Post RP and SRT journey - July 3023 PSA test update

User

Posted 18 Oct 2018 at 11:48

Originally Posted by: Online Community Member

Cheers Lynn

I understand that it can be quite a while after RT and they don’t draw blood for a good few months?

I know this is going to be a long and probably stressful wait but I am going to do my damnedest stay positive.

You should be hitting true nadir about 18 months post-RT but the HT can mess with this a bit. It's a while back now but I think the onco told John they wouldn't look at his PSA seriously until at least 3 months after the HT was out of his system.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Oct 2018 at 16:26

I had a review with a specialist nurse at the end of salvage radiotherapy and as Lyn says they are just checking how you are with side effects etc. and what to expect over the next few weeks. I had my review with the oncologist a month or so later and all he said was that the radiotherapy went to plan and asked how I was doing.

I will have my last PROSTAP 3 injection around 3/1/19 and my oncologist wants to see me in July as we will get a picture of my true PSA by then.

Like you I am nervous about this.

Ido4

User

Posted 19 Oct 2018 at 06:55

It’s a long haul isn’t it, Ian.

Made harder by the fact that each of us gets different treatment even if similar in situation, e.g. I never got an MRI or PET scan during my SRT prep, just a planning one. My onco never discussed the planning scan with me.

I’m going to just put my head down and concentrate on mental and physical well-being hit the next six months. Step 1 - lose the half stone I have put on with this bloody diet 😀

Keep the faith!

User

Posted 19 Oct 2018 at 16:59

Just had my end of SRT review with the Dr.

After that a faster zap as the imaging arm was playing up. They said that as I had done so well on imaging and placement they were happy to zap away based on markers alone. Got me out quicker!

One session to go on Monday!

Was asked about side effects and said "OK apart from a couple of dodgy days".

He said no more HT. I asked why (knowing full well) and he said with my pathology (T2C and just a PSA rise) the risks outweighed the benefits. I guess I can take that as a positive.

PSa and T check in four months.

Asked about aspirin and keto and he basically said "on your head but meat keto is a bad idea." I said it would be vegan / pescetarian vegan.

Final words - "sometimes SRT does not work" and neither of us broached outcome stats.

I am just going to ring the bell tomorrow, have a few glasses of wine and reflect on the fact that I have a good life and it could be a hell of a lot worse!

Onwards and upwards!

Edited by member 19 Oct 2018 at 17:03 | Reason: Not specified

User

Posted 20 Oct 2018 at 09:07

These highly technical machines break down sometimes. I suppose they are in constant use.

One of the machines next to the one I was on was out of action for days at a time.

The machine I was on started the treatment lap and suddenly stopped about a fifth of the way through. A radiologist came in and said they were rebooting the comp so keep still! Apparently they are programmed to continue the treatment from where they left off.

I was told there was a 40% chance of SRT success.

You’ve done well, nearly there. Ring that bell, have a few glasses of wine and enjoy your life.

Best wishes, Ian.

Ido4

User

Posted 20 Oct 2018 at 12:15

Yea

I was told they run on the order of 40 sessions per day per machine - relentless!

As I said, my onco refused to discuss odds but the paperwork I got that kicked off the SRT said "only 30% of those with recurrence have clinical recurrence and mortality is only 6% of those".

EDIT: and SRT improves the odds even more.

Bloody confused but sounds better than a kick in what is left of my 'nads :)

Yup, one more day. Already had the wine (a lot as we went to a friend's birthday party) and am looing at the good things!

Edited by member 20 Oct 2018 at 12:28 | Reason: Not specified

User

Posted 20 Oct 2018 at 19:56

On the last day I took a bag of M&S goodies in as a thank you too the fantastic staff. They let my wife into the treatment room to see the set up procedure then allowed her to stay in the control room and watch the rest of the procedure. My last appointment was the last one of the day, the only person near the bell was the receptionist, he did stand up and clap. Like many have mentioned before you may miss all the people you have met on a daily basis for several weeks.

Best wishes Chris

User

Posted 21 Oct 2018 at 19:04

Hiya Pete,

I've been following your story with interest as I had a recurrence after prostatectomy followed by SRT. Just want to say what a good day tomorrow will be for you....ringing that bell. It sounds like you like a glass or two of red wine so I think I know what you'll be doing tomorrow night ! All the best for the future mate.

Paul.

User

Posted 21 Oct 2018 at 21:17

@Chris

I'll be there on my tod as my wife has to work sadly but I will ring that bell with gusto. I'll br hamding over a card and a huge tub of Celebrations with my thanks. I did talk to some lovely people there but the schedules were all over the shop so I never got to know anyone really well.

