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Hello all, please help!

User
Posted 27 December 2017 12:42:46(UTC)
Hello to anyone who reads this.

First of all, I came on here a while ago to ask some questions as my dad was diagnosed with advanced prostate cancer.

My dad had a radical prostatectomy in February 2017, after he had it removed his histology confirmed it was Infact a stage 4 and had breached, the surgeon had to cut away alot of fatty tissue aswel as slice away some of my dad's bladder as it had attached onto it, he was given the news that he will never be in remission.

Since then my dad has been very Well, active and genuinely enjoying life. Having 3 monthly PSA check ups, but with each blood test his PSA has been rising. With these results he was back in at the hospital seeing his surgeon again, obviously this is due to the fact his PSA is rising but he should not have a PSA at all really as he no longer has his prostate.

My parents were informed that my dad is now going to have radiation treatment.

Now I've explained what's been going on I'd like to ask a few questions and any advice or answers would be insanely appreciated.

So, first off.

What is the outcome with radiation?
Does my dad have a time limit?
What are the side effects from radiation?
What happens if it doesn't work?

And what are some informative questions to ask his oncologist?

As you can imagine my family have been looking on the internet and if it's not doctors gargon then it's contradicting where itl say one thing but he next website says another. And I know my family can ask the oncologist when they see him but some things just can't wait. But we would like to go in prepared with some questions to ask him.

As I said, any help or advice would be appreciated!

Please help us. Thank you.
User
Posted 27 December 2017 15:28:18(UTC)

Hello Jaderawr, If you read my profile you will see that I had a radical prostatectomy July 2015, histology showed the cancer had breached the capsule and there was evidence of intraductal cancer in addition to the "normal adenocarcinoma.

I started HT last December and had salvage radiotherapy March/April this year.

My PSA went from undetectable to 0.7 from 1/6/16 to 30/11/16.

You are correct in saying your dad shouldn't have a PSA reading as he has no prostate to produce it so any rise in PSA will be down to cancer.

Key questions are:

1. What is his PSA now?

2. What is his PSA doubling time?

3. What was his lowest PSA figure after surgery?

4. Will any salvage radiotherapy be aimed at the prostate bed only or further afield?

5. Will the oncologist conduct any scans prior to radiotherapy to better target it? (I had a Gadolinium enhanced pelvic MRI and then a Choline F18 PET scan).

6. Will the radiotherapy be a curative attempt and if so whet are the chances of success? I was quoted 40% success maximum)

7. What are the likely side effects from radiotherapy?

How much radiation will be delivered? (I had 55 Grays over 20 sessions)

Sorry there are a lot of questions there but they are important before making final informed decisions.

 

Best wishes, Ian.

 

User
Posted 27 December 2017 15:45:15(UTC)
Hi there
Although retired now as an ex LGV and PCV driver I immediately felt an affinity with Dad's position. I had surgery in 2015 but never achieved an undetectable PSA answer in 2016 had salvage RT because the PSA kept rising. It was explained to me that some cells were floating around somewhere in my body but they were unable to determine where. Because the PSA was rising relatively slowly they believed the cells were in the prostate bed and so could focus the RT in that area. This didn't work for me so in 2017 I started HT as this is more of a scatter gun approach and should work on the cells wherever they are. The good news is that 3 months after starting HT I had my first undetectable PSA reading.
Some onco's use HT and RT in close proximity as a belt and braces approach but mine had a good chat about it and we decided to try one at a time so that I only had one lot of side effects to deal with at a time. It might be worth discussing this.
The RT was not a major problem and I was happily able to drive the 94 mile round trip but went equipped with emergency supplies of pads, trousers, pants and wipes just in case as I had read that RT could cause bowel problems during treatment. I am pleased to say that I didn't need any of it and the radiology team were so helpful.
towards the end of the 33 sessions I was aware that I was getting a bit tired and I wasn't working full time so Dad needs to be mindful of this as in his job there is a lot of concentration required.
I had my LGV medical 3 weeks ago and have just had my licence back for another year as I still do casual driving on trucks and buses so all good.
The HT hasn't been a major problem but the hot flushes take a bit of getting used to.
Hope this helps a bit.
All the best

Kevan
User
Posted 27 December 2017 15:54:47(UTC)

I meant to also say that it s better to start the salvage radiotherapy when the PSA is low. Ideally below 0.5 but certainly before it reaches 2.

Evidence suggests that the treatment is effective for longer when started at lower PSA levels.

It might also be worth asking whether chemo would appropriate at this stage too.

User
Posted 27 December 2017 18:45:58(UTC)

I think if they have told you that dad will never be in remission, they will assume that you understood that his cancer is incurable. On that basis, I would ask the onco what the purpose is of the radiotherapy? Either the RT is being targeted at some spread to reduce the side effects or reduce the tumour size a bit OR there has been a bit of misunderstanding and there is still a chance of cure. You need to understand which so that the family does not have false hope or feel unnecessarily hopeless (depending on the answer the onco gives you)

Having no PSA because he has no prostate would only apply if he was in the curable camp - obviously since he is incurable, the cancer cells wherever they have spread will be producing PSA.

What happens next and how serious your dad's situation is is rather influenced by whether or not he is taking hormones already? If not, you could ask the onco whether hormone treatment is to be given with the radiotherapy.

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


User
Posted 27 December 2017 21:15:24(UTC)

Before starting a salvage radiotherapy it is better to clarify if the psa increase is caused by a local recurrence (e.g. in the bladder or urethra) or by a metastasis. If the psa is still low (below 1.0) and the doubling time is long, it is more likely a local recurrence.
In case of local recurrence high dosage of radiotherapy is required (at least 74 Gy/ 2Gy per fraction) in order to control it for long term.
Main side effects are frequent urination and defecation due to irritation of urethra/bladder/rectum.

Thanked 1 time
User
Posted 27 December 2017 23:22:20(UTC)

Hi Jade, I have just finished Radiotherapy, 20 sessions totalling 60 Gy.

Worst bits were travelling to and from treatment. You have to keep hydrated before  arriving, emptying bladder, then drinking 3 cups 1/2 hr before session to get fill bladder to the right amount.

You will be well briefed at the planning session

Your bowels needs to be empty, gas free, not always possible, but the radiologists are very understanding.

Radiotherapy has no feeling, just lie there keeping still, listening to the machine rotate around you bleeping,

RT can cause diarrhoea but speak to the nurses to gets some meds.

 

User
Posted 02 February 2018 13:55:17(UTC)
Thank you, this was all very helpful. My dad is awaiting an appointment for this month to get his 3rd result since I posted this. So soon as o have the results I am sure i will be on here to talk to you all again.

Thank you ever so much.
 
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