Prostate Cancer Survivors






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Re: High PSA

I had a high PSA ( 50 ) when first diagnosed in Oct 2000 age 52 . I went for radiotherapy after about 18 months of hormone therapy which sent me into remision for 7 years - PSA around 0,5 - then unexpectedly started to go up again ( quickly ) early this year ; After a new biopsy showed cancer had returned to prostate I has Ablatherm ( HIFU) treatment in May 2008 . Since then my PSA is undetectable (>0.02) . So there is everything to hope for in your case too.
Both treatments were well tolerated . Radiotherapy gave me a burned behind but little else . No incontinence and pretty much full potency . Ablatherm caused some urinary problems now more or less resolved but only about 50% potency ( resolved by Levetra ) . If I had to do it again I would chose Ablatherm first with radiotherapy in reserve - Ablatherm wasn't offered as an alternative in 2000.
Evidently at your age sexual potency could be more of an issue in which case radiotherapy might be better.

Hope this helps or at least gives you a bit more optimism while considering your options.

I am thinking of posting my story in the survivors section so keep an eye out - I'll probably post it under ablatherm .

Best wishes Tony

Re: High PSA

G'day Paul,

You've got a complicated diagnosis - and therefore a much more complex decision to make. For what they are worth, here are my thoughts:

• I’d be surprised if the PSA level was linked to metastasis or spread. As you may know, PSA is not prostate cancer specific. Elevated PSA levels are due to reasons other than prostate cancer in the majority of cases. The fact that your PSA fell so sharply indicates the possibility that it is an infection that is pushing the number up.

• On the other hand, the fact that you had five positive samples (I assume they were all positive for adenocarcinoma?) may indicated a large volume of tumour. Do you know how much of the samples was positive – what percentage of the material in each positive needle? That might give you some further indication on the question of volume. One school of thought is that a tumour has to acquire a certain mass before it starts moving out of the gland (about 12 cc as I recall)

• Your Gleason Scores are not high – not in the aggressive definition yet, so that again seems to indicate an unlikelihood of spread

• Dr Stephen Strum, who wrote an excellent book, with prostate cancer activist Donna Pogliano, always suggests getting additional blood tests before making any final decision – they are described here . Most doctors will tell you that the PAP test in particular is outdated and of little use, but Strum is a well known oncologist and it has always seemed to me to be worth getting these other tests to see if they can shine a little more light on the issue.

• It seems to me that surgery may well be your best option right now. If the disease has in fact metastasised or had become systemic, radiation would not be of much help – you would need to treat the disease with some form of ADT (Androgen Deprivation Therapy). The only time that radiation would have the edge over surgery, in your particular case would be if there was a demonstration of the fact that the disease was still either contained in the gland, or still in the capsule – because those are the areas that would be radiated.

I hope this helps a little. As I am sure you will appreciate, I have no medical training and my views have been developed after reading a good deal of material over the past 12 years since my diagnosis.

All the best

Terry in Australia

Re: High PSA

Paul you are indeed in a difficult situation regarding your choice of treatment. Where it not for your PSA level, other indicators (Gleason, Staging, and your age) would be supportive of surgical intervention via RP. But the advice of your Doctors caution's against surgical intervention, due to your high PSA indicating the potential that your prostate cancer may have already spread outside the prostate. So you have a dilemma to deal with, and I guess that is measured by how much confidence you have in the doctors treating you.

By all means gather whatever information you feel maybe valuable is assisting you to make an informed choice on your chosen treatment. But try to be factual in your decision making process, based on the evidence that is, rather than what you would like it to be.

Re: High PSA

Aloha Paul,
Just a minor point about EBRT/IMRT. I was on ADT beginning June 07, then radiation in Sept & Oct 07. All 12 biopsy samples were 5 to 70% PC, the Gleason was 9, the PSA went from 8 to 14 in 8 months. MRI, CAT, rad bone scan, all negative for pc outside prostate. The rad oncologist suggest/felt strongly that the pc was probably out of the prostate, but was not detectable. So, I agreed to the pelvic cavity radiation for the first half of 39 days, then ultra-sound guided radiation of the prostate for the remaining days. I chose this method because even after surgery I would have needed(?) pelvic cavity radiation.
So, what about you. Any decision you make must be between you, your partner, & your doctor that will administer the treatment. The point here is that the web will not treat you. The web can help you understand what is happening and what MAY happen after treatment.
I found somewhat helpful, "Report to the Nation on Prostate Cancer, a Guide for Men and Their Families" published by the Prostate Cancer Foundation. It is a big document. The best part is the list of questions that you should ask your doctor, and demand answers. Unfortunately, I did not know about until several months after my treatment.
I would also suggest that you talk to someone in Behavioral Health Services. How you chose to deal with pc can be difficult for your brain and your personal relationships.
Have faith & hope, & know that we are all thinking about you, and we are interested in how you make it through this difficult time.

