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Posted 5/12/2009 3:06 PM (GMT 0)
You all know my stats and my story.  The official game plan is to wait six weeks, re-test the psa, and see if it stays the same, goes down, or goes up.  If it goes up even by .01 on top of where it is right now, then off to the oncologist and radiation folks.

So I am asking with an open mind and heart, what would some of you do now.  Keep in mind, I have limited health insurance, and very limited financial resources, and I am still out of work on unemployment while my wife does work full time as a nurse.

What else could I do during this wait?  Beside the normal do external beam radiation after surgery, what real options would I have?

Please fire away, I am all ears.

David in SC

Posted 5/12/2009 3:39 PM (GMT 0)
While I was waiting I think that I would try diet. There is a lot of hype about various foods, but if you look at reasonably authoritative sources on the web some pretty solid suggestions emerge. Remember that in the best case we are talking about perhaps a 10% chance of improvement. I don’t think I would try supplements – just get what’s right from eating right. The one exception that I would make is that I would try pomegranate juice. The research literature is uncertain just now, but it would feel like I was doing something special. (Think of it as buying pomegranate juice with the money that you save on steak.)

Then there are the overall benefits of eating healthy. One site noted that men with prostate cancer are still more likely to die from a heart attack than from PC.
Posted 5/12/2009 3:42 PM (GMT 0)
Dave,
An option to radiation is HT. It can be done alone or with radiation. I believe that the vast majority of reoccurances are systemic, that's the reason for the low cure rate (30%) on a reoccurance. PAACT has a lot of information on treatments of reoccurances. I just received a packet from them that was chock full of info. The high probability of having to go on HT in the future would make me inclined to just skip the radiation and go straight to HT to kill the PC when it is still weak.
If you had clear margins and your psa is doubling in 3 months there is a high probabilitythat some PC cell are else where in your body.
Some resources on HT:
Prostate Cancer Research Institute, Click on papers, then advanced treatments.
CompassionateOncology.com
PAACT
Beating prostate Cancer through Hormone Therapy and Diet, by Charles Snuffy Meyers
In reviewing the research there are a high percentage of patients that have complete cure after 13 months of HT and many others that are living 10-15 years with intermittent HT.
With all you have been through over the past few years you have been a real trooper. Keep hanging in there.
JT
Posted 5/12/2009 3:49 PM (GMT 0)
Well David...the diet approach is very reasonable...but as I told you personally...I would wait until it reached the 0.2 mark before proceeding. Now the caveat is that if it is rising rapidly as indicated then waiting much more than a few months isn't really an option as you would be at that mark in a few more months.

There has been no added benefit of doing radiation as the savage treatment at the 0.1 mark or the 0.2 mark or even the 0.5 mark because they all have the same out come both in cure and progression. And it has been shown that PSA levels above the 1.2 mark in recurrence has no benefit from radiation whatsoever.

So if I was in your shoes...I would wait until the 0.2...but it's your call and what you feel comfortable with. Besides...waiting until that mark may put you into a better shape financially.

Now lets wait and see how many will jump in and tell me I am nuts for suggesting this.
Posted 5/12/2009 4:39 PM (GMT 0)
David,
I'm certainly new to this PC business but what John T suggests sounds logical to me. If money and insurance were not a problem, you could have a whole bunch of tests to try and locate where the cancer is hiding. Only if you can find it will radiation really help otherwise, HT may be the only option.
Posted 5/12/2009 5:50 PM (GMT 0)
There probably is no test that would locate specifically where recurrent prostate cancer, registering as low as yours, is located. But science says it's likely in the prostate bed or region. Radiation is the next logical step and complete imaging and mapping will be done prior to the first treatment. IMRT will likely knock out any residual disease and has been proven to be very effective in lowering PSA (90%) in such cases. If I had limited resources, I would start there. In fact if I had unlimited resources I would start there. By far the worst treatment I have been through is hormone therapy and would have deleted that one if I could have.

Tony
Posted 5/12/2009 9:03 PM (GMT 0)
Tony,
Where did you read that radiation has no salvage effect after PSA reaches 1.5. This is the first time I've heard of that and it would be pretty important to all those with a reoccurance.
Is there a PSA cut off for a radiation reoccurance where salvage surgery or cryosurgery doesn't work anymore?
JT
Posted 5/12/2009 9:39 PM (GMT 0)

John,
Les was who stated this, but there is mixed information about the benefits of salvage local treatments in studies.  I guess we should not be surprised when the are multiple studies with varied conclusions.  A PSA of 0.4 is usually where most centers focus on beginning salvage radiation.  But why wait?  If a PSA is rising in three consecutive PSA tests then I would not wait.  One study that is pretty solid is from Stanford and Harvard Universities stating that with ADT, salvage IMRT radiation heavily improved survival chances after surgery (see also RTOG 94-13 as well).  I followed this protocol and believe it was the right direction for me to take.

