I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

My husbands recent diagnosis of advanced prostate cancer

Email this conversation Print this conversation

User

Posted 09 Sep 2023 at 00:16

Elaine , I don't really know and I can't find a simple explanation. Perhaps a bit like whole body scans, they don't always actually do the whole body.

They struggled to carry out my recent SABR treatment because the bowel kept getting in the way. My understanding is that they still have to miss certain structures. They still need to know your are in the right starting position. My last SABR treatment used the skin pattern instead of tattoos for alignment.

I phoned my radiotherapy department a couple of times and they were more that happy to answer and explain technical issues regarding treatment.

Hope all goes well for you both.

Thanks Chris

User

Posted 09 Sep 2023 at 00:21

Thanks Chris.

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

User

Posted 09 Sep 2023 at 01:17

I guess there are areas they want less radiation in, such as bowels and bladder, and other areas they know will want a high dose such as prostate bed, plus everywhere else which wants a moderate dose. So the planning scan will produce a 3d map, yes it will be a bigger map, bit it still needs to be accurate and the tattoos mark where the centre of the map is, which may not actually be the prostate bed.

An analogy would be the London Ulez map, compared to the old smaller congestion charge zone. If you said the new map is 40 miles wide so it doesn't matter if we misdraw the borders by a couple of hundred yards, I think you would find some very upset people on those borders.

Dave

User

Posted 09 Sep 2023 at 09:59

Hi Elaine, when I had SRT the three dot tattoos were used to get me into position.

After that they did a 3D cone scan and adjusted the treatment bed position to take movement of bladder and bowel into consideration. My oncologist was very concerned about collateral damage and had his top radiologist checking and adjusting my position every day. Hope this helps when asking questions.

Ido4

User

Posted 22 Oct 2023 at 22:26

So Rob had his planning scan and all went ok. He starts his SRT tomorrow 🤞🏼 any last minute thoughts or advice welcome. We’re just trying to take it in our stride as best we can and hoping to get a good balance of exercise and rest in a hope he doesn’t become too fatigued.

His last PSA was 0.044 and testosterone 0.6. Do these figures look ok going into RT? These were done 9 weeks after starting HT.

So here we go again….let’s do this 💪🏼🙏🏼xx

User

Posted 22 Oct 2023 at 22:49

Elaine, I think techniques have changed since my treatment in 2017, make sure he gets his bladder full right. Being hydrated does make a difference to how water passes through the body. I drank on the way to hospital, checked with reception that there were no delays. I then emptied the bladder and drank the required amount of water.

Hope all goes well.

Thanks Chris

User

Posted 23 Oct 2023 at 08:23

Thinking of you both and hope all

Goes smoothly. You’ve got this! Xx

User

Posted 23 Oct 2023 at 08:40

Hi Elaine,

Good luck for your OH and the RT today. If it’s any consolation I found RT a breeze compared with HT. he’ll get into a routine with the enemas and water consumption before each session and hopefully your times will be about the same each day, it makes a difference I think. One thing I found is that it helped if I did something to keep my mind of needing to pee for the 30mins wait. I wrote my poem about my journey and the time flew past.

If you’ve got a long journey home, take an emergency kit including a pee bottle, towel and wipes in the car. The urgency can increase during treatment and just having that safety net with you in car helps psychologically. I on,y needed to use it once in 20 sessions.

All the best

Derek

User

Posted 23 Oct 2023 at 10:46

Good luck with your treatment like decho I had 37 session's off radiotherapy and found it a breeze also found hormone therapy tolerable 👍 gaz

User

Posted 23 Oct 2023 at 11:18

Originally Posted by: Online Community Member

Hope all goes well.

Thanks Chris

Thank you Chris.

Although they said to keep hydrated they haven’t mentioned about his bladder having to be at a certain capacity? I just find it strange as so many mention this. I assumed they would have asked him to drink or pee at the planning scan but they didn’t 🤷🏻‍♀️

User

Posted 23 Oct 2023 at 11:19

Originally Posted by: Online Community Member

Thinking of you both and hope all
Goes smoothly. You’ve got this! Xx

Thanks Jayney xx

User

Posted 23 Oct 2023 at 11:25

Originally Posted by: Online Community Member

Hi Elaine,

All the best

Derek

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

User

Posted 23 Oct 2023 at 11:27

Originally Posted by: Online Community Member

Good luck with your treatment like decho I had 37 session's off radiotherapy and found it a breeze also found hormone therapy tolerable 👍 gaz

Thanks Gaz. Really hope Rob is the same. He’s been ok on the hormones so far but I’m just waiting for it to all hit at once I think 🤦🏻‍♀️ he seems to be getting a few little flushes for now but I imagine they could get a lot worse.

Rob has 20 sessions so not too bad. I’m sure it will go quickly 🤞🏼🤞🏼

User

Posted 23 Oct 2023 at 12:51

In the end I only got 20 session of RT as the Onco wasn’t happy about collateral damage to the bowel after the CT planning scan….my plumbing was in the wrong place! He thought it was higher risk than that of spread elsewhere so I will just have to wait and see.🤞

Elaine, morning is good as is 15 mins drive. If the staff are anything like as wonderful as the ones in the Western in Edinburgh, Rob will be put at ease.

Surprised he didn’t need to drink water for his plannng scan? Maybe they’re using a different type of machine?

Derek

User

Posted 23 Oct 2023 at 12:55

He will be fine hopefully I was waiting for side effects from decapeptyl but they were very slight the radiotherapy was no problem even the 37 session's required went with ease gaz 👍

User

Posted 23 Oct 2023 at 14:47

When I had RT at Christie they did not ask for a specific bladder level. In fact they wanted you to empty your bladder just before RT. It depends on the hospital and where they are zapping.

Dave

User

Posted 23 Oct 2023 at 17:38

Originally Posted by: Online Community Member

Hope all goes well.

Thanks Chris

Thank you Chris.

I was told to drink 3 plastic cups of water after emptying my bladder and wait 20 minutes. With modern machinery and techniques they perhaps rely on the scans.

Thanks Chris.

User

Posted 23 Oct 2023 at 22:18

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

User

Posted 23 Oct 2023 at 22:56

Yes, I was given my first weeks appointments by letter, and when I arrived on day one, the RT receptionist said throw that away and told me what time my next three appointments were. I think I then asked if I could have afternoons only and that wish was granted.

Dave

User

Posted 03 Jan 2024 at 22:54

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 😢😢

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.