PSA rise

Hello Linda.

I can fully understand that you are concerned with any rise in PSA levels as your first instinct is that the HT is stopping working. To put things into perspective your husband has had a phenomenal PSA drop from 252 to 18.4 in only 6 months. This has far exceeded the criteria to say that the Prostap and aberaterone are working. PSA levels can fluctuate even when on HT and you don't know what the nadir is on this therapy alone as  you have only had one reading which has gone up slightly. The RT therapy will knock the cancer even further and hopefully kill all the cancer cells in the target area, including the lymph nodes that have been identified as a hot spot. This should result in a PSA nadir about 18 months after the end of treatment and this will be used as the baseline to determine if there is any recurrence further down the line.

Concentrate on getting through the RT first. All the best for the 27th and keep looking after each other. You are doing brilliant.

Thank you so much Alwayshope, I must admit to feeling jittery the nearer the radiotherapy gets.  I was already anxious as he hasn’t coped well emotionally so far and I’m trying to keep him in a positive frame of mind to get through it, funnily enough it’s the micro enemas  that he is dreading most of all. Then when I got that result today my mood took a nose dive, I think we all must have a degree in worrying by now.  What you say makes sense, thank you for your kind words, I feel less panicky now.

Big hugs

Linda 

Hi Linda

Alwayshope has said just what I was going to say - everything is going to plan - it's the reading 18 months after the end of RT that counts.

He's had his planning scan? - so hes been shown the box of micro-enemas and had a go? He's got his tattoos?

Then he's good to go for his "sunbed sessions". The only hard bit is going, parking and coming home. He will meet new friends - some worse than him some better. It was meeting someone in the waiting room at Christies in Oldham with Pancreatic Cancer that was a game changer for me - the poor lad won't be with us now  but his attitude, his resilience to the cancer and how cheerful he was made me realise what a lucky boy I am - and that's another reason why I am here today!!

I sailed though my 20 fractions - just a couple of issues with my number 1's and 2's but the Radiologists ask everyday about any changes to you and mine were a great set. 10 months down the line no side effects.

I finished fraction 20 thanked the radiologists - left some chocolates - walked down to the front door like the hulk - rang the bell - the entire waiting room and staff clapped - and 5 seconds later I was a blabbering wreck in a chair in reception with a box of tissues.

He will be fine - tell him to embrace the experience - it's not everyday someone gets potentially life saving treatment.

I can't half waffle - he will be fine once he get's the hang of it.

Best wishes - Brian.

Hi Linda

It was the thought of the micro enema that broke my husband's resilience!!! The first time he was going to use it he told me he was not going ahead with the treatment!!! We had to have 'words'.  All the way through the RT it was the enemas he moaned about the most - still does recall them with total distaste! I think it's because we are brought up to think of anything to do with poo and bowels as 'dirty' and a 'no go area'. I think we women are perhaps less put off because of childbirth, nappy changing , periods etc etc

I was a complete nervous wreck at the thought of the RT, side effects and even at the thought of the tattoos! I was not in the least bothered about the 'poo' side of things. As others say, get him to follow the instructions to the letter and to tell the radiotherapy team about any body changes. Ours were marvellous! My husband was tired for some time after the RT and was in a bit of a brain fog a lot of the time but we got through.

Re the PSA, I can't really advise you as my husband's started at 10. It had risen slightly the last time from 0.026 post RT to 0.034. The oncologist was not concerned and said the 'PSA will always bounce around'. It was something like 2.0 before RT but after being on HT for 3 months. But your husband's PSA had much further to fall in the first place!!!! We wrote all our questions down and presented them to either the radiotherapy team or the consultant when he had the periodic reviews during the RT. One time the team could not answer one of our questions and so she arranged for us to see the consultant oncologist the very next day to provide an answer! That's how brilliant they all were!

I found the RT hard going as I was doing all the driving. I was terribly, terribly emotional and anxious too. Now, 8 months on I wonder why I got so upset!!!

And... to date, apart from the fatigue and brain fog, my husband has had no side effects. I hope you have the same positive experiences!

Hi Brian

I've had a wee blip the last few days. Just when you stop worrying about one thing another comes along. I was concerned when there was a small rise because as well as the Prostap he was started on the Abiraterone and I just didn’t expect the rise as I was concentrating on the radiotherapy starting on 27th. I did speak to the nurse specialist who said it may well be due to a reaction to the gold seed markers, yep he has the gold seeds, his tattoos and has had a practise run with the enemas and a further chance to use it before the ct planning scan, but it still makes him anxious. I think mainly because we are an hours drive from the hospital so he will drive to the hospital and do it there. His radiotherapy is at 11 every day so he was going to get there early, mainly to try and get parked and do the prep beforehand. I was wondering though, if all goes well and he is seen at 11, how long does the radiotherapy itself take ? and do you have to wait around afterwards at all or just go home? Thanks for your help Brian and I for one just love your waffling lol.

Linda

Hi Linda.

Standard radiotherapy lasts minutes so your husband should be in the room for a maximum of 15 minutes as it can take just as long to line him up on the machine. Allow for the dash to the loo to empty the bladder and then home. Make sure he tells the technicians of any issues prior to each session. All the best for next week.

