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User
Posted 02 Feb 2025 at 08:40

Sorry for the long post.  What a rollercoaster.  30 November urology appointment hubby advised psa 450 advised suspect metastasis pc treat rather than cure (devastated understatement) Bone scan, Pet scan, mri later advised no metastasis and confined to pelvic area with spread to lymph nodes and seminal vessels T3b/4 N1 M0.  Told, looking at view cure and started hormone injections and RT in 6 months (ecstatic).  Appointment yesterday with oncologist at Weston Park.  He’s now saying that 50% it’s somewhere else with osa that high and just not shown up and that will probably need further treatment and unsure if doing the full RD as some nodes further away and worried about side effects to other organs !!! But maybe starting apalutamide alongside injections and 6 rounds of RT.  But this has to be agreed in MDT today.  I suppose what I’m asking if anyone else has had this and should we just accept they know best as everything I’ve read said if contained in pelvis can be cured !!! Thank u if you’ve got this far and appreciate all your support xx ๐Ÿฅฐ

User
Posted 02 Feb 2025 at 13:18

Hi and welcome:  sorry you and your husband have had to join the club that no-one wants to be in!

Unfortunately, some diagnoses can be a little vague (mine was, as by the time I was diagnosed the cancer had spread widely), and the oncology team can only work with the information they have.  The good news is that the hormone- and radiotherapy will target the primary tumour in the prostate and this, in turn, impacts the metastases too.

I would think they'll start the treatment and will closely monitor your husband's PSA to ensure that it's having the desired effect.  They can then adjust treatments, or add them, as necessary. 

Wishing both of you all the best:  right now is a horrible worrying time but the fight-back starts here!  If I may offer one piece of advice that I've found increasingly wise:  when I was diagnosed back in 2019, I asked my oncologist a zillion questions about treatments, etc.  He answered very patiently, and added:  "It's important to remember, don't make your life all about the cancer.  Remember to live as well."  He was, and is, absolutely right.  Have the treatments, do the right things, but don't forget to do the things you enjoy too.

 

Craig

 

User
Posted 02 Feb 2025 at 13:33

Hi Lisa.

I'm so sorry to hear of your husbands diagnosis.

I'm not medically trained or have personal experience of treatment for his T3b/T4 disease. There are fellas on here that have both stages and I'm sure that'll they pop along and help out.  

I'm such a pathetically slow typist and so easily distracted. That I've seen someone already responded before I'd finished mine and pressed save.

Cheers Craig. ๐Ÿ‘

Edited by member 02 Feb 2025 at 13:41  | Reason: Typo

User
Posted 02 Feb 2025 at 19:41

Sorry for what the two of you are going through. I think I personally would like the opportunity to try a curative treatment, and if you take that view, do express it, but also ask what the downsides might be. Even if the curative treatment doesn't work, it may well slow progression, and if another hot spot does show up, you may be able to have that zapped later on.

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User
Posted 02 Feb 2025 at 13:18

Hi and welcome:  sorry you and your husband have had to join the club that no-one wants to be in!

Unfortunately, some diagnoses can be a little vague (mine was, as by the time I was diagnosed the cancer had spread widely), and the oncology team can only work with the information they have.  The good news is that the hormone- and radiotherapy will target the primary tumour in the prostate and this, in turn, impacts the metastases too.

I would think they'll start the treatment and will closely monitor your husband's PSA to ensure that it's having the desired effect.  They can then adjust treatments, or add them, as necessary. 

Wishing both of you all the best:  right now is a horrible worrying time but the fight-back starts here!  If I may offer one piece of advice that I've found increasingly wise:  when I was diagnosed back in 2019, I asked my oncologist a zillion questions about treatments, etc.  He answered very patiently, and added:  "It's important to remember, don't make your life all about the cancer.  Remember to live as well."  He was, and is, absolutely right.  Have the treatments, do the right things, but don't forget to do the things you enjoy too.

 

Craig

 

User
Posted 02 Feb 2025 at 13:33

Hi Lisa.

I'm so sorry to hear of your husbands diagnosis.

I'm not medically trained or have personal experience of treatment for his T3b/T4 disease. There are fellas on here that have both stages and I'm sure that'll they pop along and help out.  

I'm such a pathetically slow typist and so easily distracted. That I've seen someone already responded before I'd finished mine and pressed save.

Cheers Craig. ๐Ÿ‘

Edited by member 02 Feb 2025 at 13:41  | Reason: Typo

User
Posted 02 Feb 2025 at 15:13

Thanks guys, appreciate your comments and love that phrase, will try and remember to do that ๐Ÿ‘๐Ÿปโ˜บ๏ธ

User
Posted 02 Feb 2025 at 19:41

Sorry for what the two of you are going through. I think I personally would like the opportunity to try a curative treatment, and if you take that view, do express it, but also ask what the downsides might be. Even if the curative treatment doesn't work, it may well slow progression, and if another hot spot does show up, you may be able to have that zapped later on.

User
Posted 02 Feb 2025 at 20:29
Thanks Andy, I am under the impression we donโ€™t have a choice and itโ€™s the decision of MDT meeting ?
 
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