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Constant delays and frustration

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User
Posted 11 Apr 2019 at 13:26

Where do I start, both husband and dad have this, and was diagnosed a couple of weeks apart.  Hubby sorted (had to have it out) but dad having radio.  He was diagnosed in June 2018 but here we are in April and he was supposed to have is 1st radio today, but I was cancelled due to his hip replacement.  I feel very frustrated, as all the mri scan and his medical records show hes had them replaced, so why did they even put him down this path.  I know there are other treatments, but surely this should have been dealt with beforehand!

 

User
Posted 11 Apr 2019 at 14:33

Your timeline is similar to mine. In my case, I've ended up having just about every diagnostic test there is because my PSA is high enough to strongly suggest spread, but they can't find any. However, some of the tests took months to arrange. I'm still at least a month or two away from RT.

Presumably your dad has been on hormone therapy (HT) all that time? This is normally used before RT because it improves the chance of the RT catching all the cancer cells. The HT drives his PSA down, and the lower it is at the start or RT, the better the outcomes, so don't think of it as wasted time.

One thing I would get checked over this period is that his PSA has gone down significantly.

What was is PSA at diagnosis, and what is it in the most recent test?
If you haven't had a recent PSA test, ask for one.

User
Posted 11 Apr 2019 at 17:56

On the hip replacement, a bit of googling suggests it doesn't prevent having RT, but it might require different pre-treatment imaging to plan the dose (e.g. MRI scan rather than CT scan), and it does require a different plan for the X-ray beam positioning to avoid going through the artificial hips, as the artificial hips scatter the X-rays and the prostate would not receive the X-ray dose planned.

So it may be that the info on your dad's replacement hips didn't make it to the medical physicist and radiologist, and they will need to re-plan the way the RT X-ray dose is delivered.

User
Posted 11 Apr 2019 at 17:59
Was today supposed to be the first RT session or was it the planning appointment? If today was supposed to be day 1, when was his planning / tattooing appointment?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Apr 2019 at 18:24
The timeline in itself doesn't seem all that unusual. With RT it's normal to have 6 months of HT prior to the RT, meaning that the RT doesn't start for 9 months or so after diagnosis. I completely understand the frustration about the RT problem, though. Clearly miscommunication somewhere along the line.

Hope he's able to get it rearranged shortly.

Chris

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User
Posted 11 Apr 2019 at 14:33

Your timeline is similar to mine. In my case, I've ended up having just about every diagnostic test there is because my PSA is high enough to strongly suggest spread, but they can't find any. However, some of the tests took months to arrange. I'm still at least a month or two away from RT.

Presumably your dad has been on hormone therapy (HT) all that time? This is normally used before RT because it improves the chance of the RT catching all the cancer cells. The HT drives his PSA down, and the lower it is at the start or RT, the better the outcomes, so don't think of it as wasted time.

One thing I would get checked over this period is that his PSA has gone down significantly.

What was is PSA at diagnosis, and what is it in the most recent test?
If you haven't had a recent PSA test, ask for one.

User
Posted 11 Apr 2019 at 17:56

On the hip replacement, a bit of googling suggests it doesn't prevent having RT, but it might require different pre-treatment imaging to plan the dose (e.g. MRI scan rather than CT scan), and it does require a different plan for the X-ray beam positioning to avoid going through the artificial hips, as the artificial hips scatter the X-rays and the prostate would not receive the X-ray dose planned.

So it may be that the info on your dad's replacement hips didn't make it to the medical physicist and radiologist, and they will need to re-plan the way the RT X-ray dose is delivered.

User
Posted 11 Apr 2019 at 17:59
Was today supposed to be the first RT session or was it the planning appointment? If today was supposed to be day 1, when was his planning / tattooing appointment?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Apr 2019 at 18:24
The timeline in itself doesn't seem all that unusual. With RT it's normal to have 6 months of HT prior to the RT, meaning that the RT doesn't start for 9 months or so after diagnosis. I completely understand the frustration about the RT problem, though. Clearly miscommunication somewhere along the line.

Hope he's able to get it rearranged shortly.

Chris

User
Posted 13 Apr 2019 at 12:27

Hi he's had his tattoo appointment, so was all ready for the RT.  He has been having his hormone therapy, so thats good.  They have slotted him in on Monday morning to see the oncologist.  fingers crossed for some good news 

 

 
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