Re: 18 months post IGRT Results

[Guest guest]

Chris:

You're about where I was when I was diagnosed. Slight increase in PSA to 5.7, nothing in the digital exam. But one sample out of 12 was malignant, so I did 44 IGRT treatments and now PSA is .1, thank God.

What to ask? Ask for a rundown of treatments, and don't let the uro downplay new treatments such as Hifu, etc. just because he/she is not experienced with them. Ask the uro for the pros and cons of ADT. I had a Lupron shot, and it was not the nightmare some describe, at least for me, and I have 15 years on you. Ask for a proposed schedule and stick to it; I was hustled into getting a TUMT done, which I probably didn't need, and it left me incontinent and impotent. Now the next step apparently is the green light laser since the TUMT did nothing positive and everything negative, at least for me. Don't fall for the "technician will be here next week, so let's get you scheduled." I did and I regret it. Remember, this is a slow growing cancer, assuming you have PCa in the first place, and I hope you don't.

If all of us demanded to know the pros and cons of each treatment and the urgency for each, a lot of uros might be missing the downstroke on that new yacht or country club membership, but we would go into every step of the way better informed by this site and others. For the vast majority of us, there's no big rush.

Good health,

Tom

PSA .1, 44 IGRT treatments, 3+3, 65 years old.

18 months post IGRT Results

Hi Group,

Just downloaded my 18 month post IGRT results direct from the lab. PSA not was expecting; it has risen from 1.98 3 months ago to 4.92 yesterday. I have an appointment with my Oncologist on Thursday morning, can anyone advise what questions I should be asking? I do intend to ask for a retest just in case, but I can't see this being a 'bounce' as level has more than doubled in 3 months. Previous test had shown a small increase from 1.78 to 1.98 so I'll be asking Onco if we are looking at biochemical failure yet. Anyone been in a similar position and then found PSA went on to fall? I figure I should have reached PSA nadir by about now.

Really don't want to start ADT just yet ! Though guess I will have to have that discussion with Onco. If doubling time continues at this rate is ADT likely to extend life significantly?

I'm 50, gleason 7 (4+3) and PSA 5.56 at time of diagnosis, stage T2a N0M0.

Malaga,Spain

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..

[Guest guest]

Thanks Tom,

With a Gleason of 7 (4+3) I definitely had cancer. I've now had 40 sessions of IGRT. If it is a return of the PCa I'm not sure there are many options - I didn't think HIFU was suitable as a salvage technique?

Chris

18 months post IGRT Results

Hi Group,

Just downloaded my 18 month post IGRT results direct from the lab. PSA not was expecting; it has risen from 1.98 3 months ago to 4.92 yesterday. I have an appointment with my Oncologist on Thursday morning, can anyone advise what questions I should be asking? I do intend to ask for a retest just in case, but I can't see this being a 'bounce' as level has more than doubled in 3 months. Previous test had shown a small increase from 1.78 to 1.98 so I'll be asking Onco if we are looking at biochemical failure yet. Anyone been in a similar position and then found PSA went on to fall? I figure I should have reached PSA nadir by about now.

Really don't want to start ADT just yet ! Though guess I will have to have that discussion with Onco. If doubling time continues at this rate is ADT likely to extend life significantly?

I'm 50, gleason 7 (4+3) and PSA 5.56 at time of diagnosis, stage T2a N0M0.

Malaga,Spain

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..

[Guest guest]

elhorizonte wrote:

> Just downloaded my 18 month post IGRT results direct from the

> lab. PSA not was expecting; it has risen from 1.98 3 months ago

> to 4.92 yesterday. I have an appointment with my Oncologist on

> Thursday morning, can anyone advise what questions I should be

> asking? I do intend to ask for a retest just in case, but I

> can't see this being a 'bounce' as level has more than doubled

> in 3 months. Previous test had shown a small increase from 1.78

> to 1.98 so I'll be asking Onco if we are looking at biochemical

> failure yet. Anyone been in a similar position and then found

> PSA went on to fall? I figure I should have reached PSA nadir

> by about now.

>

> Really don't want to start ADT just yet ! Though guess I will

> have to have that discussion with Onco. If doubling time

> continues at this rate is ADT likely to extend life

> significantly?

>

> I'm 50, gleason 7 (4+3) and PSA 5.56 at time of diagnosis,

> stage T2a N0M0.

I'm very sorry to hear about the rise in PSA Chris. It looks

like you are likely to be put on ADT very soon.

Could it still be a bounce? It is possible. The highest bounce

I ever heard about was around 23, and it is my understanding that

bounces can typically occur for up to around 3 years after

treatment. However I should think that it makes sense at this

point to be planning for what to do if it's not a bounce.

Here are some suggestions:

1. Ask for monthly PSA tests from now on so you can really see

what's going on in more detail.

2. Ask about what other tests might be useful in determining:

a. Whether you have a recurrence.

b. Whether it's local or systemic.

Some that might be suggested are a bone scan, PET scan,

ultrasound, or MRI. To my knowledge, those tests can

sometimes detect a distant metastasis, but if the tests are

negative, they don't prove that you don't have one.

