Need to choose treatment option: Robotic surgery or Radiotherapy

Hi HarrySwimmer welcome to the forum. I dont know enough about your query, but by my answering your post it will bump it onto the Prostate Cancer thread and someone will be along soon to see if they are able to help you at all.  

Hello Harryswimmer 

Another warm welcome to the online community from me - I am so sorry for the late reply but I live in the North and have been to London for the day!!

So I have only had Radiotherapy and still have the bulk of my prostate intact (You can read my journey by clicking on my avatar). The Radiotherapy was easy - just like sitting on a sunbed for 20 days for 10 minuets. The side effects were for me, fatigue and an increase in Number 1's and 2's but this only lasted a few days. I am now 20 months on from Radiotherapy and have no issues whatsoever.

Surgery is a major operation and whilst you are a fit 69 year old I think I would be tempted to stay away from it - but that's only a personal opinion from someone not offered surgery.

I hope this helps - if you have any further questions, however trivial ask away.

Best wishes - Brian.

Good morning Harryswimmer and welcome.

My husband had radical radiotherapy to the pelvic area 4 years ago (33sessions) which did cause some short term incontinence which was resolved by drugs and now only experiences it when stressed. Apart from that he has had very little trouble in the bowel or bladder front and the radiotherapy is still showing good results in that area. Fatigue did build up during the sessions but this is more of an issue due to the HT which he is still on. The main thing you can do is to keep as fit as possible as this really does help. What you can also do is help improve things internally with pelvic floor exercises - you can download the Squeezy app which will explain how to do them properly and remind you when to do them. Side effects from radiotherapy were more common in previous years as there was less accurate targeting and margins compared to current day machines but it is good to check out which type your health authority has.

https://squeezyapp.com/

From what I have read then surgery appears to carry more of a risk for long term incontinence and ED and your medical team have given you their assessment of your specific risk.

There is a good book that I point people towards when they are first diagnosed which might help. You can download it for free.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

I have tagged Tazzo in who has had an artificial sphincter fitted I think and I remember that Huffies is looking seriously at this option so maybe they can help a little more about incontinence.

Hopefully others will come along with their experiences but all the best with making up your mind with this difficult choice.

Thanks very much, Millibob, for your very helpful comments.  I have read your journey and I wish you well.   With prostate cancer, as for other cancers as well I suppose, quality of life is a very important factor.  For me, exercise and swimming is a key part of my daily life and is very helpful for my mental health.  I use the gym briefly before going to the pool at the local leisure centre (I live in London). Overy time, I have got to know fellow swimmers, of all ages, with some chit-chat at the end of the pool or in the communal changing rooms: this is a social element which is also great! I am digressing from the topic, but wish to encourage other forum members to get out there, whatever stage of treatment they are on.

Best wishes, Harry

Thanks very much, Alwayshope and I am so glad that your husband is doing so well. I have read that some side effects of radiotherapy occur some years after treatment and it is great that your husband is doing so well after 4 years.

Thanks also for the links to the Squeezy app and to Dr Jyoti Shah's book. 

I am speaking to my surgeon on Friday. At present, due to the potential risks of incontinence post-robotic surgery, I am more inclined to choose radiotherapy. I shall update the situation in this forum. 

kind regards,

Harry

Hi Harryswimmer, reading your post was a case of deja vue. I was 70 when diagnosed very similar to you (full details are on my avatar). I am also a keen gym member (5 times a week) and keen allotmenteer. I had the same choices as yourself - HT/RT or surgery - and chose the surgical route. I didn't fancy the side effects of the former and the surgery did offer secondary RT should the op fail, which the reverse is not the case. But how I wish I had your consultant!!! Yes, mine did tell me that some men suffer long term incontinence but left me with the impression that by 12 months it would be rare for it to still be a serious issue. OK, he was trying to be optimistic. Another consultant I saw recently was spitting blood when I recounted this; he even said that he has "confronted" such approaches within his own sphere of influence. It is much better to get the blunt facts.

So, the operation was a success and the cancer has gone. But I am still totally incontinent after 10 months and my life is determined by a 2-hour cycle of having to change pads. Early on I had specialist physiotherapy for pelvic floor exercises and was told that I had a strong pelvic floor; but no improvement otherwise. The physio reported back to the consultant that she could do no more for me. Drugs do not work for stress incontinence so another approach was required. I have a Pacey Cuff which I use when going out for an evening. I don't know how good it would be for gym work or swimming. Sometimes it can be a bit uncomfortable, especially when bending from the hips such as getting out of a chair or bending over. A word of warning here; there are 3 sizes of Cuff and their literature says that if you are on the border between 2 sizes then go for the bigger when. My advice is go for the smaller one as if it is too big then you have to buy a complete new device since the straps are not interchangeable. Check if there is a short returns period.

I still go to the gym and the allotment but am constrained in what I feel confident in doing. For instance, I love spin classes but avoid repeated stand/sit instructions as I can feel the immediate impact on my bladder; squats are another problem area.

My surgeon told me that nothing could be done until 12 months. However, the guidance from such places as Prostate Cancer UK is not as draconian as this and states 6 - 12 months. After a lot of pressure from my wife and I he did eventually agree to refer me to a specialist in artificial sphincters but I have had to wait 5 months to get the initial consultation; due in 2 weeks time. So, I bit the bullet and went private because the incontinence was having such an impact on my mental health. I have had 2 consultations, tests for urodynamics and flexible cystoscopy, the go ahead from the MDT and the operation is scheduled for 11 September i.e.1 week after I would be starting the NHS process.

I will be having a Rigicon Sphincter. I have been told that there is no guarantee of a permanent solution and that there is a progressive 3% chance of failure in any year. This is a risk I am willing to take for a better future.

I don't know if this helps but feel free to ask any more questions. In the meantime I wish you all the best for your chosen route.

Hello Huffies 

Thank you for such an honest, down to earth factual post.

I am so sorry it's not worked out for you but I thank you for hanging around the Community to help others. Your post is very much appreciated.

Best wishes - Brian.

Hello Harryswimmer,  and welcome I was in healthcare 15 years and have a little experience of the aids you mentioned, but nothing I ever tried personally but never had any issues with the power sleeve

I too had radiotherapy and because i also had cancer mets to my rectum, Bowel and bladder neck and a few lymph nodes my whole pelvic area encompassing the mets was targeted with 73 gy of radiotherapy. Harry, I also had a TURP 8 weeks  prior to RT treatment. The RT worked better than hoped bladder,  bowel and rectum are NED and nodes reduced by>70%.

Never had ED, lost my libido for a couple of months, though a little leakage at the wrong time put a stop to intercourse for about 6 months, my bladder look a year to heal fully but was never painful and functioned pretty well, I only wear a pad some of the time mostly for peace of mind.

Bowel, never had many problems due to  RT, I  did pass a little blood caused by anal fissures but I also have "long term", haemorrhoids which bleed regularly so couldn't say which was the  main reason for the blood.

Today bowels are normal, bladder/urinary issues vary minor at worst and everything good in the bedroom. My best wishes.

Eddie 

Something I forgot to mention earlier.  I have also been warned that 1 light pad a day may be needed even after the AUS operation.

Hi Huffies, with an AUS, the catheter part is 1 size smaller, "to reduce risk of injury", than you would have with an indwelling catheter, hence a slight risk of urinary bypassing and the need for a pad.

Eddie