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Newly diagnosed with Questions on Hormone Treatment

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User
Posted 16 Mar 2023 at 17:56

Hi

54 year old, healthy, active, newbie here who still cant believe hes joined this club.

My PC journey so far: :

Referred by GP (29/1/23) for PSA

PSA test (30/01/23) - 18.3

MRI PI-RADS 5

Biopsy : 4+5 (9)

Confirmed diagnosis 27/02/23, and advised MDT recommending RP surgery.

Sent for CT and PET scan. Advised today cancer spread from Prostate to pelvic bone and lymph nodes and my staging is T3bN1M1. Told treatment plan has changed following MDT yesterday and starts now, today by taking HT (Bicalutamide), then injections (cant remember how often) then after 3-6 months Radiotheraphy.  This dosent feel very good at all.

Im struggling right now with only having spoken to a Specialist Prostate Nurse over the phone about all this (although have no complaints about her). An appointment scheduled for next week with a Urology consultant has now been cancelled (because Im not having RP) and that I will have an appointment with an oncology consultant in a few weeks. Shouldnt I have seen / been given the opportunity to have spoken to a consultant before embarking on the treatment? It feels a big step based on a single telephone conversation and I m giving serious thought to getting a private consultation

Im also concerned about the side effects of HT as I have done little reading up on it in and how long its going to last. Any experiences welcome.

Cheers

Rob

User
Posted 16 Mar 2023 at 18:19

Hi Rob, 

Really sorry you find yourself here. 

Have they said how much bone they think is affected and how many lymph nodes etc?

My husband (also Rob) was originally diagnosed N1 M1b, we did get a second opinion and PSMA pet scan and they downgraded the M1b. So he had the operation in the end (we paid private)and they removed 14 lymph nodes including the 1 that was infected. He had an undetectable PSA for over 12 months, the last one a slight rise to 0.029….that isn’t considered a recurrence yet but keeping a close eye on it. 

He was put on bicalutamide at first and had 6 months of prostap but he stopped it after the op. He had some hot flushes and was generally more emotional (not sure if that was partly due to diagnosis anyway) but generally was ok with it. 

Lots of details on my profile if interested.

Wishing you the very best of luck Rob 👍

User
Posted 16 Mar 2023 at 18:23

Hi Rob,

Not the news anyone wants to hear. Right now you must feel like someones pulled the carpet from under you and you are sliding away with nothing to stop you. Everything has changed very quickly.

The staging of your disease at G9 with cancer spread and staging at T3bN1M1 means that surgery is not an option for containment and would in fact saddle you with all the surgery side effects for no benefit.

So you have been spared that initial decision panic of choosing surgery vs radiation which can be a hard one to make.

Some combination of radiation and drug related treatments are your remaining option.

The pathway into HT/RT etc is a more relaxed progression and you will find you get time to understand what is going on as you move into it. Side effects are also slower to appear so not an immediate burden.

You should find that your treatment team wi be very good at providing you with information and people on here will be able to help with making sense of it.

All the best.

John 

User
Posted 17 Mar 2023 at 08:16

You are a very similar age, PSA and Gleason to me at diagnosis. I was T3 n0 m0 so you are in a worse position than me on that front.

For me it was an immediate start on bicalutamide and then 3 month injections followed by HDR brachy and RT. HT was a total of 24 months.

The good news is five years later my PSA is stable at 0.1 . If your M1 is near the prostate and can be whacked with radiotherapy, or as in Elaine's case wasn't actually cancer you may be curable. If incurable a long life is possible on HT.

The proposed treatment sounds the best option and I can't see much reason to delay it's start. I guess if you have plenty of money you could pay for a private PSMA PET scan it may show other locations of cancer, such a scan would be better done before you start HT, so if you want to go down that route get your skates on. Prostate cancer is a slow disease but yours is already advanced.

I'm not sure if the PET scan results would change your treatment options though.

Dave

User
Posted 18 Mar 2023 at 08:00
At your age and fitness level Rob they should be hitting it hard with HT, Chemo and radiotherapy. Surprised you haven't had an opportunity to discuss treatment options with your assigned Oncologist.

Wishing you all the best with the treatment path you take.

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User
Posted 16 Mar 2023 at 18:19

Hi Rob, 

Really sorry you find yourself here. 

Have they said how much bone they think is affected and how many lymph nodes etc?

My husband (also Rob) was originally diagnosed N1 M1b, we did get a second opinion and PSMA pet scan and they downgraded the M1b. So he had the operation in the end (we paid private)and they removed 14 lymph nodes including the 1 that was infected. He had an undetectable PSA for over 12 months, the last one a slight rise to 0.029….that isn’t considered a recurrence yet but keeping a close eye on it. 

He was put on bicalutamide at first and had 6 months of prostap but he stopped it after the op. He had some hot flushes and was generally more emotional (not sure if that was partly due to diagnosis anyway) but generally was ok with it. 

Lots of details on my profile if interested.

Wishing you the very best of luck Rob 👍

User
Posted 16 Mar 2023 at 18:23

Hi Rob,

Not the news anyone wants to hear. Right now you must feel like someones pulled the carpet from under you and you are sliding away with nothing to stop you. Everything has changed very quickly.

The staging of your disease at G9 with cancer spread and staging at T3bN1M1 means that surgery is not an option for containment and would in fact saddle you with all the surgery side effects for no benefit.

So you have been spared that initial decision panic of choosing surgery vs radiation which can be a hard one to make.

Some combination of radiation and drug related treatments are your remaining option.

The pathway into HT/RT etc is a more relaxed progression and you will find you get time to understand what is going on as you move into it. Side effects are also slower to appear so not an immediate burden.

You should find that your treatment team wi be very good at providing you with information and people on here will be able to help with making sense of it.

All the best.

John 

User
Posted 17 Mar 2023 at 08:16

You are a very similar age, PSA and Gleason to me at diagnosis. I was T3 n0 m0 so you are in a worse position than me on that front.

For me it was an immediate start on bicalutamide and then 3 month injections followed by HDR brachy and RT. HT was a total of 24 months.

The good news is five years later my PSA is stable at 0.1 . If your M1 is near the prostate and can be whacked with radiotherapy, or as in Elaine's case wasn't actually cancer you may be curable. If incurable a long life is possible on HT.

The proposed treatment sounds the best option and I can't see much reason to delay it's start. I guess if you have plenty of money you could pay for a private PSMA PET scan it may show other locations of cancer, such a scan would be better done before you start HT, so if you want to go down that route get your skates on. Prostate cancer is a slow disease but yours is already advanced.

I'm not sure if the PET scan results would change your treatment options though.

Dave

User
Posted 18 Mar 2023 at 08:00
At your age and fitness level Rob they should be hitting it hard with HT, Chemo and radiotherapy. Surprised you haven't had an opportunity to discuss treatment options with your assigned Oncologist.

Wishing you all the best with the treatment path you take.

 
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