Update

[Guest guest]

Hello I just had a consult with the nurse practicioner affiliated with my radiation oncologist. I just had my first post proton beam therapy PSA blood test, at the three month mark. I have intermediate cancer, though probably on the high end of intermediate. I had a PSA of 5.7 in May, and a Gleason score of 7 (3+4) with five of 12 needle biopsies positive, with from 60% to 75% of the 5 needle samples containing cancer cells, on two sides of the prostate, but with no evidence of the tumor penetrating the organ's exterior wall. I did have an issue with a bone scan showing something on the small 7th rib on one side, but a second set of Xrays seemed to indicate that this was due to an old fracture. I have had Lupron therapy for seven months, preceded for one month with bicalutimide. And 28 sessions of proton beam therapy probably at a higher daily dosage than your husband had , but probably with the same total amount. My first PSA reading was LESS THAN 0.05 ng/ml. I was told that the thing to watch was the trend line between PSA values and testosterone levels. They should create two parallel sets of values that are expected to gradually rise as the prostate recovers from radiation treatment. The PSA should ideally level off at some point. The radiation oncologist's nurse practicioner stated that they were looking for the PSA to level off at or below 2.0 before considering any additional treatment. As has been discussed on this forum, options then come into play such as a return to antihormone therapy, perhaps for up to a year, then coming off. From what I have read, the PCa can become resistant to antihormone drugs, especially if one stays on antihormone therapy too long. That's all I can add at the moment. You should ask your doctor for the list of options he would consider based on various fact patterns. What if PSA goes above 2.0? What if PSA doubles in X months? It is good to get the possibilities on the table in advance so you can study them. Regards, and do have a happy holiday season. T Poxon Happy Holidays to All,My husband had his PSA test a week ago and it is still slowly climbing just a little faster in the last three months...I'll give you his PSA test results for the past year or so,,,it started after treatment at 0.08 three months later 0.47 to 0.52 to 0.53 and this test was 0.70. I don't like what is happening. Some history,,My husband started with a PSA of 7.9 and a Gleason 9. We were told he had an agressive form of prostate cancer. They started him on Zoladex and he has had 44 IMRT treatments, that was almost two years ago. I was just wondering if anyone is going through the same thing. I told my husband not to worry that it wasn't over 1 yet. But I know down deep he's worried too. We see the oncologist on the 9th of January. I want to go into Boston again and see a prostate cancer specialist if these doctors want to put him back on hormones. Any advice???I hope and pray everyone has a very Happy Holiday.Sincerely,Sheila

[Guest guest]

I actually had a very similar diagnosis as

your husbands. PSA 6.3 raised to 7.3 in six months, biopsy rated a Gleason 9

with perinureal invasion. I was told it was an aggressive form of the cancer

and I needed to take immediate steps. I did go onto a ADT (hormone treatment)

and then got my second, third and fourth opinions. It was decided to try ADT

for 6 months to a year before doing any surgery to help increase the chances of

negative margins from the surgery. I was still having a lot of discomfort 6

months into it and we decided that surgery was the best option. The pathology

show positive margins so 40 sessions of IMRT were ordered as soon as I healed

from surgery (6 months latter). After the radiation I was still on ADT and the

oncologist recommended I stay on it for another year to increase the chances of

a better result. It is now a year and a couple of months since that happened

and I just went off of ADT. My post radiation PSA levels are at less than

0.001 (undetectable). There is a chance that the ADT is keeping my PSA

artificially low so now I am off it and we will be watching it quarterly for

the next year or so to see what happens. Being on ADT for over two years was a

real drag with the hot flashes and all of the other side effects. I did see

references to several studies that supported ADT while going through the other

treatments, so I lived with the side effects and found peace with my feminine

side. We will see what the results are in May and November.

Happy Holidays to All,

My husband had his PSA test a week ago and

it is still slowly climbing just a little faster in the last three

months...I'll give you his PSA test results for the past year or so,,,it

started after treatment at 0.08 three months later 0.47 to 0.52 to 0.53 and

this test was 0.70. I don't like what is happening. Some history,,My husband

started with a PSA of 7.9 and a Gleason 9. We were told he had an

agressive form of prostate cancer. They started him on Zoladex and he has had 44

IMRT treatments, that was almost two years ago. I was just wondering if

anyone is going through the same thing. I told my husband not to worry

that it wasn't over 1 yet. But I know down deep he's worried

too. We see the oncologist on the 9th of January. I want to go into

Boston again

and see a prostate cancer specialist if these doctors want to put him back on

hormones.

