Surgery update

Hello Nigel (Rod the Mod) 

I am so sorry to read that all is not well - a problem shared etc - let's hope now the catheter is out and you are doing your pelvic floor exercises things will improve.

Rod the Mod said:

"There is a fairly high chance that the cancer does come back over the next 10 years " 

I would have thought it's a bit early for comments like that as it's usual to have the Prostate examined and the histology will give a good idea if the surgery has been successful or not. After surgery if there is any issues you are still good to go down the HT/RT route although I know it's not what you want.

For that little bit of extra support we have free counselling provided by BUPA and here's the link - Free BUPA counselling.

Don't forget there's also our support line on 0808 808 00 00  (8am to 8pm 7 days a week. They can provide you with some extra support.

If I can do anything for you please don't hesitate to contact me.

Best wishes - Brian.

Many thanks Brian greatly appreciated 

Hi Nigel (Rod the Mod ), I haven’t had a RP as my cancer had already spread, but it seems odd for a comment like “There is a fairly high chance that the cancer does come back over the next 10 years " and not particularly helpful.  I am not medically trained but I think anyone who has had cancer is probably more likely to get it again. The difference being that you will be monitored and you have very good additional treatments if it becomes necessary.  Just concentrate on improving and hopefully you can get to a point where all of this recedes into a distant memory.  Best wishes, David

Hello Rod the Nod, sorry to hear of your difficulties. All operations are tiring and take time to recover from. Any nasty infection is tiring and recovery can be lengthy. You've had both!!!! Someody once told me that being a patient involves having patience! Hopefully as we edge oh so slowly towards the Spring you will begin to feel stronger.

Re cancer coming back in 10 years! What on earth induced your consultant to say this?  I would suggest you ask for clarification and sight of the pathology report to understand whether or not they had 'clear margings ' of healthy tissue around the removed prostate. If the cancer comes back, then that is the time you can tackle it!

On that same issue - 1 in 2 of us are now destined to received a cancer diagnosis at some time in our lives. There must be many people walking about quite happily - totally ignorant of the fact that some cells, somewhere in their body has decided to 'go rogue'.  I would hazard a guess that for most people, the only certainty is uncertainty Only those with a genetic predisposition might have just a tad more cerrtainty but, even then, its not a given. Also who knows what magical medical developments for treating cancer might be around in 10 years time?!!! Try not to ruin your life by dwelling too much on this very vague possibility. Your surgery has pushed the chances of early death from prostate cancer into the long grass - I would urge you to make the most of this extra time and enjoy life  

Glad your wife is able to support you, but, as a wife, can I ask you to remember that she will have been through a torrid time too and will have her own needs for support? I send you both my best wishes for a speeding recovery and hope you are making some plans for a lovely holiday in the sun!!

Bless you David  

I find a lot of the comments and advice on this forum very reassuring and helpful, thank you

Hi Nigel

really sorry to hear you have been struggling since the RP! I’m sure things will improve as time goes on! 

Just to give you someone else’s experience of how different consultants think/write/explain. 

my husband 58 was diagnosed Gleason 9 last April his MRI suggested at this time T2b 

His intial consultant that did the biopsy wrote to GP stating exacting this “this very high risk patient” “may require multi modal treatment of cancer is advanced” this all before any bone scan and any Histology from his Radical prostectomy! I was shocked and so anxious. 

As it turned out we ended up with a different surgeon and his histology was T2c Gleason 9 and this is how his letter went to GP 

Despite Gleason 9 Mr xxx has an excellent 15 year mortality stats of 95% survival despite there being a risk of needing some salvage treatment in the future. 

Some consultants put the fear of god in patients without adequate explanation of what the actual risk is. I would say until you know your histology it’s to early to say what your risks are and tet not to let the letter cloud the fact that you must of been a candidate for surgery which is a positive. 

what Gleason score were you given and any idea of what your staging was from MRI? 

Best Wishes 

A

Hi, we have been married for over 40 years and are there for each other.

l am very aware of making sure my wife Andrea is coping with it all, as she is just as important in all of this as me.

Andrea works at the Hospital where l had my operation. She has had a wonderful network of support from her colleagues including Doctors and Nurses. To be honest better support than l have had from the Hospital !!

My 2 boys keep an eye on her as well.

It`s a very valid and important point that you make and l thank you for making it also making others aware if they read this post.

Hi Rod the Nod - its great that your wife is receiving support. I had wonderful support from family and my colleagues ina small charity I am involved with. I had zero support from the medical services- including hospital and GP. I have always said that prostate cancer is very much a 'couples illness' and this should be recognised by the medical teams we interact with. I asked one doctor what consideration he gives to wives and he said 'none' - everything is the man's issue not the woman's!!!

I hope you have felt encouraged by the replies you have received here? This is where I turned to for support when I needed it! The thing I have learned from our experiences is that theere is life with a cancer diagnosis and that life can be enjoyed and the cancer can be managed in the recesses of our brain where we should push it and not let it come to the front and interfere with that enjoyment!

Interesting to read the replies and encouragement

I am grateful for all the support