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Partner having tests

User
Posted 11 Mar 2025 at 14:38
Update

PSMA pet ct scan is scheduled for this Friday at Musgrove park hospital in Taunton!

Travelling up on Thursday from Cornwall as scan is booked for 12 noon on Friday, we’ve been lucky enough to find a hotel a stone’s throw from the hospital, phone calls to my line manager to inform them and arrange necessary leave, we will stay 2 nights in Taunton and come back home on Saturday morning. Then it’s just a matter of awaiting the results, we’re now under the care of the oncology team (having already been referred by urology) and at least he can start his hormone treatment after the scan

User
Posted 15 Mar 2025 at 18:58

PET-CT scan done yesterday, took around 2 hours, sounds like the results should be within a week or so. We stayed at a really nice hotel in Taunton, (The Corner house hotel), which was a stone’s throw from Musgrove Park, (5-10 minutes walk away)so we made it into a mini break for us both, and enjoyed some lovely food at the hotel and had a meander around the town after the scan, back home now, and he’s enjoying the rugby 🏉 !! 
He has now started his hormone treatment ( as instructed by the CNS to start the day after his scan) which is Bicalutamide 50mg once daily 

Edited by member 15 Mar 2025 at 19:36  | Reason: Not specified

User
Posted 20 Mar 2025 at 12:20
Hi everyone

We’ve got an oncology appointment on 9th April, and he’s having his first hormone injection a week tomorrow ( halfway through the Bicalutamide course as instructed)

Will update after we’ve seen the oncologist

Hope everyone is keeping well 🙏🙏

User
Posted 25 Mar 2025 at 18:50
Update;

Well he managed to speak to someone in Urology today who accessed the PSMA pet scan results and there is bilateral lymph node involvement in the pelvis, but nothing else apparently. We are still seeing the oncologist on the 9th April, presumably to prescribe further treatment and discuss management plan but just knowing something is enough to sustain us for now, it was the not knowing anything that was getting to us both. He has his first hormone injection on Friday this week when he will have had two weeks of the hormone tablets.

Hope everyone is keeping well.

User
Posted 26 Mar 2025 at 11:46

Great news that it’s confined to the pelvic area, Kate. I agree, the waiting is the worst bit, by far. Hope all goes well with the injections and with the oncologist appointment. 

User
Posted 26 Mar 2025 at 22:00

Thanks Kazzy, 

how are you doing? 

User
Posted 27 Mar 2025 at 02:13

Not too bad thanks. He finished his 20 sessions of RT three weeks ago, and still has 2½ years of HT to go, including 1½ years of Abiraterone. Still very tired all the time. Gym sessions with the PT are helping a lot (twice a week) although they floor him for the rest of the day. It’s a relief that the RT is over but I’m struggling a bit with not knowing if it killed the cancer or not, and of course we won’t know till after he finished HT!! I realise everyone must feel this way though. Hoping that once his energy levels improve we can try and forget it a bit, as it’s constantly at the forefront of our minds just now. He’s definitely improving day by day but still a long way to go. X 

User
Posted 27 Mar 2025 at 07:14

Originally Posted by: Online Community Member

Not too bad thanks. He finished his 20 sessions of RT three weeks ago, and still has 2½ years of HT to go, including 1½ years of Abiraterone. Still very tired all the time. Gym sessions with the PT are helping a lot (twice a week) although they floor him for the rest of the day. It’s a relief that the RT is over but I’m struggling a bit with not knowing if it killed the cancer or not, and of course we won’t know till after he finished HT!! I realise everyone must feel this way though. Hoping that once his energy levels improve we can try and forget it a bit, as it’s constantly at the forefront of our minds just now. He’s definitely improving day by day but still a long way to go. X 

 

What did you both think were the main side effects from the radiotherapy for him? Sounds like fatigue is a major factor. Glad he’s improving xx 
I know what you mean, it’s constantly there isn’t it. We’re trying to keep ourselves distracted with doing nice things, like our trip to the theatre last weekend, and we’re planning a similar thing - a trip to London, for a long weekend for his birthday in May. I’m booking us theatre tickets to see Starlight express as a birthday treat for him as he’s longing to see it. 
He went back to work yesterday and I think that will help keep his mind occupied, but I said to him he has to pace himself, he’s an X Ray Porter , so lots of walking and he does long shifts, so we’ll just have to see how that goes, especially once he starts radiotherapy. 