Stanford study:

http://www.ncbi.nlm.nih.gov/pubmed/17459606

While David's numbers were not as high as mine, there is growing support that this protocol will work well for him.  But he'll need to act sooner rather than later. 

Tony

Posted 5/12/2009 10:51 PM (GMT 0)
David, any chance the PSA test from last week is wrong. Wasn't there a post several weeks back from a brother that received results that suggested a increase in PSA. A re-test showed no such increase but rather a lab error. Retest now at a different lab.
Posted 5/12/2009 10:58 PM (GMT 0)

I am sorry to hear the recent news. You are on my mind and I am wishing you the best.

Although I have no experience with salvage treatments (yet?) I would agree with Tony's recommendation, based on what I have read. It certainly sounds like you have time to wait and get at least one more PSA test.

Regarding insurance, I would recommend that you not let any existing coverage lapse. I believe that a lapse can cause delays in coverage due to pre-existing conditions, if/when you change providers. I also believe that a group insurance plan, even if purchased on your own, MUST accept your pre-existing condition, although group plans are more expensive. I am not an expert on this, and someone can correct me if I am wrong. However, I would recommend that you do what you can to protect your insurability.

CaPCa

Posted 5/12/2009 11:03 PM (GMT 0)
coxjajb, same lab been doing all my PSA since age 50, so almost 7 years now, never a mistake, is it possible? yes, but even my dr. thinks it wouldn't be worth it. that's why the next one is scheduled for 6 weeks out.

johnt- i know the least about HT, kind of scared of it, i only know lots of wives tales about it in relationship to men with PC. would it make me impotent, where right now i am not? would it make me become "wet" again instead of dry? I am very hyper sensitive to meds in general, would this affect me?

EdC - my dr already feels, if there is anything left, it would have to be in the prostate bed, and though he is not a radiation guy, he feels it would be best shot to give these micro-amounts a knock out blow.

Tony - neither myself or my dr. intends to "wait and watch" on my new situation. we are talking about 6 weeks only, to see if the psa stays at .10, drops a little, or heaven forbid, goes up even by .01. If it does, I assure you, I will be at the office of the best oncologist in the state (the one I had 10 years ago), and Greenville SC has two, top notch radiation centers. Just like I didnt fool around with a Gleason 7 and High PSA with my PC dx, don't intend to gamble away my life with this turn of events. It is possible, it could lower, that is what my dr. is really hoping for, again, some of the stress using ultra-sensitive tests. I had sex less than 24 hours before this blood draw, I wonder if that still matters after surgery about the psa. just now thought of that.

david in sc

thanks all for the good information so far, trust me, i don't have all the answers, and yes, i get scared too
Posted 5/13/2009 1:17 AM (GMT 0)

Purgatory,

You happen to be at the point that I am preparing myself to be sometime down the road.  When I found out I had prostate cancer I had to do the rapid learning exercise that so many of the people on this site have done ,more openly , just how in the Hell did I get here!.  After being passed to an Urologist by my general practitioner and forwarded on to an unknown surgeon because I asked for robotics instead of the normal cut and paste done in this part of the country I found myself at the last interview before surgery.  I had done my research on my surgeon by asking other surgeons their opinion and they all said “Great Hand” “Cares for his patient”.  He also was an instructor for the da vinci robotics.  I asked how this all works and he explained that he would start the procedure and check the pathology of the lymph nodes before continuing  with robotic surgery, and obviously with the other information he had from the biopsy.  If they were positive he would switch to radical prostatectomy and finish at that point.  I was lucky and everything was negative.  My next question and answer period with him I asked the big liability questions.  “Did You Get It All”.  His answer was,”
There is no way of knowing.   We do our best as surgeons, we play the statistics and we try to give you every possibility of beating this”.  In your case with everything negative, even with an aggressive 3+4=7 Gleason, we might have beaten it.  But we do not know until we wait and see if your PSA increases.  At that point I asked what we do if the PSA rises.  He said that there is no way at this time to tell where the cancer is.  We will treat the statistically high point to eradicate it.  After radiation we go to Hormone treatment and He would pretty much guarantee at my age I would die from something else.  I had my one year anniversary last month with no indication of cancer.  No ED and No incontinence.  Purgatory, I don’t think you have much choice other than to follow the doctors that you trust.  My doctor gave me the hypothetical trip you are on and I would say follow it.   One last comment, if you like boiled chicken, Go for it.   I on the other hand would like to believe that the prime rib and the motorcycle ride I had the other night will just enhance my last days as a celebration in the joy of life.  May we all find peace in this terrible disease?

