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Posted 5/24/2015 10:42 AM (GMT 0)
Hi All,

I'm new to this forum and as set out in my signature, had RALP surgery in April 2013 which in most respects has gone well - except for having a persistent PSA.

The behavior of the PSA hopefully means that it is benign tissue or maybe an indolent cancer, so I continue on with 3 monthly tests.

For a while now, I've followed the forum and learned a lot from the posts. It's been a big help along the way in dealing with the whole prostate cancer issue.

Thanks to everyone and I hope I can make a contribution.

Steve
Posted 5/24/2015 10:56 AM (GMT 0)
Hi Steve,
I will leave it to others with more knowledge than me to comment, but it is good to see another New South Welshman on the forum. ( go the blues!)
Where did you have your surgery and what part of the state do you live?
Does anyone know if a study of what country members of the forum reside. I have always wondered how many Australians are members of this forum.
Cheers
Greg
Posted 5/24/2015 11:22 AM (GMT 0)
Hi Greg,
I'm from Sydney and surgery was at Westmead Private. It went smoothly.
Hope you're doing well - I'd read some of your posts.
Steve
Posted 5/24/2015 11:33 AM (GMT 0)
Hi Steve, Welcome to HW forum
Sharing my PCA treatment road...on my signature.
Posted 5/24/2015 11:40 AM (GMT 0)
Thanks yk
Posted 5/24/2015 8:04 PM (GMT 0)
A PSA of 0.15 ng/ml is not likely just from benign tissue, and GS 4+5 has a way of getting loose and not remaining indolent. You want to stop it, if it's not too late already, before it gets systemic and your PSA takes off. Talk to a radiation oncologist.

- Allen
Posted 5/25/2015 12:20 AM (GMT 0)
Hi Allen,
Thanks for your reply, I hear what you're saying and radiation is on the table.
When the post surgery PSA came back as detectable it was decided to monitor it and see if there was movement upwards.
It was stable for a year, went up to .15 and has been stable since. Dr Myers had a video on the subject and I'd also read various papers on the topic - but I'm no expert.
All input on this is gratefully welcomed.
Steve
Posted 5/25/2015 12:20 PM (GMT 0)
Paul and I live in NSW too! Welcome.

Allen is right, your PSA reading is detectable and Gleason 9 cancer needs attention. You may need to move on this, simply because if there is a chance for a cure you may only have a small window of opportunity.

An
Posted 5/26/2015 4:19 AM (GMT 0)
Thanks An, there are a few of us here now!
I'm not trying to be an advocate for anything here, just explaining my journey so far. My Dr is a highly credentialed urological cancer surgeon and I was referred to him by the urologist who performed the original biopsy. I have had appointments every 3 months (after each test) to discuss the behavior of the PSA, always with the knowledge that we may proceed to RT. I know that there is strong support for adjuvant radiation in this situation. From the beginning I've spent time reading on the issue and also found these 2 videos https://askdrmyers.wordpress.com/2012/12/19/when-recurrent-pca-isnt-cancer/ & https://askdrmyers.wordpress.com/2011/01/26/recurrent-prostate-cancer/.
Like I said before, I'm grateful for all comments and will take them on board.
Steve
Posted 5/26/2015 4:46 AM (GMT 0)
Steve,
I didn't listen and they may be very good, but I'd advise you to pay attention to the dates. I notice the video clips you cite are from 2011 and 2012, and may be woefully outdated. While videos are really a poor source of information, even studies in peer-reviewed journals from years ago may be superseded by better quality evidence. It is very tempting to look for evidence, even of low quality, to confirm our biases, but denial can be a dangerous thing.
- Allen
Posted 5/26/2015 5:59 AM (GMT 0)
Steve,

What did you think of last nights Lateline on ABC (I'm in Melbourne). www.abc.net.au/lateline/content/2015/s4242278.htm

The Radio Oncologist Assoc Prof is at Westmead.

All the best from a fellow G9'ner!
.
Posted 5/26/2015 11:08 PM (GMT 0)
Allen,
No denial here, for me it's been plan for the worst and hope for the best. The last thing I would do is try to cherry-pick information. From what I have read, one school of thought is that you look at the pathology and PSA doubling time to decide whether to proceed to RT (which does have it's side effects) and the other is that it's not worth the risk and adjuvant RT is appropriate. I think the videos are worth a listen.
Steve

PSA3DOT7,
Thanks for the link and the welcome, I didn't see the show but I read the transcript. Those were the sort of dollars I ended up paying for the robotic surgery. The options of surgery and RT were explained to me and I opted for surgery without doing a cost comparison. We had a Radio Oncologist at our support group who gave a presentation on IMRT which was very informative and explained the preparation of the plan for the treatment.
Steve
Posted 5/27/2015 3:33 AM (GMT 0)

PSA3DOT7 said...
Steve,

What did you think of last nights Lateline on ABC (I'm in Melbourne). www.abc.net.au/lateline/content/2015/s4242278.htm

The Radio Oncologist Assoc Prof is at Westmead.
.

I watched Lateline and I think the point that RT Oncologist, Prof Sandra Turner, made about Uro surgeons acting as gatekeepers and providing the first line of treatment without reference to alternative treatment like radiotherapy is absolutely correct.