Edited by member 27 Mar 2025 at 07:26  | Reason: Not specified

User
Posted 29 Mar 2025 at 00:44

That’s great that you’re doing lots of fun things together just now. It will really help you both not to focus entirely on the cancer … although it’s never far from your mind, I know. 

As for RT, everyone is different and hopefully your husband’s experience won’t be too bad.  Our experience was that the first two weeks were pretty much ok. A little more tired than usual, but maybe that was partly just the daily round trip to the hospital. By the beginning of week 3 he started peeing more frequently and with greater urgency. It was a challenge if we were driving for more than half an hour without a toilet stop. Fatigue stepped up a notch too. During that week the bowel also started to be affected, so urgent diarrhoea and passing mucus several times a day. On the advice of the lovely folk on this forum we made up an “emergency pack” for the car, with change of clothes, baby wipes, a plastic bag for any soiled clothes. He only needed it twice but thank goodness it was there!! Towards the end of the fourth week the exhaustion kicked in, and with it the low mood (unsurprisingly). The 7-10 days after the RT ended was the hardest. He was totally drained and just wanted to sleep day and night, between toilet trips and food - which he made himself eat so he could take his meds. He had awful acid reflux too, often making him sick. It was worse than either of us had expected, and heartbreaking to see him like that.  However after the 10 days things improved dramatically day by day.  Three weeks since finishing RT and he’s still back and forward to the toilet a lot, with considerable urgency. His bowels are still temperamental, but we’ve started reintroducing fibre, albeit gradually. We have to be careful that he doesn’t get overtired as he doesn’t bounce back quickly, but he’s definitely making progress. Whenever we have bumped into friends or been with the family their initial reaction has been to comment that he’s looking and sounding great, and they’re delighted to see him back to his old self. However if we’re still chatting half an hour later they notice him losing his spark and it’s not long before he’s pale and drained. 

So my advice would be not to make any particular plans from the final week of RT through to about 3-4 weeks after. If things go well and side effects are minimal you will enjoy making last minute plans, whereas cancelling plans is very demoralising. (We had to cancel a theatre trip and lost £120, but I know others have had to cancel holidays, which would be far worse!!). The main thing though is that if your husband does have a similar experience to mine, don’t despair as it really is just temporary. I hope being forewarned is helpful, but I do stress that not everyone has such a hard time with it. 

Wishing you both all the very best of luck with it. 🍀🍀🍀

User
Posted 30 Mar 2025 at 10:53

Thanks Kazzy, 

I’ll definitely keep your advice in mind. If he has RT ( and it sounds likely), it’ll be at our local hospital where we both work and it’s luckily only a 5 minute drive as we live very close. I’ve said to my boss that if needed I’ll reduce my hours so I can be at home if needed to look after him. We’re meeting the oncologist on 9th April for an hours appointment so I’m sure he’ll go through the treatment process with us then. 

User
Posted 31 Mar 2025 at 00:53

Being 5 mins from the hospital will make such a difference. 😊 My husband’s accidents happened when he couldn’t hold on till we got to the hospital, even though we’re only 30 mins away, and the stress and anxiety caused by fear of accidents was very tiring for him. Good luck! 

User
Posted 01 Apr 2025 at 04:05

Hi Kate,

I haven’t really been on here for some time so only just saw your post.

My husband was diagnosed with spread to lymph nodes in 2021 G7 (4+3). He was also fairly certain he wanted surgery and we found someone to do it but had to go private (originally diagnosed with mets in bone but that turned out to be incorrect). Psychologically at the time it was the best route for him as he felt the cancer was being taken away (he removed 14 lymph nodes too). He was upgraded to G9 after surgery.

After 12 months his psa started to rise a bit, he had a PSMA pet scan which didn’t show any cancer, but we didn’t take the chance on waiting for something to appear and he had SRT with 2 years HT. Luckily he’s managed well on HT (loss of libido, some weight gain and blood sugar increase) but we’ve been enjoying life to the full. He found the RT easy enough but did get a blood clot (PE) shortly after….but don’t know if treatment was the cause. 

We don’t have any regrets on the path we took and know it was the best thing for us at that time. Just a waiting game for us now.