Age 61 at diagnosis

PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4

DRE Normal, Biopsy positive 1 core in 10,

Clinical T1C, Pre surgery Gleason 3+4=7

Bone scan Normal, Cat Scan Normal

da Vinci robotic Surgery April 30, 2008, Fremont Nebraska

Post surgery Gleason 3+4=7, Pathological P2C

Lymph nodes clear, Margins clear

Hospital stay 2-days, Catheter out 10 days

1-pad a day for 3 weeks

Back at work 7-days after surgery, desk job

Both Nerves spared, 100% with assistance of sildenafil citrate

Post 3 month PSA-undetectable, Post 9 month PSA-undetectable

Posted 5/13/2009 3:11 AM (GMT 0)
iron man, thanks for the advice. i was prepared in the back of my mind for this, but years from now at least, not at six months after surgery. i am hoping for a better reading in six weeks, but if not, prepared to move forward quickly with the next step, though i really don't even want to think about it. at six months, being dry and having no ED, hate to screw all that up with a secondary treatment so soon.

david in sc
Posted 5/13/2009 2:41 PM (GMT 0)
Purgatory- I have no advice to give you but from my time on this forum, I notice that you are always there with help and support to others. I wish you all the best and hope that you are around for a long time and in contiued good health.

Posted 5/13/2009 5:20 PM (GMT 0)
Food for thought. According to this study, you don't want a recurrence years from now as salvage doesn't seem beneficial at that time.

Brady Urological Institute, Johns Hopkins School of Medicine, 600 N Wolfe St, 546 Phipps Bldg, Baltimore, MD 21287, USA. [email protected]

CONTEXT: Biochemical disease recurrence after radical prostatectomy often prompts salvage radiotherapy, but no studies to date have had sufficient numbers of patients or follow-up to determine whether radiotherapy improves survival, and if so, the subgroup of men most likely to benefit. OBJECTIVES: To quantify the relative improvement in prostate cancer-specific survival of salvage radiotherapy vs no therapy after biochemical recurrence following prostatectomy, and to identify subgroups for whom salvage treatment is most beneficial. DESIGN, SETTING, AND PATIENTS: Retrospective analysis of a cohort of 635 US men undergoing prostatectomy from 1982-2004, followed up through December 28, 2007, who experienced biochemical and/or local recurrence and received no salvage treatment (n = 397), salvage radiotherapy alone (n = 160), or salvage radiotherapy combined with hormonal therapy (n = 78). MAIN OUTCOME MEASURE: Prostate cancer-specific survival defined from time of recurrence until death from disease. RESULTS: With a median follow-up of 6 years after recurrence and 9 years after prostatectomy, 116 men (18%) died from prostate cancer, including 89 (22%) who received no salvage treatment, 18 (11%) who received salvage radiotherapy alone, and 9 (12%) who received salvage radiotherapy and hormonal therapy. Salvage radiotherapy alone was associated with a significant 3-fold increase in prostate cancer-specific survival relative to those who received no salvage treatment (hazard ratio [HR], 0.32 [95% confidence interval {CI}, 0.19-0.54]; P<.001). Addition of hormonal therapy to salvage radiotherapy was not associated with any additional increase in prostate cancer-specific survival (HR, 0.34 [95% CI, 0.17-0.69]; P = .003). The increase in prostate cancer-specific survival associated with salvage radiotherapy was limited to men with a prostate-specific antigen doubling time of less than 6 months and remained after adjustment for pathological stage and other established prognostic factors. Salvage radiotherapy initiated more than 2 years after recurrence provided no significant increase in prostate cancer-specific survival. Men whose prostate-specific antigen level never became undetectable after salvage radiotherapy did not experience a significant increase in prostate cancer-specific survival. Salvage radiotherapy also was associated with a significant increase in overall survival. CONCLUSIONS: Salvage radiotherapy administered within 2 years of biochemical recurrence was associated with a significant increase in prostate cancer-specific survival among men with a prostate-specific antigen doubling time of less than 6 months, independent of other prognostic features such as pathological stage or Gleason score. These preliminary findings should be validated in other settings, and ultimately, in a randomized controlled trial.


and


Department of Urology, University of Alabama, Birmingham, AL 35294, USA; Birmingham VA Medical Center (VAMC), Birmingham, AL 35294, USA.