Good Morning Linda

It's normal - if you don't worry or have a "blip" then perhaps there's no emotions there. I know I have more than a blip now and again I walk away - enjoy doing something I like - and then get back on my journey. 

All is well in your case - it's the PSA level we are looking at 18 months after the RT is completed - that's his base line. I am sure there's an explanation for the blip.

I sailed through my radiotherapy - because I listened to the Radiographers and did what I was told to do (hard for me!!). I was lucky living just over a mile from the hospital, so I could walk. At Christies in Oldham we had a gated car part for RT patients - I never used it but had the code just in case.

Lorraine has appointments at Salford Royal - parking the is almost like finding the Holy Grail (other religions are available!) so I used an app I can't name  - a parking app - there are about 3 good ones. On the days of her appointments we rented someone's drive on a street about 100 yards from the hospital - peace of mind - no worries about parking and £ 3.50 for 4 hours - just turn up and park.

If he gets there in time to do his enema and relax he will be fine - it's a personal choice as to how long before the 11.00 appointment  he arrives. We had a cracking waiting room, T V, jigsaws, reading material - the lot. My appointments were all over the day but most late on. I would say half were on time and we had delays of up to an hour because of earlier problems BUT if they were running late they took the Prostate guys first due to them already having had an enema.

Once our name was called we were admitted to an inner waiting room and then after a few minuets called into the "sunbed" room. Off with your shoes, lie on the subbed and "show us your tattoo's" - at the same time having your "modesty" covered. It then takes four/five minuets to line him up. The Radiographers leave the room and you get 3 rotations of the equipment (one a scan to check you are in place) and two to zap the little buggers.

The radiographers come back in, help you down, you put your shoes back on and it's see you tomorrow. - all done in 15 minuets. He will be fine and it will be like shelling peas. If it's a full bladder scan it might be an idea to be aware of toilets ( large trees) on the way home.

There you go - more waffling.  He will be fine!!

I hope it goes well - and stop worrying  

Best wishes - Brian.

Hello Linda

Thought I would add my experience which  hope is reassuring. ou can see my profile by clicking on the Panda.  The Radiotherapy was a real worry to me but like most things you worry about the actual event is usually much better than you thought it would be. Everyone is different, but try to get into a routine that works for you. having treatment at the same time each day is very helpful in this respect. I would get to the hospital about 45 minutes before my appointment  and use the loo to empty my bowel and bladder. Not easy to begin with, but a good bit of advice I got from one of the radiographers was to get up and have breakfast, I had been reluctant to do this as I knew I needed an empty bowel. This stimulates the bowel and almost invariably I could go to the loo 30 minutes later. I mention this because on my initial RT, I had to leave the tratment table because my bowel wasn't empty. My hospital didn't want to use microenemas, but I did take Senna tablets throughout the 20 treatments which worked just fine. If your husband starts drinking 30 minutes before his appointment , he should be Ok for the RT. They scanned my bladder with ultrasound to check it was "full" but after 10 treatments I knew if I was OK, but it was still checked with the Ct scann that takes place before the RT is activated. Oh, and follow a bland diet.

In terms of the treatment, as has been mentioned, it only takes about 15 minutes in total. 10 minutes to get positioned on the table and for the prelimiary scans, and about 2minutes for the actual treatment. Keeping still is the only stressful part, otherwise relatively quiet and peaceful. No need to wait afterwards, apart from waiting for your husband to go to the loo with his full bladder! Also a good idea to line up one or two loo stop offs on the way home as you're likely to need them.

This doesn't add much to Millibob's advice but at least it reinforces what he says. I'm 3 months on from my 20 treatments and doing fine. 

Hope all goes well for you both

Bob

Hi WW

Thank you for your kind words and support. I have to agree the enema ordeal has been what has freaked him out the most. The thought of having to voluntarily stick something up his bottom has made him lose all sense! He managed fine to do the one before the CT scan so I’m hoping he will calm down a bit now he knows he managed it before. I too will be driving him which I’m uptight about as it is an hour away and in the city. I normally take the train to Edinburgh if I go there as it’s one way systems and no go areas etc are not easy but I’m sure I’ll manage it because I have to lol I just wish we could fast forward to the 22nd December and it was all over.  On the plus side I’ve been forced to get all my Christmas shopping over with early as we will be committed to the trip to radiotherapy for all of December until 22nd.  I don’t  know how I’d get through without all you lovely people in the group, it’s amazing how it helps just to relate to people going through the same maze of ups and downs and range of emotions.

thank you

Linda x

Hello Bob

Thank you so much.  All of that information is really helpful for us.  I am pleased and encouraged that it all went pretty straightforward for you and I hope that I am back here just before Christmas Eve to say the same in the hope that it will help others the way all you guys have helped me.  I must admit it has been stressing me out the nearer it gets, I feel like we go from one appointment to the next in a daze and it takes over every aspect of our lives,

Thsnk you again for sharing and I hope you go from strength to strength.

Best wishes and big hugs

Linda