Wishing you and your husband all the very best of luck for treatment and his next appointment. Hoping your in-laws are doing ok aswell.

Best wishes

Elaine

User
Posted 02 Apr 2025 at 07:09

Hi Elaine 
Good to hear your husband is doing well, I will mention the private surgery option to Ian  (although I’m sure he’s already considered it), but we’ve been told it’s not an option by the cancer nurse specialist because it’s already spread outside the prostate, (seminal vesicle and lymph nodes in pelvis) but we can raise the possibility with the oncologist next week. They are confident they can cure it with hormones and radiotherapy so we’re holding on to that as a positive for now 

Edited by member 02 Apr 2025 at 07:15  | Reason: Not specified

User
Posted 06 Apr 2025 at 10:55

Really great news they are getting your husband sorted with a plan.

Rob ended up having both so I guess many people would say what’s the point, and that surgery is an emotional response to just wanting the cancer out. That might be the case but I think emotion & psychology play a huge part in a cancer diagnosis and how successful treatments can be, so it definitely made a huge difference to Rob and us generally.

Hopefully your husband will tolerate the RT as well as Rob. Everyone seems to be different but we had a weekend away to the Lake District while he was in the middle of it (they don’t do RT at weekends) I asked for an early appointment on the Friday and late on the Monday. We had a lovely walk around Buttermere lake, some nice food a couple of glasses of wine even and he was just fine. One morning we stayed in the hotel room for a couple of hours to be close to the toilet but other than that no issues and it was a perfect break during what could have been a difficult time. 

Wishing you both all the very best x

 

 

User
Posted 07 Apr 2025 at 10:45

Getting more anxious now as the first appointment with the oncologist looms, it’s on Wednesday this week, have to say our respective managers at work ( we both work in the county hospital where Ian’s having his tests and treatment), have been amazingly supportive and kind. We had a lovely day out at the coast yesterday, he went surfing 🏄‍♂️ which he loves doing, and I relaxed on the beach with a good book, we took a picnic and had a lovely relaxing day. 
We are going to write some questions down and take them with us, (I always take a notepad and pen as we invariably could forget things that are said) 

Weve both got a few days off from Wednesday to Sunday to do nice things with after the appointment, weather looks good too ! 

Hope everyone is keeping well? 

Edited by member 07 Apr 2025 at 10:51  | Reason: Not specified

User
Posted 13 Apr 2025 at 01:12

Ok so relatively positive appointment with oncology,
4 months of hormone therapy before radiotherapy starts, and the addition of Abiraterone and prednisone, the hormone therapy to include the latter and Zoladex injections to continue for 2 years and radiotherapy (external beam) in about 4 months time ( to allow the hormones to do their thing)
Radiotherapy for 4 weeks x 5 times a week, warning that there are side effects and long term effects from radiation,
Aim is curative but we won’t know for definite until about 18 months after the 2 years of hormone therapy is completed
Lots to take in , blood tests every fortnight as well for the next 8 weeks because of the new addition of Abiraterone ( can affect the liver, and potassium levels apparently)

Hope everyone is well

I mentioned the back pain and pelvic pain but oncologist doesn’t think that is related to the PC

There is a fee for the Abiraterone as it’s not freely available on the NHS (£70 a month) 

Also got given more literature to read and I noticed that the macmillan nurse who sat in on the appointment had marked an asterisk next to the CPG (Cambridge Prognostic group) paragraph in the booklet as Ian being CPG 5 because, I assume because of his PSA score and the Gleason score of 4+3 

 

Edited by member 13 Apr 2025 at 01:18  | Reason: Not specified

User
Posted 13 Apr 2025 at 07:51

Pleased that you now have a definitive pathway. In respect of CPG 5 I suspect that is as a result of lymph node involvement. My understanding is that fully contained within the prostate Gleason 4:3 is CPG 3. I stand to be corrected if I am wrong.

User
Posted 16 Apr 2025 at 08:54

I suspect you're right. Ian is 4+3, T3b as the pesky little cancer cells have broken out of the prostate and are in the seminal vesicles and pelvic lymph nodes but not for long, they're being starved by the hormones and then they'll be zapped to kingdom come by the RT! 

Edited by member 16 Apr 2025 at 08:55  | Reason: Not specified

 
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