Any advice???

I hope and pray everyone has a very Happy

Holiday.

Sincerely,

Sheila

[Guest guest]

> Hello again, Sheila,

> As I advised in November and advise again, time to return to

> androgen deprivation therapy ...

Sheila,

I think that Chuck is arguing that your husband's PSA history

indicates a recurrence and that ADT administered soon after a

recurrence is more effective than ADT administered after the

cancer has already grown to a significant extent.

I can't disagree with any of that. However there is one issue to

consider before deciding on ADT.

It is still _possible_ that your husband does not have a

recurrence, just a fluctuating PSA, very possibly caused by

inflammation in the prostate due to late effects of radiation

damage to the prostate, or from an infection, or from other

causes of prostate inflammation - not all of which are fully

understood. Although the PSA has been rising over a series of

tests, it is rising slowly. The jump from 0.08 to 0.47 is very

likely due to coming off hormone therapy. The subsequent rises

have been relatively small and the PSA is still very much within

the range that could be considered a complete cure after

radiation.

If your husband starts ADT now, there will be little or no more

information gained until he either comes off ADT again or, if he

does have cancer, he becomes hormone refractory. It would be

possible to get on ADT for a year or two or three when in fact it

turns out that it wasn't necessary.

I'm not arguing that Chuck is wrong. He knows more about cancer

and ADT than I do. But I think there is still at least a

possibility that there is no recurrence here, and a possibility

that, even if it is, a little more surveillance won't make a

significant difference in the long term outcome.

One possible approach to the problem is to get PSA tests every

month. They're not expensive. If a doctor orders them I would

expect that insurance would pay (it will actually save the

insurance company a lot of money as compared to going on ADT

right away.)

It is possible that in 3-4 months of testing you will see a

steady rise in PSA. If so, you'll have a stronger reason to go

on ADT and also have data points to make a more reliable

calculation of PSA doubling time.

However there's also a chance that in 3-4 months you'll see the

PSA level off or even decline. Then you might want to continue

active surveillance and hold off on the ADT.

Like Chuck, I'm not a doctor. You'll need to discuss these

issues with a real oncologist. See if he has a strong belief

that this really is a recurrence. See if he has a strong belief

that waiting is good or bad. He may or may not. He may say that

either approach is possible and it's not possible to know in

advance which will be best. In that case you may have to consult

your instincts and personal inclinations.

You have said that you and your husband are worried about this.

I would be too. Anyone would be. I cannot reassure you that

everything is okay and the rising PSA is not significant.

However I would like to give you some advice about cancer

worries.

First of all, even if it is a recurrence, there is an excellent

chance of living many years. Chuck himself is a poster boy for a

successful fight against cancer - being still alive and symptom

free 20 years after his diagnosis. ADT might keep your husband

alive for many years and new treatments are becoming available

that might extend that into quite old age.

Secondly, I'd like to urge the two of you to fight the cancer but

live your lives with as much optimism and engagement as you can.

We're all getting old. We all know that something is going to

get us one day. If it's not the cancer it will be something

else. But we can still make the most of the time we have

remaining. We can still recognize and set aside our fears and

enjoy the life we have.

I'm 65 years old now. Lots of people died before they ever

reached my age. I like to think of every year that remains to me

as a gift, something to savor and enjoy. This way of thinking

helps me to put things in perspective. I hope that it might help

you too.

Best of luck.

Alan

[Guest guest]

Alan,

Thank you for your response. You have much wisdom to share,,I could feel it in your comforting kind words. I am grateful to be alive and so is my husband,,I just hate to see him go through more that's all. I will keep positive,,I do like the idea of having his PSA tested every month for four months. Like you said we would know for sure on what to do. I'll keep you post and I'll keep you in my thoughts and prayers.