@Bestie

Yea, ringing that bell will be a relief and I will feel lost for a few days. Thanks for the kind words. I have a bottle of sulphur free red (I have an annoying vascular reaction to normal red) sitting there waiting for me. My fingers are cross for the future! How is your follow on from treatment doing?

User

Posted 21 Oct 2018 at 22:04

John took in a big basket of fruit on his last day but sadly, Jimmy’s doesn’t have a bell 😢

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 Oct 2018 at 23:11

Pete,

Luckily my post SRT recovery has been quite symptom free except for a few strange spasms in my perineum and occasional mucosal discharge. I have my 6 month follow up consultation in three weeks time and I have to say I can feel the tension rising, particularly as the original appointment was cancelled last week. Overall though,I convince myself to stay relatively positive. I have changed my diet to bring a proactive aspect to the situation which may have little or no effect to the outcome, but I don't find it a hardship to maintain, in fact it has made my meals far more varied and interesting. We all do what we can in our own way.

Cheers, Paul.

User

Posted 21 Oct 2018 at 23:21

All the best for tomorrow. I had mixed feelings on the last day as I was so looking forward to not having to make the journey every day but knew I would miss the laughs that we had.

I am still in touch with some of the guys I met during the SRT and it's great to keep up with their progress. I hope that the treatment works for you.

Enjoy the wine!!

Kevan

User

Posted 22 Oct 2018 at 16:28

Correction: when J had his RT in 2012 they didn't have a bell - I shall ask him whether he wants to pop down and ring it now! 😁

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Oct 2018 at 18:39

Hi all

Just letting you know I had my final treatment, left my goodies and card and rang the bell! It was a lot louder than I expected!

It has been a long 7 weeks and in many ways I feel humbled by the hard work and kindness of the Radiologists, the positive attitudes of the patients (many of whom are far worse off than me) and the support from this forum. Thank you all for the kind words and the occasional kick up the bum!

My goal now is to work on my positive mindset and my fitness and general health. The rest is in the lap of (the) God(s) (covering all bases there!)

@Bestie - that is all we can do. Cross fingers for you.

@Kevan - yes, I had mixed feelings to. Feel a little lost now but a couple of glasses of wine will do.

@Lynn - if the bell had not been installed, you could have had so much fun persuading your husband to buy a town crier's bell and run unannounced into the middle of the treatment room and start ringing it like mad!

@Mr Angry - you are channeling your inner Leslie Philips there!

User

Posted 22 Oct 2018 at 18:57

Nice one Pete!

All the best for the future!

Best Wishes

Luther

User

Posted 23 Oct 2018 at 07:49

Great that the treatment is now done. You can move on with your life again.

Enjoy it.

Ido4

User

Posted 26 Oct 2018 at 10:02

Cheers Ian

Quick question all - yesterday and to a lesser extent today felt / feel really low - kind of deeply numb rather than upset or anything. Is that common after finishing RT?

User

Posted 26 Oct 2018 at 10:20

It is a known phenomenon in cancer patients - Macmillan has a leaflet about it that you can probably download. I think the theory is that while you are having active treatment the adrenaline takes over but once the RT finishes and the adrenaline falls, you are left with a sort of grieving void of “what do I do now?”

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Oct 2018 at 13:24

I did feel a abit down for a couple of weeks post SRT, and so did a few of the other men having treatment around the same time as me (I subsequently saw them months after our treatment ended) Some agreed that it was the time spent in a positive environment whilst receiving radiotherapy,from excellent staff and fellow PCa, and other cancer patients and their families. Also life gets back to 'normal' which is,after all, what we want but nevertheless feels strange. You'll probably feel better and less numb after you've adjusted Pete.

All the best,Paul

User

Posted 26 Oct 2018 at 15:35

It is normal to feel like that. I attended a Maggie’s course every Friday for six weeks straight after radiotherapy. The clinical psychologist on the course team said that when treatment finishes it is almost like bereavement. You go from daily attendance to a clinic where you get lots of attention, where you feel like your doing something to kick the cancer’s ass, and you feel part of something. You also meet others in your situation. I got to know a good few people in the waiting room and we looked out for each other, chatted, joked, compared experiences. When treatment stops you are no longer doing these things, even although the radiation is working long after the last session.

So you feel kind of empty and abandoned.

All normal feelings apparently. You are doing all the right things, you’ve had all the treatment you can at this point, you’re exercising, eating well and enjoying life.

Acknowledge the feeling and then move on!

Best wishes,

Ian

Ido4

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Post RP and SRT journey - July 3023 PSA test update

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