Choosing Right RT

Hi T. 

I was 60 when dignosed in 2013 and went on active surveillance for 4 years 

If I was your dad's age I would be jumping at the chance of AS and his PSA has come down.

Gleeson is lowish as well and as long as the MRI is not showing tumour about to break out from the gland then  monitoring the PSA and yearly MRI should be fine.

If he does decide to go for treatment the spacer gel isn't available at all hospitals so u would have to check.

Cyber knife is another option but not sure available on NHS and also unsure about long term stats 

Fiducial markers r normally used at most hospitals but not all so u would have to check.

See what others say 

Best wishes

Steve

Thank you, Steve!

The tumor is in the right lobe, apex. A doctor’s drawing shows it close to the edge, but don’t know how close, need to ask more questions about ‘escaping’!

Hope you are well and thanks for sharing your thoughts- most helpful!

TI

Think u said the second opinion suggested AS, presumably he wouldn't have suggested  it if he thought too near the edge ie about to break out.  

Yes, obviously needs to be checked out.

Steve

Yes, the second opinion did suggest AS, the consultant was quite philosophical and said this is what he would advise his dad in similar situation.

I am confused because the first suggested RT, based on what I was wondering. I wasn’t there and even if I was, I wouldn’t have idea what to ask then.

Thanks, Steve, will be asking more questions.

Hi again Steve!

We talked to the radio oncologist yesterday.

He was offered RT  because of the gleason score 4+3 which puts him in the upper tier of moderate aggressiveness.

The nodule is not nearing breaking out. The  rise of PSA which triggered the initial investigation he believes wasn’t the cancer itself, but something else, hence the lowered last reading…Also said the next 5 years 25% chance of growing/ spreading.

His argument was cure it now, since this is his only serious medical issue and the side effects were mainly wind.

I wanted to ask, during your AS, did you measure PSA density and velocity as well?

Did you have MRI scans early and how often biopsies?

What was the cutting point before treatment for you and what did you have?

How are you feeling now?

Sorry about bombarding you with so many questions:( I am scared the RT may do more harm than good, and equally terrified of getting too late for treatment.

thank you!

tina

Hi Tina

I had PSA test every 3 months and MRI yearly. Just normal PSa.

I only had 1 biopsy because they were pushing me to have a template biopsy which I wasn't prepared to have

I only went for treatment when I discovered that the tumour was near the capsule edge, I often asked if they could show me the tumour on the MRI but was on deaf ears.

Your OH could leave it for a while and see how it goes but if concerned perhaps go ahead with the treatment. It is more difficult because u have 2 specialists saying different things.

Can't remember if your OH has pre existing bowel/urinary issues, if not he should be fine

Five years after treatment I am OK PSa still going down albeit more slowly. But most importantly no side effects and no ED issues.

Hope this help, any more questions please ask

Best wishes

Steve

Thanks Steve!

you are right- both specialists are quite passionate about their recommendations, which is not helpful for us to decide. I go to bed with let’s wait and wake up with what if it’s actually bigger and more dangerous etc.

My dad has constipation and no bladder issues. it’s up to how lucky you are in the end re side effects:(

Good to hear that 5 years on no side effects for you!

After the RT my dad is wondering if he would be well enough to to work in his garden. How long did it take you to recover? 

Dont know how I forgot this but when I look back I was in the same position as your dad

Hospital wanted to start treatment and second opinion (private hospital) said that AS was ok looking at the results then ,I think PSA was a bout 7 at that point

So as I wasn't particularly happy with the first hospital I went with the second opinion.

In the end , approx 2 yrs later, I had to go ahead with treatment, at a different NHS hospital to the first.

Just one other point, I have read of people on here, not many, who have been on AS for many years, many more than my 4 years.

So I suppose some times it can be worth hanging on but obviously monitor PSa and MRI

Good luck 

Steve

Hi Steve!

Exactly the same- the hospital adamant about the RT and the private consultant insists on AS.

My dad is thinking that in a couple of years time he will be older and everything more difficult in terms of recovery and side effects.

The near future plan is to check the PSA regularly and MRI.

Thanks for your support!

Tina

Just one other thing, if they had given me details that the tumour was near the capsule edge and shown me the MRI to that effect I probably would have started treatment earlier. Not sure why they couldn't tell me that.

So monitoring is the most important thing, your good point about your dad being more affected by treatment in years to come.

Steve