Happy HolidaysBest Wishes,

Sheila

To: ProstateCancerSupport Sent: Thursday, December 22, 2011 4:23:39 PMSubject: RE: Update

> Hello again, Sheila,> As I advised in November and advise again, time to return to> androgen deprivation therapy ...Sheila,I think that Chuck is arguing that your husband's PSA historyindicates a recurrence and that ADT administered soon after arecurrence is more effective than ADT administered after thecancer has already grown to a significant extent.I can't disagree with any of that. However there is one issue toconsider before deciding on ADT.It is still _possible_ that your husband does not have arecurrence, just a fluctuating PSA, very possibly caused byinflammation in the prostate due to late effects of radiationdamage to the prostate, or from an infection, or from othercauses of prostate inflammation - not all of which are fullyunderstood. Although the PSA has been rising over a series oftests, it is rising slowly. The jump from 0.08 to 0.47 is verylikely due to coming off hormone therapy. The subsequent riseshave been relatively small and the PSA is still very much withinthe range that could be considered a complete cure afterradiation.If your husband starts ADT now, there will be little or no moreinformation gained until he either comes off ADT again or, if hedoes have cancer, he becomes hormone refractory. It would bepossible to get on ADT for a year or two or three when in fact itturns out that it wasn't necessary.I'm not arguing that Chuck is wrong. He knows more about cancerand ADT than I do. But I think there is still at least apossibility that there is no recurrence here, and a possibilitythat, even if it is, a little more surveillance won't make asignificant difference in the long term outcome.One possible approach to the problem is to get PSA tests everymonth. They're not expensive. If a doctor orders them I wouldexpect that insurance would pay (it will actually save theinsurance company a lot of money as compared to going on ADTright away.)It is possible that in 3-4 months of testing you will see asteady rise in PSA. If so, you'll have a stronger reason to goon ADT and also have data points to make a more reliablecalculation of PSA doubling time.However there's also a chance that in 3-4 months you'll see thePSA level off or even decline. Then you might want to continueactive surveillance and hold off on the ADT.Like Chuck, I'm not a doctor. You'll need to discuss theseissues with a real oncologist. See if he has a strong beliefthat this really is a recurrence. See if he has a strong beliefthat waiting is good or bad. He may or may not. He may say thateither approach is possible and it's not possible to know inadvance which will be best. In that case you may have to consultyour instincts and personal inclinations.You have said that you and your husband are worried about this.I would be too. Anyone would be. I cannot reassure you thateverything is okay and the rising PSA is not significant.However I would like to give you some advice about cancerworries.First of all, even if it is a recurrence, there is an excellentchance of living many years. Chuck himself is a poster boy for asuccessful fight against cancer - being still alive and symptomfree 20 years after his diagnosis. ADT might keep your husbandalive for many years and new treatments are becoming availablethat might extend that into quite old age.Secondly, I'd like to urge the two of you to fight the cancer butlive your lives with as much optimism and engagement as you can.We're all getting old. We all know that something is going toget us one day. If it's not the cancer it will be somethingelse. But we can still make the most of the time we haveremaining. We can still recognize and set aside our fears andenjoy the life we have.I'm 65 years old now. Lots of people died before they everreached my age. I like to think of every year that remains to meas a gift, something to savor and enjoy. This way of thinkinghelps me to put things in perspective. I hope that it might helpyou too.Best of luck.Alan

[Guest guest]