If you have a recurrence and it's local, it is my

understanding that HIFU can indeed be used for salvage

therapy after radiation. However, it's going to be hard to

establish that the problem is local and I don't know whether

it makes sense to try HIFU purely on speculation. The

educated guesses of a very experienced specialist are going

to be more useful than the opinions of patzers like me.

3. Try to find a medical oncologist who specializes in prostate

cancer.

They're not easy to find and you may very well have to settle

for one who treats many types of cancers. You might ask them

what they know about dutasteride, ketoconazole, Revlimid,

estradiol, Abiraterone and Provenge - all drugs that are used

in prostate cancer as well as the more common LHRH agonists.

If the doc says " Huh? " when you mention the drug names, then

he's not a prostate cancer specialist. That doesn't mean you

can't work with him or that he's not a good oncologist, but

you'll need to do some of your own research and present him

with ideas from time to time - something that's not a bad

thing to do even with a real specialist.

4. Ask about supplements - if you're not already taking them.

I'm thinking of pomegranate extract, resveratrol, lycopene,

EGCG, vitamin D, maybe others. I don't have much faith in

them, but they're cheap and, as far as anyone know, pretty

safe.

5. Ask about combination therapies.

Some specialists advocate " triple ADT " , others are opposed.

Some are now saying early chemotherapy plus ADT can work

better than ADT alone and there are clinical trials underway

testing this.

I wish we had strong evidence for the best course of action

but, as far as I know, we don't.

6. Get yourself some books on advanced prostate cancer and look

for some groups like this one that specialize in advanced

PCa.

If I were you and I were convinced I had a recurrence, I think

I'd want to try ADT sooner rather than later. It is my

understanding that the effects of anti-cancer drugs are generally

greater when the cancer is small and held small, than when the

cancer is spread all around. One oncologist I spoke to advised

me to get on ADT sooner rather than later if I get a recurrence

and said that clinical trials have shown that people who get

treated earlier live longer.

If you can get monthly PSA tests, you might wait to see the next

result. If it's the same or lower, try another month, and so on.

On the other hand, if it's still going up, I might personally not

want to wait any longer.

ADT is a pain in the ass, but it's not the end of life by any

means. The side effects are bearable and can be mitigated in

various ways - among the most important of which is exercise. I

found that even sex is possible on ADT if you're determined to

make it happen.

How well you will do on it depends on the characteristics of your

particular cancer. Some men live 15 or more years on ADT alone.

I know a man whose PSA is still undetectable after about 8 years

on ADT. Terry Herbert, in this group, has had no treatment other

than ADT and was diagnosed 14 years ago. If I remember

correctly, Metcalf, also in this group, has been on ADT for

more than a decade.

As we all know, s--t happens. But life can still be very good.

Try not to get too depressed about this. I think you've still

got a lot of life ahead of you.

Best of luck.

Alan

[Guest guest]

Sorry to hear..but my Gleason 7..and psa was 2 and then went to 16 in 9 mo's...so did not have any choice.

BUT..i'm 73..and if it continues to rise...don't see how you avoid treatment!

To: ProstateCancerSupport Sent: Tue, May 25, 2010 10:00:53 AMSubject: Re: 18 months post IGRT Results

elhorizonte wrote:> Just downloaded my 18 month post IGRT results direct from the> lab. PSA not was expecting; it has risen from 1.98 3 months ago> to 4.92 yesterday. I have an appointment with my Oncologist on> Thursday morning, can anyone advise what questions I should be> asking? I do intend to ask for a retest just in case, but I> can't see this being a 'bounce' as level has more than doubled> in 3 months. Previous test had shown a small increase from 1.78> to 1.98 so I'll be asking Onco if we are looking at biochemical> failure yet. Anyone been in a similar position and then found> PSA went on to fall? I figure I should have reached PSA nadir> by about now.> > Really don't want to start ADT just

yet ! Though guess I will> have to have that discussion with Onco. If doubling time> continues at this rate is ADT likely to extend life> significantly?> > I'm 50, gleason 7 (4+3) and PSA 5.56 at time of diagnosis,> stage T2a N0M0.I'm very sorry to hear about the rise in PSA Chris. It lookslike you are likely to be put on ADT very soon.Could it still be a bounce? It is possible. The highest bounceI ever heard about was around 23, and it is my understanding thatbounces can typically occur for up to around 3 years aftertreatment. However I should think that it makes sense at thispoint to be planning for what to do if it's not a bounce.Here are some suggestions:1. Ask for monthly PSA tests from now on so you can really seewhat's going on in more detail.2. Ask about what other tests might be useful in determining:a. Whether you have a

recurrence.b. Whether it's local or systemic.Some that might be suggested are a bone scan, PET scan,ultrasound, or MRI. To my knowledge, those tests cansometimes detect a distant metastasis, but if the tests arenegative, they don't prove that you don't have one.If you have a recurrence and it's local, it is myunderstanding that HIFU can indeed be used for salvagetherapy after radiation. However, it's going to be hard toestablish that the problem is local and I don't know whetherit makes sense to try HIFU purely on speculation. Theeducated guesses of a very experienced specialist are goingto be more useful than the opinions of patzers like me.3. Try to find a medical oncologist who specializes in prostatecancer.They're not easy to find and you may very well have to settlefor one who treats many types of cancers. You might ask themwhat they know about dutasteride,

