My husbands recent diagnosis of advanced prostate cancer

User

Posted 02 Aug 2023 at 01:20

Originally Posted by: Online Community Member

Hi Elaine

I had gold seed markers followed by planing CT scan 10 days later and starting RT 4 weeks after that. RT was 20 fractions over 4 weeks.

Hope that's a help

Peternigel

Thank you Peternigel, hope you are doing well.

Just trying to plan the rest of our year the best I can, so that is helpful.

I can see I’m going to have to spend more time researching RT as I’m not really sure what the gold seeds are. I’ve spent most of my time on prostatectomy and HT so feel I’m going into this a bit blind.

Wishing you all the best

User

Posted 02 Aug 2023 at 05:45

The exotic gold seeds are inserted to establish a definite location for the RT to be aimed at. They're injected by inserting a slightly scary tool into the anus, followed by three quick insertions into slightly different spots in the prostate. In practice it's quite painless.

They're usually accompanied by some dot sized tatts, one on each hip and one central one over the prostate. these are also locating points, so that each time the long-suffering patient is place on the bed for RT, the nurses can easily get them into exactly the same position each time, using a laser beam to align the tatts. The "bed" used for RT is [at least this was my experience] set up with a whole lot of hydraulic controls so they can manouvre people into just the right spot.

Jules

User

Posted 02 Aug 2023 at 09:04

I think it depends on the machine used. I just completed RT and there were no gold seeds or tattoos. They did the positioning using digital imagery.

User

Posted 02 Aug 2023 at 09:34

Just another variation. I had my planning scan a week before RT started. I had the three tattoo markers and no gold seeds.

User

Posted 02 Aug 2023 at 11:38

Thanks guys for all your reply’s, really helpful. It would seem again every situation is different and I think it’s going to be a wait and see what will be happening for Rob. Hope you’re all doing really well x

User

Posted 02 Aug 2023 at 13:01

Hi Elaine, my husband had his RT a few months ago and apart from the first session when we had to stop quickly for him to spend a penny which was unusual for him, the res of his 6 sessions were quite uneventful. Post RT he did have some issues with stomach cramping . He was told about these side affects. However it did not stop him form his tennis and badminton.

User

Posted 02 Aug 2023 at 16:32

Originally Posted by: Online Community Member

Thanks for the information and advice Maud, really hope Mike is still really well and keeping doing his tennis and badminton x

User

Posted 08 Aug 2023 at 23:38

So Rob started a 4 week course of bicalutamide on the 01/08/23, today 08/08/23 he had his first 6 monthly decapeptyl injection.

I never thought really as he was ok with HT before, but does anyone know if it’s not recommended to exercise on injection day? We were in the gym this morning doing weight, he had injection at 1:30pm and then we’ve done a 5k walk this evening. He’s had some aching in his bum (injection site) and leg (his last prostap ht was injected into stomach). Just wondered if this is normal and how long it might last.

Thanks

Elaine x

User

Posted 09 Aug 2023 at 07:05

Yes totally normal. It’s intra-muscular high in the buttock and can cause 24 hr deepish pain. Sometimes spread to leg if they Nick a nerve in the area 👍

User

Posted 09 Aug 2023 at 08:00

Originally Posted by: Online Community Member

Yes totally normal. It’s intra-muscular high in the buttock and can cause 24 hr deepish pain. Sometimes spread to leg if they Nick a nerve in the area 👍

Thanks Chris.

I was thinking it might have been with us doing too much exercise on the day of the jab. Fingers crossed it’s better later today 👍

User

Posted 09 Aug 2023 at 08:28

Hi Mike had slight pain after his especially as he played tennis straight after. Didn’t last long though.

User

Posted 09 Aug 2023 at 08:32

Thanks Maud. He still felt it a bit this morning. He had some paracetamol for bed. Hopefully will be fine later.

User

Posted 22 Aug 2023 at 11:21

Just some positive news. Hubby had his results last week for his latest PSA result and so releived that it was within the normal range. At 81 years of age and with his diagnosis last year for advanced prostate cancer he is doing well. So far he remains extremely active and enjoying life. Mike is being so positive and whilst he realises he is a lot older thant many on the forum, he will keep doing everything possible to remain in good health. So sending lots of positive vibes to all on the forum.

User

Posted 22 Aug 2023 at 18:20

Good news Maud and long may it continue x

User

Posted 22 Aug 2023 at 19:24

Originally Posted by: Online Community Member

Brilliant news Maud, so pleased for you and Mike. He definitely just needs to keep doing what he’s doing as it’s obviously working 👍

Wishing you lots more many happy and healthy years x

User

Posted 23 Aug 2023 at 15:35

Hi Elaine and everyone,

Just wanted some advise.

I have had two different opinions from two urologists.

one says have surgery the other says not as you will end up having RT anyway.

may stats are t3g N0M0 although having to PSMA to confirm this.

gleason was 5+4 with some seminal vesicles involvement. No Lymph node involvement up to now.

any advise or experiences would be great fully received

thanks

Mark

User

Posted 23 Aug 2023 at 16:16

This must be so confusing for you having two urologists giving you different advice. I had a similar situation with my husband however not to do with surgery. I actually spoke to a specialist Prostate cancer nurse at the hospital and as she knew both consultants her advice was very helpful. Of course the choice was made by my husband and it was the right one. I am sorry this hadn’t helped you at all. Hopefully the forum will provide useful information and advice.

User

Posted 23 Aug 2023 at 16:20

Hi Mark1,

Could you start a new thread? People on this site don't officially "own" a thread, but they do seem to evolve and tell one person's story.

If you start your own thread, all the details about you will end up in one place.

Starting a new thread is harder on this site than it should be. You need to choose a topic even though no one pays attention to it, and it must have a unique title. You then have to wait a few hours before it is approved.

Dave

User

Posted 23 Aug 2023 at 16:22

Hi Mark,

I think this is definitely a personal choice and how you feel about the many different possible outcomes.

Rob always wanted surgery, even when he thought it was in his bone. Many argued why would you want double side effects of RARP and then RT (if and when) it was needed, but he was ok to take that risk. Of course we were hoping for a miracle that RT wouldn’t be needed and all the cancer would be gone (obviously not the case). We were also fortunate that Rob really dealt with the op well and continence was pretty great. He does suffer ED but we completely prepared ourselves for that and I find the ED easier to live with than the way HT changes him.

I suppose now he needs the RT and on HT for 2 years we may have regrets but I can honestly say we don’t have a single one. He’s had a really great 18 months imagining he was cured too….so a bonus! I also think we’re better prepared to deal with the RT and HT so I feel more positive about the treatment. (I never assumed he was cured).

This is purely just our feeling and experience and I know some men really struggle after RARP and would certainly not agree with the path we took.

I would prepare for all the side effects of both scenarios and try to see which you could manage better.

Hope this helps and good luck

Elaine

User

Posted 08 Sep 2023 at 23:37

Have a question about SRT and wonder if anyone can help.

Rob will be having what I assume is EBRT to prostate bed and pelvic nodes. He has a planning scan in October where he will have the tattoos.

I can’t quite understand if they are targeting the whole pelvic area….why tattoos? I know they would have to be careful of collateral damage but I assume they don’t target every lymph node so how do they get it all….won’t some be missed?

Any advice on this would be greatly appreciated.

Thanks

Elaine

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