Prognosis and Treatment

Hi Mamby61

Warm welcome to the club that nobody wants to be part of. 

My husband cancer is too far gone for removal, spread to nodes and bones. So we never had to make a decision whether to remove or not. I am sure many good people here will join the conversation and share their experiences. I watched Dr Mark Scholz video and i disagree with one thing: He claims that PC spread really slow and it take years to break out. Well, my husband PC spread very quick, within less than a year. 

This community here is wonderful and I am sure you will get very good advise mixed with some good British humor.

Another thing regarding ED. My husband get HT for the last 4.5 months and he is now suffer from ED but otherwise live totally normal life.

I wish you the best and life will be much easier after you make your decision.

Take care

Dafna

Hi Mamby

I understand your concern regarding ED and urinary issues which can, (but not always), happen with surgery.

The other thing is that once the cancer has broken through the capsule edge then RT is probably best because if u have surgery then u may have to have RT as well to mop up any stray cells.

Your point about the surgeon being one of the best, he could well be but don't forget he will always be pushing for surgery.

Just my thoughts , see what others say

Regards

Steve 

Hello Mamby61 and a warm welcome from me, as Dafna has said some PCa is more aggressive than others though your Gleason score  3+4 usually indicates a more benign variant, can i ask how many core samples were taken with your biopsy, as i only had 8 and mine too were different to what my scans showed, If as your specialist thinks your cancer has escaped, you will probably need radiotherapy after surgery to mop up any stray cancer cells, Was radiotherapy ever discussed with you, as understandably we all worry about ED and incontinence, and RT offers a better chance of avoiding them, or if you do get them, a much better chance of  recovering from them, I went down the RT+HT route, Incontinence issues for 3 to 4 months and no problem with ED other than lack of libido for 8 weeks, best wishes with whatever treatment you choose,

Eddie

Hi Mamby61

I had surgery 18 months ago now. I was T3a G4+5. Incontinence was relatively bad and very depressining for me for the first 6 months or so but has improved a million times. I still leak a very small amount each day, which I manage by wearing pretty smart looking washable incontinence pants. This can be  worse if I am doing manual work or out for a long day, when I will also wear a pad. I do feel I have it under control and I accept it as a way of life and I do not find it depressing any more. I also suffer from ED. I take medication daily and have a vacuum pump. At 70 years old, I do not like it but  I have come to accept it as being an acceptable trade off for living. It is evident that some have it worse and some have it better than me after the op. I also realise that a vast number of men anyway suffer from both issues for numerous reasons, particularly as they reach older age. I think to myself that I could easily be one of them anyway. I know you are younger than me but the fact is your body and your mind does start to deteriorate in later years anyway but I consider myself very lucky that I am as active as I want to be and my brain can do most things it used to do. I chose surgery because I thought that at least it would get rid of hopefully the biggest chunk of cancer and if it didn't get it all (which it now seems is the case), I could still have RT to get the rest. Sort of belts and braces. Unfortunately you cannot have this benefit the other way around. We all make our decisions for different reasons. Fortunately there is a lot of very good information and help available such as on this forum, in macmillian website and prostatecanceruk website (watch out for the bad information though, of which there is also plenty).

Goday' Mamby61 

Another warm welcome to the forum from me too - again I am so sorry to see you joining us.

Incontinence and ED are the two issues with surgery and it's how good your surgery is and how good the nerve sparing is!! I never got the choice as it looked like my little buggers had gone "walkabout".

I can only agree with Static - do your research from trusted sources (NOT Dr Google) and ask questions on here - there are lots of threads on the forum where Community members like Static have been good enough to share their personal journey. I am a bit of a wimp and if offered surgery would have turned it down and so am 27 months into a 36 month HT/RT journey - I have had issues and you can read my journey by clicking on my avatar.

It's down to personal choice, for me ED wouldn't be an issue but incontinence - well I wouldn't like to take the risk.

Good luck with your journey - feel free to ask any questions, however trivial - you will get honest answers.

Best wishes - Brian.

Hi Static,

Inspiring post and attitude. Thank you for that.

Best wishes

Dafna

Hello Mamby, I’m sorry to hear about your diagnosis and your sharing of  the dilemma all men diagnosed with potentially curable prostate cancer face about which treatment pathway to take.

like yourself, I watched the utube video and found it very powerful and, in some ways, very reassuring as my husband chose the RT and HT route (aged 75 at diagnosis T3a N0 M0 Gleason 4+3). According to the video, 4+3 should be treated but there are indications that 3+4 might not, if I understood correctly? I would definitely want to see the statistics behind this statement before choosing not to treat 3+4!

I think you also need to look for potential bias in the video.Dr Schultz is practising medicine in America where the commercial aspects of dealing with disease are potentially more magnified than in the uk. I don’t know the Australian system, I am afraid!  He is therefore looking to maintain his own income and profit. He is also a medical doctor and not a surgeon ( is he an oncologist?). Any patient deflected to surgery is a lost customer for him.

my own opinion is that the side effects of both curative roots are distinctly unpleasant - ED, incontinence and operation risks for surgery v bowel and urinary problems and fatigue  with RT and osteoporosis, cardiac problems, diabetes, ED, loss of libido, brain fog, fatigue  with ht. The success rates for both pathways are pretty much the same so it seems to boil down to personal choice if both options are available to you .

what I strongly feel is that there should be continuing research into prostate cancer and curative pathways to come up with better options for our sons and grandsons! I also think there should be national screening programmes for men once they reach a set age  - just as cervical or breast screening for women.

there is a lot for you to consider and take on board and, like others, I would urge you to make your decisions based on good quality research and getting as much info as possible!

You also don’t mention a partner. As a wife, I do feel strongly that prostate cancer is a ‘couples illness’. It affects both partners profoundly. I acknowledge that men with prostate cancer should feel free to make their own decision about what happens to their own body. But, whatever course of action that is taken, the partner also suffers the consequences.

I do hope you can reach the decision that feels right for yourself and I also hope that it all goes well and you come out the other side with ‘cured’ stamped on your medical records!

Thank you so much for your response Dafna and advice, it is much appreciated.

Thanks Steve for your thoughts, much appreciated.

Hi Eddie,

From memory there were 12 core samples taken and yes he did mention to me about RT needing to be done. 

Glad to hear no probs with ED and thank you for the best wishes. 

Cheers

Andrew