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Re: Don M.-Any Input???

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Hi DonSounds a bit like me. I was 7.2 pre-treatment and GS 7 (4+3). I had RPP and adjuvant RT but my PSA never dropped lower than 2.3. Bone scan was clear but PSA is now 10.3. No symptoms at all but I’m now on Casodex and starting Zoladex later this week. I too would love to know what’s going on.Bob

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DonM wrote:

> Hello Members,

>

> I selected proton radiation as my form of treatment and went to

> Loma University. I finished my treatment in 8/09 (45 of

> protons no photon). My lowest psa post treatment was 3.2 (was

> 8.6 pre treatment w/gs 7 4+3 in 1 core, others 3+3). After

> about a year post treatment my psa started to rise (4.3 then

> 5.2). My local urologist recommended another another biopsy

> which all 12 cores came back negative for signs of reocurrance

> cancer. My urolgoist then had me have a MRI (pelvic region)

> and a prostiscan (entire body) recently and they both came back

> negative of any signs of cancer. In a previous thread you

> mentioned asymptomatic prostitis. I mentioned this to my

> urologist and he finally put me on 2 weeks of cipro. Prior to

> the cipro my psa actually went down to 4.1. However, after my

> 2 weeks of cipro it went up to 4.5. My Urologist is now

> recommending I go to Seattle Cancer Alliance for there input

> since we can't figure out my psa situation. Seattle cancer

> alliance now has me scheduled for a bone scan and dexa scan

> before I see a Dr. Hogano (I guess she's a very well known

> oncologist). I'm now 45, physically fit and feel completely

> healthy. Other than stess :).

>

> Anyone have any input?

Don,

This sounds like one of those tough cases where nobody knows for

sure what is going on. I certainly don't know either and, as a

non-doctor, I am not qualified to give you any real advice.

Now, having said that, I'll proceed to give you my non-expert

thoughts on your situation.

You might still have cancer, but it also seems possible to my

non-expert eyes that you don't.

At this time, your PSA is not galloping off into truly

frightening territory. It has not reached a low value, but

neither has it run up into double digits or climbed back to where

it was before treatment.

My own treatment with HDR brachytherapy and external beam therapy

took four or five years (!) to reach a PSA nadir. During the

first two years it went up and down several times and didn't

begin a steady decline until year three. It was never as high as

yours. The highest it reached was 1.8. But your numbers are not

totally inconsistent with a PSA bouncing around.

If I were in your shoes I might be reluctant to start hormone

therapy without a clearly indication that I have recurrent

cancer. But I wouldn't rule it out either. I'd want to talk to

a real expert medical oncologist with a LOT of prostate cancer

experience and a high level of smarts. Hopefully Dr. Hogano will

be that person. If she doesn't strike you as really sharp and up

on the situation you might consider seeing one of the national

experts.

You might also want to get frequent PSA tests. When my PSA was

bouncing around my rad onc drew blood once a month to get a real

better idea of what was happening. If the PSA is bouncing

around, you might see that better with frequent tests than

infrequent ones where it might just happen that you hit two peaks

or two valleys in a row.

Here are some questions to add to your list for Dr. Hogano (in

the order I've thought of them, not the order of importance):

1. How frequently should PSA be tested? Why?

2. Is there anything short of ADT that should be tried before

ADT? Examples might be heavy doses of pomegranate juice, or

vitamins, or resveratrol, or changes in diet.

3. It is thought by many (maybe most) radiation oncologists that

neoadjuvant ADT improves radiation outcomes. Is there a

chance that it could help now? Or is it only possible that

it will temporarily hold any cancer in check and you will

become hormone refractory eventually.

4. What do the scans and blood tests show?

5. If ADT is not advisable now, what would make it advisable?

Is there a trigger PSA at which ADT becomes the right choice?

6. Should a light form of ADT (i.e., finasteride or dutasteride)

be tried?

Finally, you are very young to have this happen to you. I

understand how stressful this is. I was 57 when I was diagnosed

and I went through lots of sleepless nights before, during and

after treatment. This is probably occupying a lot of your waking

thoughts and some of your sleeping ones too.

The only advice I can give you about that is to hang in there.

Whatever happens, you're probably not going to die anytime soon

and there's a lot of life left to live. If worst comes to worst,

it would be a shame to spend all the time left in anxiety and

depression. Remember to do the things that you like to do.

Remember to care for the people that you care for. Don't give

over your whole life to cancer.

I wish you the best of luck.