OBJECTIVE: Some studies suggest that cholesterol may promote prostate cancer development. High serum cholesterol levels are commonly treated with statins, which have been associated with decreased prostate cancer risks. Statin use has increased in this country during the 1990s while prostate mortality rates have gone down. In this study, we compare high cholesterol levels to prostate cancer mortality rates among states over time periods in which statin use has changed. We hypothesize that prostate cancer risks from high cholesterol may be reduced when statin use is high. METHODS: State-specific, high cholesterol levels for white males (2001-2003) were compared with age-adjusted prostate cancer mortality rates for each year from 1992 to 2000. To control for medical care access and socioeconomic status, urbanization, family income, and health insurance status were considered. RESULTS: High cholesterol levels correlate inversely with prostate cancer mortality for: 2000 (R = -0.40, P < 0.01); 1999 (R = -0.37, P < 0.01); and 1998 (R = -0.32, P < 0.05), but there was no significant correlation from 1992 to 1997. Statin use was 46%, 47%, and 49% in 1998, 1999, and 2000, respectively, and ranged from 7% in 1992 to 42% in 1997. Urbanization correlated at the P < 0.05 level from 1994 to 2000 but family income and health insurance status did not correlate. CONCLUSIONS: High cholesterol levels were associated with lower prostate cancer mortality rates when statin use was high, but not low, suggesting that statins reduce prostate cancer mortality risks.

Post Edited (Squirm) : 5/13/2009 11:23:19 AM (GMT-6)

Posted 5/13/2009 11:22 PM (GMT 0)
Squirm
I think you may be mis-reading that report. The thrust seems to be that salvage radiation needs to be undertaken within 2 years of bio-chemical relapse occurring to be effective (obviously if relapse has occurred leaving it for more than 2 years enhances your risk of metastases developing). If relapse should occur 10 years down the track after initial treatment then salvage radiation is just as effective. I have seen a study that found that an increase in PSA more than 2 years after initial treatment is highly indicative of local re-occurrence.
Bill
Posted 5/13/2009 11:54 PM (GMT 0)
Bill, once again, I agree fully with your last post. I have no intentions of delaying radiation if this next PSA in 5 1/2 weeks rises even as little as .01 above the .10 it supposedly is right now. Still hoping it was just some kind of bounce from ultra sensitive testing, but I don't know if that is plausible. What might be happening here to me, is what I was afraid of right from the start of my original PC dx. With PSA above 10, rapid PSA velocity, and a confirmed Gleason 7, and high percentage of cancer in the positive cores, I have never been totally convinced it can be contained. Perhaps that is just fear on my part right now. I am still in an air of shock since Monday's dr. visit. Kind of sureal feelings, like how is that rise even possible this soon after having such a clean pathology report.
Posted 5/14/2009 7:02 AM (GMT 0)
David,
With nerve saving surgery there is always the possibility that some benign prostate tissue can remain attached to the nerves. This can easily result in a continuing very low PSA reading (perhaps this is your case). A little sloppiness by a tech running the test (don't forget the overwhelming majority of the tests these guys run deliver PSA of 2 or 3 and upwards and that is what they are used to)......and voila there is an apparent ultrasensitve increase in our PSA. These tests are a completely automatic process where correct machine calibration is essential. It is for this reason that I get my GP to specifically make the pathology request using the words "Ultra-sensitive PSA (progress post prostatectomy)"
As for locating the source of the PSA..........as Tony has stated it is virtually impossible. The chart in this link :
www.prostate-cancer.org/education/riskases/Strum_StrategyOfSuccess2.html

shows the average PSA output of tumour cells. Grade 3 cells produce a reading of about 4 Ng/mL per cubic centimetre of tumour. So a reading of .05 would be delivered by 1/80th of a cc (less than 1/3 the size of a match head). It is interesting that grade 4 cells produce 1/2 the PSA output of grade 3, therefore the tumour comprised of grade 4 cells would be twice as large as a tumour of grade 3 in order to produce the same PSA blood level.
Although the eternal optimist like you, I fully realize that with a Gleason 4+3, 75% of which was grade 4, 4 of 10 cores positive, and with a substantial volume of tumour within the gland I am a pretty good risk of relapse down the road. But there is no point dwelling on it for what will be, will be and we will tackle it if it occurs.
Bill
Bill
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