clicking on the coffee cup icon next to my profile name.

All the best

Brian

Hello Pulpo a feira

I would suggest you take the following action to see if you can speed your appointment along:

* e-mail (then their is a trail of communication) the consultant/secretary to chase up the appointment.

* Follow it up with a telephone call - be nice but tell them the wait is causing untold anxiety.

* If the above isn't working contact the hospital PALS (Patient Advice and Liaison Service) and tell them about your wait for the meeting.

The above should get you an answer.

Best wishes

Brain.