Re: High PSA

Paul ... similar situation here.

PSA on routine blood testing 65. PSA bounced around between 45 and 65 for five years with no symptoms, including normal DRE.

Yes, five years ... I was in denial and afraid of having the biopsy performed. Yeah, silly but true.

PSA jumped to 115 in 2007. Family/friends persuaded me to have the biopsy. It was positive.

Started hormone therapy to reduce the prostate size and lower the testosterone.

Had every scan known to mankind over the next several months ... all were negative for metastasis.

10/07 had radiation seed implant followed by external beam radiation in 12/07 & 01/08.

PSA in 7/08 was 3.

Now, a year after the radiation treatments ... still on FLOMAX with some burning on urination but those symptoms have improved greatly and some, very little improvement in ED. Feel like I'm doing fine.

Good luck in whatever you decide.

Re: Re: High PSA


Thanks for that story, very inspiring.

The Stranger

Re: Re: High PSA

Hi Phred:
Thanks for your reply, it's realy a very similar situation, except I'm trying to deal with it right now, at an early (?) stage. I hope it will make some difference. Allow me to ask a few more questions about your biopsy. What was your Gleason Score ? How many positive samples ? Why haven't you considered surgery ? I'm deeply grateful to you and others who are helping with their experiences.

Re: High PSA

Hi Paul,

I too had a high PSA - 182, back in 2005, but MRIs found that bones and lymph nodes were clear.

Now, this is purely my own personal opinion, but I am glad that surgery wasn't an option in my case.

Like others here, I had hormone therapy and radiotherapy, and have come through it all unbelievably well.
I have had no cancer meds at all for 15 months now yet my PSA is stable at around the 1.0 level.

It's been a long journey and I did suffer the usual side effects of treatment, but they have now all disappeared.
The full history is on here on the Mentors pages at:

Whatever decision you make, may I wish you the very best of luck and full recovery.



Re: Re: High PSA

Hi George, thanks for your attention. I read your story, and noticed that you chose hormone therapy right from the beginning. Why was that ? Why have you rejected surgery ? Was it just based on your high PSA ? I'm very concerned on making such serious decision only based in an inaccurate blood test !!!

Re: High PSA

Thanx Stranger ... but I do realize that just because I feel like I'm doing fine right now, this ain't over and these fingers will remain crossed for a very, very long time.

Re: Re: High PSA


Absolutely and mine will be crossed for you as well.

The Stranger

Re: High PSA

I'm sure you have heard it said, but each prostate cancer has a unique set of circumstances. What worked for one person may not for another. There are nomograms online that can help determining if it has escaped the prostate. They told me mine hadn't, but all the nomograms said it had. It had. I had a low PSA, but a Gleason score of 9 (5+4). Not many options. I went with LRP. Now I'm on Hormonal therapy.

good luck,


Re: High PSA

Mark ... I absolutely agree and in no way meant to suggest that my choice of treatment was the one for Paul or anyone else. I was merely addressing his request for "similar experiences".

I still don't know if I made the right decision. Unfortunately I had already made the decision prior to joining this forum.

My Urologist and Oncologist were heavily pushing radiation treatment as the likely choice for me and I found no dissent from second and even third opinions so I went with it.

As many of us on here already know and folks like Paul are soon to discover, after the shock of hearing the "C" word we enter the very strange world of "decision making".

The options are seemingly endless and, yes, there are those that have agendas to promote in our decisions. They'll throw facts and figures at us that, quite frankly, we don't understand and promise this or that in side effects and treatment results which may or may not be reliable.

The bottom line is that we must trust someone we feel that has the knowledge to point us in the right direction and that's tuff to do in a life/death situation.

I trust the folks on here and wish I had found this place before making my decision.

Good luck to you Mark and feel free to join us in the "finger crossing" (grin).