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Follow up appointment after Radiotherapy

User
Posted 11 Aug 2026 at 22:43

Husband had his follow up after RT with the oncologist that deals in the RT. We have now seen him 3 times . I find him very straightforward with a positive approach.

It has only been 2 weeks and 1 day since the RT finished. 

We had the big hoo hah about husband being forgotten (someone was on holiday and he slipped through the net aparently) and Apalutamide only being prescribed 2 months before the RT.

Good news is his PSA is now >0.01 undetectable.

The oncologist did flag up the RT may not "cure" the cancer as it is in one lymph node but they have zapped that too and he explained the only way to find out is to come off the HT and see in 2 years time. He suggested we forget the other team and just see him. I'm inclined to favour this as we see a different one on the other team and they aren't very empathetic to put it mildly. 

I think the only way to be is positive and hope for the best. 

I recently downloaded the Prostate Cancer Foundation pillars for wellness. It is from the USA but really a sensible read.

It's Nutrition, Exercise and Mental wellness including sexual health. There are some excellent suggestions for diet included 

User
Posted 12 Aug 2026 at 10:50

Excellent thanks very much, found it and downloaded

Heat during the day not too bad at work as we have a very enthusiastic air conditioning system. Not looking for sympathy or anything (I don't get much when I get home and complain)😁, but I'm sat here in a t-shirt, shirt and fleece jacket❄️😃

 

 

User
Posted 12 Aug 2026 at 16:45

Unacceptable Antoinette. I really do hope things improve on that front and of course, that your husband has the best outcome. 

Peter

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User
Posted 12 Aug 2026 at 08:20

Hi Antoinette,

Great news on your husbands PSA. It does sound once again the the NHS hasn't been up to standard with him slipping through the net, but sounds like you've got a good contact now in the oncologist you saw.

 

Thanks for the suggestion about pillars of wellness download, I'll check it out. Anything to do something positive against side effects and future health is good!

 

All the best

John

 

User
Posted 12 Aug 2026 at 09:18
Hi John

If you go to

https://www.pcf.org/ and the Support tab you can download the Science for Living Well beyond cancer.

The sleep section is interesting

Hope you're doing well especially in all this heat. Predictions of 37° tomorrow.

Cooling down a bit at the weekend

Best wishes

User
Posted 12 Aug 2026 at 10:50

Excellent thanks very much, found it and downloaded

Heat during the day not too bad at work as we have a very enthusiastic air conditioning system. Not looking for sympathy or anything (I don't get much when I get home and complain)😁, but I'm sat here in a t-shirt, shirt and fleece jacket❄️😃

 

 

User
Posted 12 Aug 2026 at 10:56

Antoinette, my oncologist over sees both  my radiotherapy and medication. I do occasionally see his registrar. 

Thanks Chris 

User
Posted 12 Aug 2026 at 11:49
Hi Chris

Tbh we have seen 3 different oncologists on the medication? side. May as well not seen anyone. Just reiterate "you'll be on this for 2 years you know" The worst was the first woman we saw." It will take you down to castration level" I practically hyperventilated.

No How are you keeping? No personal interest at all.

I expect I expect too much!

However the oncologist we saw yesterday shakes both our hands first, explains the reason for the appointment and has a clear manner. You also feel he's talking to you as a person, and we're both included .

User
Posted 12 Aug 2026 at 12:58

Antoinette, you are most definitely not expecting too much. I first saw my onco at a post diagnosis clinic also attended by the lead surgeon of the hospital trust  when they both explained how they would treat me in great detail. I chose surgery and had RALP in late 2021. By 2024 my PSA had risen to 0.2 and I was referred back to the same onco as I saw at the clinic because she had seen me, although not treated me, previously. She explained the options for SRT and subsequent HT together with the rationale for each and respected my decision. During treatment and after completion she has called me every three months to discuss blood test results and ask me how I am in a more general sense. I couldn't ask for better and am disappointed to learn of your experience that seems to me to be more akin to mine at my most recent GP surgery (moved home last year) where you may see a different GP, often a locum who knows nothing about you, on every visit. 

Peter

 

User
Posted 12 Aug 2026 at 16:09

Peter

That sounds a really personal service. I have been very disappointed with some aspects of my husband's care.

Following a PET scan he heard nothing till he rang and got through to a nurse who read the results off a screen. She said he'd got a lymph node involved and would be on HT and RT. That's the only conversation he ever had about treatment.

His appointment a few days later was when we were told the "castration level" scenario. I must admit that word does sound pretty awful and I was fairly traumatised by the bluntness of the  consultant. Afterwards ee were ushered into a room with his CSN. An appalling lady who laughed when I tried to explain we had a very active lovelife which was part of core personalities. I felt she treated us disrespectfully. Nothing was ever mentioned re support etc at all.

She certainly didn't follow the guidelines for professionals as laid out by ProstateCancer UK. 

Fortunately I'm made of stronger stuff and found a great deal of help and support on the Internet.  

No options for treatment were ever discussed. 

We have seen I think 3 different consultants. We never knew who we were seeing beforehand or why. 

I cannot imagine being rung up to ask how you are doing. After our enquiry to PALS was escalated to complaints in 24hrs we did get a call from the consultant we'd last to seen to apologise. She didn't actually apologise but rather justified why an appointment had been missed out. Someone had been on holiday. 

Anyway onwards and upwards. We are in the best place we can be in the circumstances. That's what matters most. I just want the best outcome for him. 

User
Posted 12 Aug 2026 at 16:45

Unacceptable Antoinette. I really do hope things improve on that front and of course, that your husband has the best outcome. 

Peter

 
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