My husbands recent diagnosis of advanced prostate cancer

Thank you Jamie, yes we know things could be much worse and are always grateful for that. Of course we would prefer not to be here just like everyone on this site. Getting Rob prepped now for treatment to keep him as fit and healthy as possible x

Sorry to hear the news Elaine and you do set such a positive tone but I imagine it takes a lot of energy to do that especially  when you know what  your OH has to go through. I’ve a feeling we might be following in your footsteps in a few weeks time so do keep us posted about how it’s all going.Good luck with it all both of you x

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

Edited by member 01 Aug 2023 at 11:32  | Reason: Not specified

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

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

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. 

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

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 👍

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

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

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

I’ll ask the question at the planning scan.

I’m guessing because we’re getting close my mind is going a bit into over drive again and I’m worrying if the micro mets are in nodes they might miss something. I have an ever growing list of questions for that day now 😂

Hope you’re ok x

Thanks Derek.

Really hope Rob finds it as easy then 🤞🏼

As I just mentioned to Chris, really strange that they have mentioned water consumption as it never came up at planning scan. 

We have a late session today at 5pm but the rest are mornings which is better. Luckily we’re only about 15 mins away from the Christie that we are going to aswell so very fortunate not to have to travel far.

Im sure we’ll feel better after today and we can start to get a routine from tomorrow 👍

Take care

Thank you everyone.

I think maybe Christie do it a certain way as it was the same as yours Dave….he didn’t need a full bladder, he had enema when he arrived and went to the loo 5 mins before the RT started. All went fine. Looks like the times are going to be a bit all over….tomorrows has already been changed from 9am to the afternoon 🙄 luckily we can be flexible but would definitely prefer mornings.

Thanks again

Elaine

Well it’s been a little while since I last posted. Feel like I’ve been struggling a bit more with everything recently, so I’ve just shut off from it. I think we always knew we would struggle more with RT & HT hence why Rob opted for surgery originally even though it had already spread to lymph nodes. Still no regrets on the surgery, we would make the same decision again.

Anyway Rob completed his RT on the 17th November. He did fine throughout and didn’t get too many side effects. He was aching quite alot around his hips and lower back, he was more tired at times and struggled walking distances as he was getting breathless. Being on HT aswell we assumed these were side effects from one or both treatments.

The weekend before Christmas Rob developed a cough suddenly, he’d been out for a long day with friends so thought he may have done a bit too much or just picked it up in the crowds. His breathlessness became worse and it was even affecting him while lying still. I booked an appointment to see the nurse at GP surgery, she was really thorough did lots of bloods and arranged a chest X-ray that day. One of the blood tests was D-dimer (which I hadn’t heard of) the nurse did say if this one came back high then we could get a phone call even in the middle of the night to say to go to A&E straight away. Two days later we got the call from the GP surgery asking if he had been to A&E (apparently the day before they had been trying to get hold of us and left messages on an old landline 🤦🏻‍♀️). So we were told to go straight away. Seven hours later after more bloods, ECG and CTPA scan we were told that Rob had a pulmonary embolism (blood clots in both lungs). They have assumed it’s treatment related and has travelled from his legs. The doctor said he thought the main danger had passed while the clots were travelling and some don’t make it this far 😢. He is now on medication, got to have some more samples and had to go for an ultrasound scan of his abdomen, something possibly around his liver. Fingers crossed it will be ok.

Has anyone else had any of these issues after Radiotherapy? Also worried about him staying on Hormone therapy 🤦🏻‍♀️ worried the treatment might kill him before the cancer ever would 😢😢