Alan

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Alan,

Thank you for your input and encouragement. It really helped reading your

response to my post. I will definately print out and ask these questions for my

upcoming meeting.

Thanks again,

Don

>

> > Hello Members,

> >

> > I selected proton radiation as my form of treatment and went to

> > Loma University. I finished my treatment in 8/09 (45 of

> > protons no photon). My lowest psa post treatment was 3.2 (was

> > 8.6 pre treatment w/gs 7 4+3 in 1 core, others 3+3). After

> > about a year post treatment my psa started to rise (4.3 then

> > 5.2). My local urologist recommended another another biopsy

> > which all 12 cores came back negative for signs of reocurrance

> > cancer. My urolgoist then had me have a MRI (pelvic region)

> > and a prostiscan (entire body) recently and they both came back

> > negative of any signs of cancer. In a previous thread you

> > mentioned asymptomatic prostitis. I mentioned this to my

> > urologist and he finally put me on 2 weeks of cipro. Prior to

> > the cipro my psa actually went down to 4.1. However, after my

> > 2 weeks of cipro it went up to 4.5. My Urologist is now

> > recommending I go to Seattle Cancer Alliance for there input

> > since we can't figure out my psa situation. Seattle cancer

> > alliance now has me scheduled for a bone scan and dexa scan

> > before I see a Dr. Hogano (I guess she's a very well known

> > oncologist). I'm now 45, physically fit and feel completely

> > healthy. Other than stess :).

> >

> > Anyone have any input?

>

> Don,

>

> This sounds like one of those tough cases where nobody knows for

> sure what is going on. I certainly don't know either and, as a

> non-doctor, I am not qualified to give you any real advice.

>

> Now, having said that, I'll proceed to give you my non-expert

> thoughts on your situation.

>

> You might still have cancer, but it also seems possible to my

> non-expert eyes that you don't.

>

> At this time, your PSA is not galloping off into truly

> frightening territory. It has not reached a low value, but

> neither has it run up into double digits or climbed back to where

> it was before treatment.

>

> My own treatment with HDR brachytherapy and external beam therapy

> took four or five years (!) to reach a PSA nadir. During the

> first two years it went up and down several times and didn't

> begin a steady decline until year three. It was never as high as

> yours. The highest it reached was 1.8. But your numbers are not

> totally inconsistent with a PSA bouncing around.

>

> If I were in your shoes I might be reluctant to start hormone

> therapy without a clearly indication that I have recurrent

> cancer. But I wouldn't rule it out either. I'd want to talk to

> a real expert medical oncologist with a LOT of prostate cancer

> experience and a high level of smarts. Hopefully Dr. Hogano will

> be that person. If she doesn't strike you as really sharp and up

> on the situation you might consider seeing one of the national

> experts.

>

> You might also want to get frequent PSA tests. When my PSA was

> bouncing around my rad onc drew blood once a month to get a real

> better idea of what was happening. If the PSA is bouncing

> around, you might see that better with frequent tests than

> infrequent ones where it might just happen that you hit two peaks

> or two valleys in a row.

>

> Here are some questions to add to your list for Dr. Hogano (in

> the order I've thought of them, not the order of importance):

>

> 1. How frequently should PSA be tested? Why?

>

> 2. Is there anything short of ADT that should be tried before

> ADT? Examples might be heavy doses of pomegranate juice, or

> vitamins, or resveratrol, or changes in diet.

>

> 3. It is thought by many (maybe most) radiation oncologists that

> neoadjuvant ADT improves radiation outcomes. Is there a

> chance that it could help now? Or is it only possible that

> it will temporarily hold any cancer in check and you will

> become hormone refractory eventually.

>

> 4. What do the scans and blood tests show?

>

> 5. If ADT is not advisable now, what would make it advisable?

> Is there a trigger PSA at which ADT becomes the right choice?

>

> 6. Should a light form of ADT (i.e., finasteride or dutasteride)

> be tried?

>

> Finally, you are very young to have this happen to you. I

> understand how stressful this is. I was 57 when I was diagnosed

> and I went through lots of sleepless nights before, during and

> after treatment. This is probably occupying a lot of your waking

> thoughts and some of your sleeping ones too.

>

> The only advice I can give you about that is to hang in there.

> Whatever happens, you're probably not going to die anytime soon

> and there's a lot of life left to live. If worst comes to worst,

> it would be a shame to spend all the time left in anxiety and

> depression. Remember to do the things that you like to do.

> Remember to care for the people that you care for. Don't give

> over your whole life to cancer.

>

> I wish you the best of luck.

>

> Alan

>

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