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Greg Bilson

PSA since last Zoladex in Aug 2013 was .04 and since then has slowly crept up to .69 in April 2016 without any treatment. Doc wants me to have PSMA test to determine if and where cancer could be. Test is expensive but because of my military service should be covered by DVA.

 

Is this the path I should be taking?

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Kezza2

I thoroughly recommend you have the PSMA PET scan.  Had they been available some years ago, it would have identified the tumor in my lymph gland in my pelvis prior to it spreading to other lymphs and bones, and it could have been treated rather than simply slowing its growth with ADT.  As it is now, I have several lymph and bone mets, which we seem to be controlling with Abiteraterone, but who knows for how long.

 

Even if you have to pay the $600 for the scan, it is worth it and you will reap the benefits in the future.

 

Cheers

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Chalkie

Hi Greg 

I guess your doc wants to see if some radiation can be directed to the site of your Pca

If it is going to cost I would be asking what would show up when your PSA is as low as it is.

May be good for establishing a baseline.

 

I had a Pet Scan in 2005 - one of the first "F-Cholin" (or something like that) - when my post surgery PSA was 4.2

 

This did highlight 3 tumours in my abdomen - one about 5mm and the others somewhat smaller.  They (the team at Peter Mac Cancer Centre in Melbourne) said probably in lymph nodes and well away from where my prostate used to be.   At that time radiation was much more primitive that it is now. They added they would have to radiate an area 10 cm square and it would burn my stomach out.  Bad Luck   I understand that the more sophisticated stereotactic radiation can pinpoint and destroy tumours within 1mm of accuracy.   But I am not sure if this would have helped me anyway as they said there would be other tiny tumours not picked up by the Pet Scan.

 

10 years down the track and with the Zoladex running it race I had a free PSMA scan (PSA was about 12 - it had been 44) with the view to seeing if stereo tactic radiation could be used.  Unfortunately (although expected) there were too many tumours in bones to treat.  Interestingly though the lymph node tumours were no longer visible!  The radiologist did say that if a particular tumour started to give me some grief they may attack it individually.  The scan was dull - not like the bright colors that came up in 2005

 

We are all babe in this situation and have to be guided by the medico dealing 

 

I have am off to PMCC on Thursday to discuss the results of the bone scan, MRI and blood tests I had last week with the view to considering what options are available for me now that my PSA is rising as I am in the castration resistant stage - no physical symptoms yet.  

 

Chalkie

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Leabro

Hi Greg

Where are you located?

Although only good for tumors >5mm approx. it is the best tool available at this time.

Total cost with CT scan included is $1200 and no rebate from Medicare or health fund on the pet scan part yet so expensive but as I said the best available at this time.

I have had two scans in the last two years and going for my third in a few weeks at Wesley, Brisbane. Last one showed an inconclusive shadow on the right illiac (pelvic area) lymph node back in January.

I too am now 0.66 psa.

Good luck and stay well.

Cheers Leabro

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Geoff H

Hi Greg

 

I had 3 Ga68 PSMA PET scans at St Vincents Hospital here in Sydney last year.

 

At no stage has my PSA been higher than 0.47, yet the scans were clearly able to show PCa.

 

The scans helped my Rad Onc target the RT, especially the last lot in February this year where the affected right Obturator nodes were targeted with escalated dosage.

 

I had to pay $750 each time, but consider it money well spent.

 

Geoff

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DavidAbrahams

Hi Greg,

Definitely go ahead and get one done ASAP.

 

Where are you located. I had a PSMA late last year at the Princess Alexander Hospital in Brisbane with a referral from my Oncologist at the Toowoomba General Hospital. The Service fee in total was bulk billed. ie no cost. If possible shop around.

The scan picked up 5 lymph nodes and increased activity in my sacrum and L3. The radio therapy that I had on the sacrum and L3 was a waste of time but that is another story.

You can give me a buzz if you want see members list.

Good luck

David

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Guihan

Hi Greg. I don’t post very much to this forum because it always seems that most other members are having a much tougher time than I am. I am responding to your latest posting because I see your case as being closest to my own, and we share an interest in where we go from here.

First, a recap on my situation. First symptoms  (urinary incontinence) 2001 at age 64. GP said “benign enlargement”, and no action taken. In 2003, routine blood test (including PSA) showed PSA “a bit high” (don’t remember the reading). A follow-up PSA test three months later revealed “PSA rate a bit high”, so off to a urologist to see if there was a problem.

Biopsy confirmed PCa, and an open radical prostatectomy was carried out in December, 2003. “Gleason 6 with extension”.  Surgeon reckoned he “got it all”.

PSA bobbled along at 0.1 until Aug 2004, and remained at that level until Feb 2005, when it went DOWN  to 0.1. Urologist admitted he had no idea what was going on, but level remained at 0.1 until Aug 2006, when it hit 0.2 again. By Feb 2007, it was 0.3, 0.4 in May 2007, 0.8 in Sep 2007 and 0.8 later in Sep 2007. Urologist was still mystified, but concluded that “It must have gone metastatic”.