Alan,Thank you for another excellent letter which I am sure many others besides Sheila will find helpful. I’m on intermittent ADT with Triptorelin. In 6 months it reduced my PSA from 10.2 down to 0.1. The side effects were not too extreme – hot flushes and lack of libido. I’ve been off it nearly three months and the PSA has gone up to 0.3. My libido has returned and the hot flushes have finally gone. The idea is to start ADT again when my PSA reaches 15 and continue the cycle until it fails to work. There is nothing to say how long that will be but I am optimistic that it may be several years and that in the meantime other treatments will become available. Your advice about optimism and engagement hits the nail right on the head. I am 66 and quite a few of my friends are no longer around. My resolutions (in no particular order) are:- to enjoy watching my grandchildren grow up and help where I can- to maintain a good relationship with my wife and four daughters- to keep as active as I can doing things I enjoy (I’m part of the backing group for a tour with a very well-known pop singer in February)- to avoid things which I find stressful- to try and keep my mouth shut when it would be better not to say anything (don’t often succeed there!) Have a great Christmas (or whatever you celebrate at this time of year). Bob From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: 23 December 2011 00:24To: ProstateCancerSupport Subject: RE: Update > Hello again, Sheila,> As I advised in November and advise again, time to return to> androgen deprivation therapy ...Sheila,I think that Chuck is arguing that your husband's PSA historyindicates a recurrence and that ADT administered soon after arecurrence is more effective than ADT administered after thecancer has already grown to a significant extent.I can't disagree with any of that. However there is one issue toconsider before deciding on ADT.It is still _possible_ that your husband does not have arecurrence, just a fluctuating PSA, very possibly caused byinflammation in the prostate due to late effects of radiationdamage to the prostate, or from an infection, or from othercauses of prostate inflammation - not all of which are fullyunderstood. Although the PSA has been rising over a series oftests, it is rising slowly. The jump from 0.08 to 0.47 is verylikely due to coming off hormone therapy. The subsequent riseshave been relatively small and the PSA is still very much withinthe range that could be considered a complete cure afterradiation.If your husband starts ADT now, there will be little or no moreinformation gained until he either comes off ADT again or, if hedoes have cancer, he becomes hormone refractory. It would bepossible to get on ADT for a year or two or three when in fact itturns out that it wasn't necessary.I'm not arguing that Chuck is wrong. He knows more about cancerand ADT than I do. But I think there is still at least apossibility that there is no recurrence here, and a possibilitythat, even if it is, a little more surveillance won't make asignificant difference in the long term outcome.One possible approach to the problem is to get PSA tests everymonth. They're not expensive. If a doctor orders them I wouldexpect that insurance would pay (it will actually save theinsurance company a lot of money as compared to going on ADTright away.)It is possible that in 3-4 months of testing you will see asteady rise in PSA. If so, you'll have a stronger reason to goon ADT and also have data points to make a more reliablecalculation of PSA doubling time.However there's also a chance that in 3-4 months you'll see thePSA level off or even decline. Then you might want to continueactive surveillance and hold off on the ADT.Like Chuck, I'm not a doctor. You'll need to discuss theseissues with a real oncologist. See if he has a strong beliefthat this really is a recurrence. See if he has a strong beliefthat waiting is good or bad. He may or may not. He may say thateither approach is possible and it's not possible to know inadvance which will be best. In that case you may have to consultyour instincts and personal inclinations.You have said that you and your husband are worried about this.I would be too. Anyone would be. I cannot reassure you thateverything is okay and the rising PSA is not significant.However I would like to give you some advice about cancerworries.First of all, even if it is a recurrence, there is an excellentchance of living many years. Chuck himself is a poster boy for asuccessful fight against cancer - being still alive and symptomfree 20 years after his diagnosis. ADT might keep your husbandalive for many years and new treatments are becoming availablethat might extend that into quite old age.Secondly, I'd like to urge the two of you to fight the cancer butlive your lives with as much optimism and engagement as you can.We're all getting old. We all know that something is going toget us one day. If it's not the cancer it will be somethingelse. But we can still make the most of the time we haveremaining. We can still recognize and set aside our fears andenjoy the life we have.I'm 65 years old now. Lots of people died before they everreached my age. I like to think of every year that remains to meas a gift, something to savor and enjoy. This way of thinkinghelps me to put things in perspective. I hope that it might helpyou too.Best of luck.Alan

[Guest guest]

Visited the oncologist at his York clinic today. He works out of Leeds St 's.

Last half of 2011 my PSA had gone up to 109. This coincided with my urologist retiring just when he would have handed me on to oncology.

We discussed and decided on delaying chemo and trying dexamethazone to see if that would give me some extra time before going onto Taxotere. The dexamethazone will replace Diethylstilbesterol. I will still get Zoledex.

I also suggested adding Zometa and he agreed. So I start Zometa infusions tomorrow plus Calcium.

I'll see him again in 4 weeks

[Guest guest]

> Visited the oncologist at his York clinic today. He works out

> of Leeds St 's.

>

> Last half of 2011 my PSA had gone up to 109. This coincided

> with my urologist retiring just when he would have handed me on

> to oncology.

>

> We discussed and decided on delaying chemo and trying

> dexamethazone to see if that would give me some extra time

> before going onto Taxotere. The dexamethazone will replace

> Diethylstilbesterol. I will still get Zoledex.

>

> I also suggested adding Zometa and he agreed. So I start Zometa

> infusions tomorrow plus Calcium.

>

> I'll see him again in 4 weeks

>

>

,

I, and I believe everyone in this group, are wishing the best of

luck to you and your family.

Alan