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Surgery or Radiotherapy Advise

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User
Posted 08 Apr 2022 at 09:11

Morning All,

Looking for some advice/help/information. i have been on HT since beginning of January and PSA has came down from 88 to 2.6 which is encouraging.

I had been given 2 options as previously mentioned 1. Radiotherapy with HT for up to 3 years or 2. Surgery and possibly RT after ( My 1st scans confirmed  T3 (N1, M0) (Gleason score 4+5= 9 ) which they said 1 lymph node had cancer.

I had a more detailed PET/CT scan at the Beatson Centre Glasgow so that the surgery route can be discussed and my urologist called with an update to say that diagnosis is still the same but several lymph nodes have cancer and the surgeon 1st thought was surgery may not be an option but they were away to have a meeting with the Surgeon/Radiotherapy team to discuss the possibility.

My 1st thoughts was if i had surgery and it was not successful i would have the Radiotherapy to fall back on but now if the surgery is going to be much more complicated with potentially more short/long term side effects i am not sure ??

The urologist back at the beginning said Surgery or Radiotherapy would have the same outcome ??

If i went down the Radiotherapy HT route and this didn't work what is my other options ??

Anyone who has had this sort of diagnosis or no of this scenario your advise would be much appreciated.

Cheers

Grigor

User
Posted 08 Apr 2022 at 11:09

Hi Grigor,

My husband had similar diagnosis T3a N1 and they thought 1 possibly 2 nodes involved. He went down the surgery route knowing that RT would be likely. (I think he was of the same mind that he would have RT to fall back on) They took 14 lymph nodes so we were told he shouldn’t really have any problems with lymphoedema, I guess it would be useful to know what they would have to dissect in your operation to know how bad the side effects could be. He’s been really lucky and not had many other issues after surgery except for the ED which with no libido it’s not been a problem so far 🤦🏻‍♀️. 

Post op results: tumour was downsized to T2 (not sure if this was because HT had shrunk it?) Gleason score increased from 7 to 9. All 14 nodes were analysed and one was found to have cancer. Undetectable PSA but he has stopped HT now so will have a clearer picture over the next few months. All the post op information was very encouraging and surgeon was really happy how it went. Can’t take anything for granted of course so just one PSA test at a time now.

This is just our experience, I know everyone is different and can have worse side effects from surgery, but lots of people we know have also done well. I’m sure others will come on with their RT experience for you aswell.

Best of luck with your decision 

User
Posted 08 Apr 2022 at 22:06

I don't think there is anything you can do to minimise the risk post-op - if it is going to happen, it is usually 6 - 12 months later. Although not common, lymphodema is also possible post-RT if lymph nodes are included in the zapping zone.

Just keep an eye on his ankles and groin in the next few months and ask GP for a referral to odema nurse if concerned. Sometimes, specialist massage can stop it getting worse if done soon after symptoms appear.  

Edited by member 08 Apr 2022 at 22:10  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 08 Apr 2022 at 11:09

Hi Grigor,

My husband had similar diagnosis T3a N1 and they thought 1 possibly 2 nodes involved. He went down the surgery route knowing that RT would be likely. (I think he was of the same mind that he would have RT to fall back on) They took 14 lymph nodes so we were told he shouldn’t really have any problems with lymphoedema, I guess it would be useful to know what they would have to dissect in your operation to know how bad the side effects could be. He’s been really lucky and not had many other issues after surgery except for the ED which with no libido it’s not been a problem so far 🤦🏻‍♀️. 

Post op results: tumour was downsized to T2 (not sure if this was because HT had shrunk it?) Gleason score increased from 7 to 9. All 14 nodes were analysed and one was found to have cancer. Undetectable PSA but he has stopped HT now so will have a clearer picture over the next few months. All the post op information was very encouraging and surgeon was really happy how it went. Can’t take anything for granted of course so just one PSA test at a time now.

This is just our experience, I know everyone is different and can have worse side effects from surgery, but lots of people we know have also done well. I’m sure others will come on with their RT experience for you aswell.

Best of luck with your decision 

User
Posted 08 Apr 2022 at 15:04
With that diagnosis surgery is unlikely to remove all the cancer, so RT is highly likely afterwards. Why have the side-effects of both treatments when you can just have one? I was advised to have RT rather than surgery for that reason, and I'm glad that I did.

Best wishes,

Chris

User
Posted 08 Apr 2022 at 16:38
There is a risk of lymphoedema even if only one or 2 lymph nodes are taken for sampling during RP - taking out a number of nodes increases the risk significantly and lymphoedema can have a major impact on quality of life.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Apr 2022 at 17:38

Originally Posted by: Online Community Member
There is a risk of lymphoedema even if only one or 2 lymph nodes are taken for sampling during RP - taking out a number of nodes increases the risk significantly and lymphoedema can have a major impact on quality of life.

Ah I didn’t realise this. Our surgeon said there wouldn’t be significant risk with only taking 14. I will speak to them again as I wanted to know what (if anything) we can do to minimise this risk. 

User
Posted 08 Apr 2022 at 22:06

I don't think there is anything you can do to minimise the risk post-op - if it is going to happen, it is usually 6 - 12 months later. Although not common, lymphodema is also possible post-RT if lymph nodes are included in the zapping zone.

Just keep an eye on his ankles and groin in the next few months and ask GP for a referral to odema nurse if concerned. Sometimes, specialist massage can stop it getting worse if done soon after symptoms appear.  

Edited by member 08 Apr 2022 at 22:10  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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