ketoconazole, Revlimid,estradiol, Abiraterone and Provenge - all drugs that are usedin prostate cancer as well as the more common LHRH agonists.If the doc says "Huh?" when you mention the drug names, thenhe's not a prostate cancer specialist. That doesn't mean youcan't work with him or that he's not a good oncologist, butyou'll need to do some of your own research and present himwith ideas from time to time - something that's not a badthing to do even with a real specialist.4. Ask about supplements - if you're not already taking them.I'm thinking of pomegranate extract, resveratrol, lycopene,EGCG, vitamin D, maybe others. I don't have much faith inthem, but they're cheap and, as far as anyone know, prettysafe.5. Ask about combination therapies.Some specialists advocate "triple ADT", others are opposed.Some are now saying early chemotherapy plus ADT can workbetter

than ADT alone and there are clinical trials underwaytesting this.I wish we had strong evidence for the best course of actionbut, as far as I know, we don't.6. Get yourself some books on advanced prostate cancer and lookfor some groups like this one that specialize in advancedPCa.If I were you and I were convinced I had a recurrence, I thinkI'd want to try ADT sooner rather than later. It is myunderstanding that the effects of anti-cancer drugs are generallygreater when the cancer is small and held small, than when thecancer is spread all around. One oncologist I spoke to advisedme to get on ADT sooner rather than later if I get a recurrenceand said that clinical trials have shown that people who gettreated earlier live longer.If you can get monthly PSA tests, you might wait to see the nextresult. If it's the same or lower, try another month, and so on.On the other hand,

if it's still going up, I might personally notwant to wait any longer.ADT is a pain in the ass, but it's not the end of life by anymeans. The side effects are bearable and can be mitigated invarious ways - among the most important of which is exercise. Ifound that even sex is possible on ADT if you're determined tomake it happen.How well you will do on it depends on the characteristics of yourparticular cancer. Some men live 15 or more years on ADT alone.I know a man whose PSA is still undetectable after about 8 yearson ADT. Terry Herbert, in this group, has had no treatment otherthan ADT and was diagnosed 14 years ago. If I remembercorrectly, Metcalf, also in this group, has been on ADT formore than a decade.As we all know, s--t happens. But life can still be very good.Try not to get too depressed about this. I think you've stillgot a lot of life ahead of you.Best

of luck.Alan

[Guest guest]

YOU NAILED it 100 % ...TAKE YOUR TIME..and get all your options on the table. I'm VERY HAPPY I elected the hormone shot..and external radiation. HALF DONE..and side effects annoying..but nothing too

difficult to handle.. NO INCONTINENCE..and still able to achieve a 90% erection with help from the little blue guy

To: ProstateCancerSupport Sent: Tue, May 25, 2010 7:49:46 AMSubject: Re: 18 months post IGRT Results

Chris:

You're about where I was when I was diagnosed. Slight increase in PSA to 5.7, nothing in the digital exam. But one sample out of 12 was malignant, so I did 44 IGRT treatments and now PSA is .1, thank God.

What to ask? Ask for a rundown of treatments, and don't let the uro downplay new treatments such as Hifu, etc. just because he/she is not experienced with them. Ask the uro for the pros and cons of ADT. I had a Lupron shot, and it was not the nightmare some describe, at least for me, and I have 15 years on you. Ask for a proposed schedule and stick to it; I was hustled into getting a TUMT done, which I probably didn't need, and it left me incontinent and impotent. Now the next step apparently is the green light laser since the TUMT did nothing positive and everything negative, at least for me. Don't fall for the "technician will be here next week, so let's get you scheduled." I did and I regret it. Remember, this is a slow growing cancer, assuming you have PCa in the first place, and I hope you don't.

If all of us demanded to know the pros and cons of each treatment and the urgency for each, a lot of uros might be missing the downstroke on that new yacht or country club membership, but we would go into every step of the way better informed by this site and others. For the vast majority of us, there's no big rush.

Good health,

Tom

PSA .1, 44 IGRT treatments, 3+3, 65 years old.

[ProstateCancerSupp ort] 18 months post IGRT Results

Hi Group,

Just downloaded my 18 month post IGRT results direct from the lab. PSA not was expecting; it has risen from 1.98 3 months ago to 4.92 yesterday. I have an appointment with my Oncologist on Thursday morning, can anyone advise what questions I should be asking? I do intend to ask for a retest just in case, but I can't see this being a 'bounce' as level has more than doubled in 3 months. Previous test had shown a small increase from 1.78 to 1.98 so I'll be asking Onco if we are looking at biochemical failure yet. Anyone been in a similar position and then found PSA went on to fall? I figure I should have reached PSA nadir by about now.

Really don't want to start ADT just yet ! Though guess I will have to have that discussion with Onco. If doubling time continues at this rate is ADT likely to extend life significantly?

I'm 50, gleason 7 (4+3) and PSA 5.56 at time of diagnosis, stage T2a N0M0.

Malaga,Spain

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..