I had one three-monthly Zoladex implant in Sep 2007 and a second when my PSA had fallen to 0.1 in Dec 2007. The specialist decided we should wat to see what happened next., before continuing with the Zoladex.

By Jan 2008, the PSA had fallen to 0.02, then in Mar 2008 it was <0.01. It remained at that level until Sep 2008, when it rose to 0.06. By Oct 2008, it was 0.09, and in Dec 2008 it hit 0.17. Thereafter, the policy was to wait until there was clear evidence that the PSA was soaring before hitting it with two Zoladex implants, delivered three months apart.

By now, I was doing my own mathematical analysis of my cancer doubling times and the Zoladex halving times. I consulted an oncologist who agreed with my treatment management being taken over by my GP and myself. I had calculated that I could prevent my PSA level ever getting to a measurable level by switching my Zoladex regimen to one implant every six months. Although my PSA levels were now below the recordable level, I was able to use my graphs on my calculated PSA levels to predict with some confidence the dates when the PSA would reach a recordable level. I have no wish to wait for that breakout, as I am reliably informed that metastasis only occurs whilst the cancer is growing. My graphs are telling me not to give it that chance!

The advantage of my revised treatment cycle is that my PSA has remained under the 0.01 recordable level (which I call the “breakout” level) since 2011. My calculations tell me that, if I had no more Zoladex implants (I have had 18 so far) the breakout level would not occur for another four years. However, because I can’t measure my PSA any more, I can’t prove my predictions are correct. I wish I had some other way to measure what is going on.

I have also learnt that, in some cases, Zoladex has actually been shown to have cured the disease. What if my disease has been eliminated by Zoladex? Sure, an expensive scan would provide the answer, but I am a pensioner. On the other hand, I am aged 79 now, but in good health. If I were to live until I am 90, and continued having two Zoladex implants per year, that is going to cost the taxpayer over $20,000 for those Zoladex prescriptions.

Greg, my recommendation is that you have that scan and keep yourself as informed as possible about what you are dealing with.

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DavidS

Hi Greg

There is certainly value in having it done. Like David Abrahams, I had one done at the Princess Alexandra Hospital late last year but with the referral coming from my private urologist as my Haematologist at the PA was unsure whether or not she could refer me (likewise for my radiation oncologist) as they have been caring for my lymphoma at the PA and don't like crossing boundaries. Likewise for me, it was bulk billed at no cost.

My scan picked up increased activity in quite a number of places and also came with a recommendation for me to have a bone density scan. This was then organised by my urologist and came back showing I have a crush fracture of T8 and also that I am in the high risk category for further fractures hence my now being put on Fossamax and vitamin D supplements. My last PSA end of January was 4.7. I am currently on Zoladex as it has been found to be the most effective treatment with Androcur and Cosudex having limited effect. My PSA has fluctuated since first being treated back in 2005 with the prostate gone in 2008, it still spiralled upwards until the aforementioned treatments started to bring it down.

David

 

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Barree

Hi Greg,

I have been a PCa survivor for 16+ years.

Like most of the others that have replied, I suggest you have a PSMA PET Scan as soon as you can.

Surely, the most important thing at this point in time is for your Oncologist to accurately ascertain the extent of your Prostate Cancer and to determine precisely where it is located.

The most accurate way of determining this is a Gallium 68 PSMA Pet Scan - Currently this is considered to be one of the best ways available for your Oncologist to determine what is going to be the best and most appropriate type of treatment for you based on the findings of the Scan..

 

We recently had a video link on out site to a Dr Woo describing the the benefits of this type of scan. Its worth a look.

 

Once you have this information perhaps you could use this forum to inquire what forms of treatment you should investigate before you decide on treatment

 

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Geoff Buttfield

Greg

Like everyone else, I recommend- DO IT!  BUT, I am not a Doctor!

Unfortunately, what happens after that seems to depend on where in Australia you are, and how enlightened your Radiation Oncologist is (and also if you are prepared to put your hand in your pocket, unfortunately.)

A Ga68 PSMA Pet/Ct will set you back $600 (pens.)- $800 in Melbourne, with absolutely NO claimback from Medicare (indeed, it does not even count towards the safety net.)

After that, your Rad. Onc. may be able to hit the active spots with Stereotactic Treatment, depending on where they are, and how many, and if you so choose.

If you decide to proceed, treatment costs will all count towards the safety net, with total out of pocket expenses (2 spots) recently estimated (28/4/16) at max.$1,314.66 (pens.) or $2,420.34 (non pens.) after safety net, dependent on if you already have some safety net eligible spending, or not.

Of course, your DVA entitlement may change this.

I note that these figures are for a large, privately run, Radiation Therapy Consultation and Treatment Service, and again your DVA entitlement may open doors in the public system.

I commence treatment next Monday! (9/5/16):)

Geoff

[Edit - You will see that Geoff from Toowoomba in Qld has had to go to Melbourne to get a Rad Onc who will give him stereotactic radiation!]

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