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Radiotherapy & hormone therapy

User
Posted 19 Aug 2024 at 20:50

I am scheduled for 33 sessions of radiotherapy as my Cancer has returned despite surgery. My concern from reading possible side effects is I already have bouts of IBS! Despite following all pre CT sighting scan recommendations it took 3 attempts to finally be successful. The radiographer were very good but I was in the Dept for 4 hours. Now have an appointment to see the consultant prior to sessions commencing. I hoping my sessions don't become long and stressful. 

User
Posted 21 Aug 2024 at 21:21
Cuthbert, your PSA is rising rapidly and I can understand why the oncologist favours thorough treatment. PSA is a good indicator in men who have had surgery since it should be zero; if there happened to be a few residual non-cancerous prostate cells producing PSA (which can happen) it wouldn't be rising like that.

However I agree with Chris that you should talk to your IBS doctor, and if possible get the two to discuss the problems and solutions. It may be that the best therapy for you wouldn't be the same as for most people.

User
Posted 19 Aug 2024 at 20:50

I am scheduled for 33 sessions of radiotherapy as my Cancer has returned despite surgery. My concern from reading possible side effects is I already have bouts of IBS! Despite following all pre CT sighting scan recommendations it took 3 attempts to finally be successful. The radiographer were very good but I was in the Dept for 4 hours. Now have an appointment to see the consultant prior to sessions commencing. I hoping my sessions don't become long and stressful. 

User
Posted 21 Aug 2024 at 18:39

Lizzo,

I was informed my PSA has risen again but due to being shocked about the proposed treatment I forgot to ask for the figures. I had received a PET scan just prior to seeing the oncologist. The scan did not identify specific areas but the PSA increase indicated micro cancer cells present, which they wish to treat. I shall be asking the oncologist on 09/09/24 for the figures. Hope this explains the situation.

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User
Posted 21 Aug 2024 at 12:19

Hi Cuthbert1 what was your PSA when your team decided you needed radiotherapy? My husband was advised to have RT when his PSA was 0.18 

 

User
Posted 21 Aug 2024 at 16:54

Hi Lizzo,

My PSA levels were virtually un -recordable following surgery until 25/10/23 when it was recorded at 0.09 on 13/12/23 it was 0.1 on 20/02/24 = 0.20. On 27/07/ 24 the oncologist told me it continued to rise. Recommended at this point 33 sessions of radiotherapy and 2 years hormone therapy. Radiotherapy will target prostate bed and lymph nodes in pelvis area to sap micro cancer cells My wife and I were shocked it was 33 sessions. Stupidly we thought radiotherapy may have been one week. Hope this information helps. Best wishes. 

User
Posted 21 Aug 2024 at 18:17

Hi Cuthbert1 so did your scan show up anything or have you not had the results yet ?

Best regards Lizzo 

User
Posted 21 Aug 2024 at 18:39

Lizzo,

I was informed my PSA has risen again but due to being shocked about the proposed treatment I forgot to ask for the figures. I had received a PET scan just prior to seeing the oncologist. The scan did not identify specific areas but the PSA increase indicated micro cancer cells present, which they wish to treat. I shall be asking the oncologist on 09/09/24 for the figures. Hope this explains the situation.

User
Posted 21 Aug 2024 at 19:39

Hi Cuthbert 

So nothing showing up on the scan ?

Just a raised PSA  ?    this isn't proof of cancer progression ?

I think they are over treating men like you , like my husband - actually my husband didn't go ahead with their recommendat ion of Zoladex  and radiotherapy there was quite a heated discussion between the Urologist and me bc he said my husband had only 2 years to live if he didn't have radiotherapy and Zoladex  but I didn't believe  him bc my poor old Dad had multiple mets and bone ache at diagnosis yet lived another 6 years - this urologist  was trying to scare my husband  into treatment 

Of course you must do what you want and I wish you well 

 

 

User
Posted 21 Aug 2024 at 19:40

Unfortunately with a T3b staging (like me) you are at greater risk of recurrence. 33 fractions of EBRT tends to be the norm. The toing and froing to and from the hospital tends to be a bit of a drag but most people report a good experience during treatment. I was lucky in that I only had six months of RT but others, like you, are on it for two years. I'm not sure I understand the rationale behind six months/two years. The treatment is likely to cause bladder and bowel irritation which gradually goes away. You might be given Solifenacin for the bladder irritation and told to take Imodium if loose bowels are a problem. If you are seeing another doctor for your IBS it might be worth speaking to them.

User
Posted 21 Aug 2024 at 21:21
Cuthbert, your PSA is rising rapidly and I can understand why the oncologist favours thorough treatment. PSA is a good indicator in men who have had surgery since it should be zero; if there happened to be a few residual non-cancerous prostate cells producing PSA (which can happen) it wouldn't be rising like that.

However I agree with Chris that you should talk to your IBS doctor, and if possible get the two to discuss the problems and solutions. It may be that the best therapy for you wouldn't be the same as for most people.

User
Posted 22 Aug 2024 at 10:29

I agree with J-B, with a short doubling time, you need to be treated.

The 30+ sessions is kinder to the surrounding organs than the shorter regimes of higher-powered treatments. While prostates handle the smaller number of higher power accurately aimed doses well, not all other organs do, and salvage radiotherapy after prostatectomy is by definition not targeting the prostate.

There is a product which uses a rectal probe during radiotherapy to live monitor rectal dose (I can't recall the commercial name), and might be of particular value in an IBS case. A Scottish hospital offers this, and maybe some others too, although it's not common. Another option might be an MR-LINAC to very closley monitor the rectal position during treatment, which a few specialist centres have now. Any of these could require that you are treated a long way from home, because their availability is limited. The more accurate targeting these techniques provide could also mean fewer higher powered radiotherapy sessions would be safe.

User
Posted 22 Aug 2024 at 11:29

Originally Posted by: Online Community Member

Hi Cuthbert 

So nothing showing up on the scan ?

Just a raised PSA  ?    this isn't proof of cancer progression ?

I think they are over treating men like you , like my husband - actually my husband didn't go ahead with their recommendat ion of Zoladex  and radiotherapy there was quite a heated discussion between the Urologist and me bc he said my husband had only 2 years to live if he didn't have radiotherapy and Zoladex  but I didn't believe  him bc my poor old Dad had multiple mets and bone ache at diagnosis yet lived another 6 years - this urologist  was trying to scare my husband  into treatment 

Of course you must do what you want and I wish you well 

 

 

 

why would a urologist want to scare anyone, people are scared enough I’d have thought. 

how long ago did your husband decline the advised treatment, and is he still regularly monitored? 

were you not worried that going against MDT advice and experience that your husband might suffer a progression that could have been avoided? 

User
Posted 22 Aug 2024 at 12:57
Quote:

 

 

why would a urologist want to scare anyone, people are scared enough I’d have thought. 

how long ago did your husband decline the advised treatment, and is he still regularly monitored? 

were you not worried that going against MDT advice and experience that your husband might suffer a progression that could have been avoided? 

 

 

Why would a urologist want to scare my husband into having Zoladex and RT ? Idk ?  You tell me ?

Yes of course I was worried about him but I  Know a bit   about  hormones and I was confident a potent phytoestrogen such as Aguaje would work better than Zoladex and that he wouldnt have the awful side effects of Zoladex 

It was  2 years ago in October

 

 the urologist said he wouldnt give him any more scans if he didnt have RT and Zoladex  however my husband has just had a psma pet scan and nothing has shown up he will be due his 6 monthly psa test soon

 

 

Edited by member 22 Aug 2024 at 12:58  | Reason: Add more info

 
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