When I was diagnosed by my Urologist, there was never any mention of alternatives. It was made very clear that I had to have surgery, and with my biopsy of G9, he told me I would need adj RT. I was even measured up for that prior to my surgery, but at no time was it suggested that I could have RT instead of surgery.

Regrettably I wasn't well enough informed to ask the question.

Wish I had found this forum before then. Not that I would neccessarily have chosen that option, but wish I had known it was something to consider.

Chas
Posted 5/27/2015 5:51 AM (GMT 0)
Saw Lateline too!
In my case at diagnosis, surgery was advised the best course for younger fit guys...even by my second opinion urologist! SRT as a backup was also sighted, which I've just completed.

I guess what I got from Lateline was upfront RT is considered just as good an outcome, and available free! That wasn't explained very well to me on diagnosis.
Like many men...I just wanted it gone, I had no prior knowledge of PCa.
Posted 5/27/2015 6:05 AM (GMT 0)
Hi all,
I missed Lateline. Do you know if there is a repeat, or available online somewhere? Would be interested to see it.
I too was basically told that because of my age and health, that surgery was the best option, although I did get a second opinion by email from Dr Phillip Stricker who did lay out a number of options, and I did a lot of research before going down the path of surgery, i was still really not convinced fully, but thought that in all probability it was still the best option for me.
I must admit, with my outcomes at this point, although at an early stage, I do feel like I did the right thing. What I did not realise at any time until the last week or so, is the cost difference between the various treatments.
Ah well, back to work soon to pay off the op before another couple of years to retirement.
Cheers
Greg
Posted 5/27/2015 7:05 AM (GMT 0)
Hi
Found the transcript of Lateline online. Very interesting. There is a capability to send Lateline an email message online with your thoughts or situation which I did tonight.
Cheers
Greg
Posted 5/27/2015 7:39 AM (GMT 0)
For those who missed it, Lateline for 25 May is available via ABC iView, but only for another week or so. I think they have the 10 most recent episodes available.

Suspect that might only apply to Aussie internet connections (or use a VPN).

Chas
Posted 5/27/2015 8:35 PM (GMT 0)
My Urologist said that I had the options of RRP by him, RT or he could refer me to another surgeon for RALP. He explained about each and didn't try to steer me in any direction, though when I opted for the RALP he said he thought it was the right decision. He gave me a book from the Prostate Cancer Foundation which set it all out in more detail.
Posted 5/27/2015 10:59 PM (GMT 0)
Steve,

Who was your surgeon?

Chas
Posted 5/28/2015 1:56 AM (GMT 0)
Hi Steve, welcome to the Forum, you will get a lot of info and help here, I am in Perth WA and have been a member here for just on 8 years.

Regards Mal.
Posted 5/28/2015 3:08 AM (GMT 0)
Hi Chas,
There seemed to be some disagreement with the course I've taken, so I'm a bit cautious on a public forum. Can you drop me an e-mail.
Steve

Hi Mal,
Thanks for the welcome, I never realised there were so many of us on here!
Steve
Posted 5/28/2015 10:27 AM (GMT 0)

SteveNSW said...

There seemed to be some disagreement with the course I've taken, so I'm a bit cautious on a public forum. Can you drop me an e-mail.


Steve, As I look at your data, your initial choice to have surgery based on G 3+4 biopsy is a totally understandable decision. The question raised by Allan is about your persistent PSA post surgery. Mr. Tall Allan has the time and inclination to stay current on the research, and is really good at summarizing the state of affairs for all of us.

If it were me, I'd probably be planning radiation now instead of later, because at your stable but elevated PSA, it's probably still localized. When it takes off, it's likely that it won't be localized, and RT won't have as good a chance at nailing it.

On the other hand, if you're OK with your treatment team, and you're consulted with a RO (radiation oncologist), and he's ok with your plan, then go for it. A common statement in here is always to remember that surgeons know about surgery and ROs know about radiation, and they know relatively little about the other specialty. So, when a surgeon recommends against radiation, questioning it is ok.

Posted 5/28/2015 1:41 PM (GMT 0)
Halbert, Thanks for your reply, I appreciate your comments and Mr. Tall Allan's. My response to Chase was just that I'd prefer to let him know my surgeons name privately.

There hasn't been any comment yet on the content of the video links I posted - It would be interesting to hear back on that.
Posted 5/28/2015 2:16 PM (GMT 0)
Steve, I watched the first video, about whether stable post surgery PSA means recurrent cancer. I think it's a fair question to ask whether current thinking in 2015 validates Dr. Myer's point made in 2012. Doubling time is still the important question, to me at least.

When you couple that with the overtreatment situation, I'd probably be exactly where you are. Fact is even though you show a G9 on surgical pathology, you also showed no EPE or SVI. At that point, the G9 is almost...and I said almost..academic. Your doubling time is over 2 years. That's a great sign.
Posted 5/29/2015 10:37 AM (GMT 0)
Steve,

One of the things seldom mentioned, you may be eligible for a "payout" if you have "income protection" insurance (or part of your standard super) with a "trauma clause". A "cancer diagnosis" is classed as "trauma". So check your insurance you may be eligible!

.
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