Surgery vs radiotherapy

HiStewart1234 .

Welcome to the group and I hope that we can help. My husband has recently had SBRT which is delivered on a LINAC machine, albeit to a different part of the body. These machines are being installed at various hospitals in the UK and offer a very guided source of external beam radiotherapy a lot more precisely than traditional forms of EBRT thus with less collateral damage. I have attached a link to where you can currently get it.

https://prostatematters.co.uk/treatments-for-in-capsule-diagnoses-t1-t2/where-to-access-mrlinac/

Having a T2c diagnosis you are classified as higher risk and there are currently trials ongoing to evaluate the best treatment strategy for men in your position. The original work targeted the prostate capsule only but the current PACE NODES trial is looking at whether there is a better outcome if the lymph nodes are also targeted for those in the higher risk group such as yourself. This trial is being carried out at a number of NHS hospitals.

https://prostatecanceruk.org/research/research-we-fund/ma-ct20-005

We have a number of people on this forum who have been through or are going through this treatment and as a starter I have attached this link.

 RE: PACE NODES Clinical Trial 

Please come back with any questions no matter what and someone who has been there, done that, and worn the T-shirt will get back to you. One thing we have all learnt is that having a cancer diagnosis is very much a family thing so if you or your wife need help through this process then it is available.

Hi Stewart,

have a read of my bio Alpine Wanderer 

First of all, I apologise if this post is too explicit, but I need to get the point across.   I don’t suffer ED and, even though I have no libido whilst I continue on hormone therapy, this will be temporary and my wife and I still have a continuous and fulfilling sexual relationship.  You mention that your wife is 35, so , if you go down the RT /HT route, you just need to explain to her that she will need to initiate sex.  I recommend that you are put on tadalafil for the duration of HT.  Then, when she feels the need, you should be able to satisfy that need whilst having a lot of enjoyment yourself!  Oh, and sex is great for penile health as it engorges the organ and this blood flow prevents an atrophy long term.    AW

Hi Higher 1

My OH is 60 and he was also T2c. He had robotic surgery last week. He’s doing really well. I’ve written his journey so far on my profile. Good luck with making a decision.

Hi again. Sorry I just realised that you already made your decision. I hope it’s going well.

Morning Higher1 good luck with the treatment and hope everything goes well,Ive started the same route and am currently on HT for 3 months then onto RA,keep us updated on how things are going,take care Robert 

Hi Stewart1234

Your question is quite a tricky one and can branch off in so many different directions.  I could produce a book!

IMO there is more to a marriage than just sex.  There is also the question of love and longevity.  It is surely important to be around for your wife and family well.into old age.  You have not said how old you are, which is relevant to the advice you will be given. 

I too am T2c.  It is a bit of a grey classification and something you will have to research into.  It can also be quite individualised within that classification depending on your specific variables.  Some papers regard it as intermediate risk, others higher risk.

The most important thing at this stage is a great deal of personal research.  My research finally crystallised into surgery vs some form of RT.  I eventually disregarded focal therapy like HIFU etc.  I do not regard them as efficacious.  I eventually concluded that in a statistical success context, what Aloine Wanderer opted for would have been the best treatment option for most, but it wasn't available to me.  A close second was MR Linac 5 fraction RT /no HT, but it too wasn't available.  My 3rd choice of ultrahypofractionated 7 fraction RT/no HT was available, and I currently have no regrets with this treatment

Once you have concluded your research and chosen your treatment mode, you must try and get the best delivery/person for the treatment.  If you opt for surgery, not all surgeons are equal, including the robotic ones.

Unfortunately, you will find it very difficult to unravel the old chestnut of surgery vs RT, and there are advocates of both throughout the Internet.  I feel there are also vested interests in different treatments, particularly in focal therapy and surgery.  

The surgeon has to be really good and not leave any tiny fragments of PCa tissue behind.  I think this is a very difficult and specialised task.  Should you have recurrence following surgery there is still the possibility of salvage RT, which is not available following RT.  The next stage after the latter would be HT which can be accompanied by ED.

The following is an anecdote re the above.  Someone I know opted for surgery, both he and his wife bravely opted for non nerve sparing surgery in order to maximise his longevity.  This method means that ED is an immediate given.  Sex is possible but involves pumps etc.   Unfortunately, he had a recurrence and had to receive RT to the prostate bed.  Fortunately, he has remained cancer free over the last 10 years.  However, even in this extreme example sex is still possible, and as AW confirmed is also possible with HT, by the use of medication.

Something else to note is that ED may not be a problem with RT in the first instance but can occur years down the road, along with other side effects.

I will declare that I have a bias towards RT, and it is very much dependent on my individual variables and circumstances.  Everyone is different, you have to do your research and be confident in your choce.  Even then, and for all of us, the stars have to be aligned.

Good luck with your decision.

Dedalus

Hi Stewart 

The latest Radiotherapy is really very good and targeted.

I had a mix of IMRT and IGRT together, that was in 2017.

So 7 years later I don't have any ED issues, only thing is , it's a dry orgasm, no semen or very little but most would probably agree a small price to pay.

With surgery there  can be more of an issue with ED but not everyone has this .

However if ED is a major concern then perhaps be a bit wary of the op.

All the best

Steve 

Hello Dedalus 

Just a thank you for both an informative and honest post.

Dedalus said:

IMO there is more to a marriage than just sex. 

As you know I am travelling the HT/RT journey and am 29 months into it.  Married for 45 years this Sunday - I can't get a "twinge" never mind an erection but, hell this bloody cancer has brought us together - and we were close before my diagnosis!!

You are 100% right in your statement. It's harsh but sometimes the truth hurts - well said that man. It's a journey for us both but we are together and we are winning!!

Best wishes - Brian.

Brilliant, honest and truthful reply Millibob 

I, too, was impressed with Dedalus post.

AW

Hi Dedalus

First of all thanks for your advice it’s very informative but one of the disadvantages of so much information is that it can be confusing as to what treatment to go for. 

I listen to the Mark Schulz popcast ‘ six is not a bad score’ (my Gleason score is 3+3) I made up my mind to go for surgery and am awaiting a time scale. 

Now I am confused as on the podcast Mark Schulz is saying that a  Gleason score of 6 and is not to much to worry about 6 won’t spread and he advocates A/S as the best option with annual mri scan, 
 
I know the treatment decision is down to me but I would appreciate your opinion on this