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Decisions - side effects etc

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User
Posted 24 Feb 2025 at 08:45

Hi everyone, 


I was diagnosed with advanced prostate cancer 3/4 months ago I have had two injections and have been taking apalutamide tablets for about 7 weeks 


I am a bit confused at the moment as one consultant I so said that they thought I would still be allowed to have radiology alongside the tablets. As the particles in bones and lymph nodes are only tiny. 


however I went for a further appointment last week at which the new consultant was saying that she did not think it was worthwhile as there are too many tiny particles. And radiology would not treat those particles anyway! 

but it was my choice, has anyone else had radiology alongside tablets? 


what are side effects of radiology?


am I just as good sticking to original plan of tablets and then chemo at a later stage?


it is all so scary and confusing and the consultants don’t help they just leave you with lots of confusing info and difficult decisions to make! 


the tablets are currently working really well 


any experience and answers would be really welcome 🤗 

User
Posted 25 Feb 2025 at 07:12

Hi Steve,


Sorry you find yourself in this position…why not phone the Specialist  nurses on here, they are wonderful and will take time to listen to your concerns. Obviously you want the best possible treatment available for your diagnosis so be proactive in finding out WHAT this is.


as far as Radiotherapy is concerned, I had little side effects from this treatment and they passed within a couple of weeks of finishing the treatment…..I found it a breeze, especially compare to ADT. I do know however that you can suffer some side effects long time after but so far I’ve been fine.


So, please follow this up, if you’re confused do everything you can to find out WHY?


Good Luck,


Derek

User
Posted 25 Feb 2025 at 11:13

Originally Posted by: Online Community Member


Hi Andy 


I have not been given any details about the size/number/extent of nets they have never discussed that type of detail!


Can I ask for that information?



Yes, you are entitled to all the information about your diagnosis.


Ask to talk with the oncologist to get full diagnosis detail, and to ask their opinion on the benefit of radiotherapy. You can also ask for your hospital records, but these may not be helpful without the conversation with the oncologist.


Zapping the prostate in the case of metastatic disease is in effect wiping out the mothership (of the cancer). Tiny mets seem to be somewhat reliant on the mothership, and loss of the mothership combined with hormone therapy (and possibly chemotherapy) does seem to significantly set them back and even wipe them out. However, more substantial mets are going to be self-sufficient and in that case wiping out the cancer in the prostate seems to not be particularly beneficial as you have several motherships.


In the case of just a very small number of mets in the pelvis, they will sometimes offer to zap those with the prostate, and that's potentially curative (although not with a very high chance of a cure), but can still set the cancer back a long way. In complicated cases like this, it may be beneficial to be at one of the main cancer centres rather than the local district general hospital.

Edited by member 25 Feb 2025 at 11:14  | Reason: Not specified

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User
Posted 24 Feb 2025 at 09:02

I'm guessing here, but it could be that the consultant is waiting to see how your disease reacts to the hormone therapy (i.e. the apalutamide) before adding additional treatments. 


If your PSA is falling with just the apalutamide then it's working, and in general oncologists like to get the most out of each treatment before starting the next treatment:  they don't like firing all of the available ammunition at once.


If you're really worried about it, ask your oncology team about what your treatment pathway will be in an email.  I've always found my team to be very responsive and helpful.


For what it's worth, I was diagnosed as Stage IV and inoperable with multiple metastases in bones and soft tissue in January 2019.  I was on hormone therapy alone until June 2019, when I started 6 cycles of chemo.  Then in the Autumn of 2019, I had radiotherapy targeting my prostate (the radio had minimal side-effects for me, I just felt a bit tired towards the end of the treatment.  I believe I had 18 radiotherapy sessions).

User
Posted 24 Feb 2025 at 09:09

Thanks Craig, 


first and foremost glad you are well and great to see that it’s working for you, best wishes mate


the confusing thing is the two consultants seem to contradict each other!


personally I have found it almost impossible to speak to anyone between appointments it’s always an answer phone and never get a return call 


thanks for your response


steve

User
Posted 25 Feb 2025 at 00:07

Radiotherapy to the prostate for advanced prostate cancer is relatively new standard of care (~4 years or so). The STAMPEDE trial gave it a go, and found that for men with low metastatic tumour burden (not many mets), it extended the time it took for the cancer to become hormone resistant, which is beneficial. In the case of more extensive tumour burden, it wasn't effective, and given it has side effects, it was considered not beneficial.


You haven't given details of the numbers/size/extent of your mets, so it's difficult to comment on which way to go.

Edited by member 25 Feb 2025 at 00:08  | Reason: Not specified

User
Posted 25 Feb 2025 at 07:12

Hi Steve,


Sorry you find yourself in this position…why not phone the Specialist  nurses on here, they are wonderful and will take time to listen to your concerns. Obviously you want the best possible treatment available for your diagnosis so be proactive in finding out WHAT this is.


as far as Radiotherapy is concerned, I had little side effects from this treatment and they passed within a couple of weeks of finishing the treatment…..I found it a breeze, especially compare to ADT. I do know however that you can suffer some side effects long time after but so far I’ve been fine.


So, please follow this up, if you’re confused do everything you can to find out WHY?


Good Luck,


Derek

User
Posted 25 Feb 2025 at 09:58

Hi Andy 


I have not been given any details about the size/number/extent of nets they have never discussed that type of detail!


Can I ask for that information?

User
Posted 25 Feb 2025 at 10:31

Hi Steve,


I received similar treatment to yours, but in a different order. I was put on 3-monthly Zoladex injections as soon as I was diagnosed 3 years ago and soon after had six cycles of chemo followed by 37 fractions of radiotherapy. More recently, I have been on Apalutamide. I found the radiotherapy relatively easy to tolerate, with minimal and short-lived side effects and no longer term problems.


Not so the Apalutamide. I am finding the side effects tough going. I am currently on a reduced dose. That said, the Apalutamide did a splendid job of reducing my PSA. If you can tolerate it, I would stick with it.


It must be confusing receiving contradicting advice. It has been my experience that doctors like to test and study the results before changing treatment, so I factor this time lag in. I hope you get this confusion sorted soon. Good luck with your ongoing treatment.

User
Posted 25 Feb 2025 at 11:13

Originally Posted by: Online Community Member


Hi Andy 


I have not been given any details about the size/number/extent of nets they have never discussed that type of detail!


Can I ask for that information?



Yes, you are entitled to all the information about your diagnosis.


Ask to talk with the oncologist to get full diagnosis detail, and to ask their opinion on the benefit of radiotherapy. You can also ask for your hospital records, but these may not be helpful without the conversation with the oncologist.


Zapping the prostate in the case of metastatic disease is in effect wiping out the mothership (of the cancer). Tiny mets seem to be somewhat reliant on the mothership, and loss of the mothership combined with hormone therapy (and possibly chemotherapy) does seem to significantly set them back and even wipe them out. However, more substantial mets are going to be self-sufficient and in that case wiping out the cancer in the prostate seems to not be particularly beneficial as you have several motherships.


In the case of just a very small number of mets in the pelvis, they will sometimes offer to zap those with the prostate, and that's potentially curative (although not with a very high chance of a cure), but can still set the cancer back a long way. In complicated cases like this, it may be beneficial to be at one of the main cancer centres rather than the local district general hospital.

Edited by member 25 Feb 2025 at 11:14  | Reason: Not specified

 
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