Making the decision for treatment

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pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/15/2010 5:38 PM (GMT -6)   
Since I first posted a week or so ago, my husband and I have been to Pittsburgh for a consultation and second opinion meeting with a surgeon and a radiation oncologist. Also received advice from other prostate cancer survivors and are 3/4ths of the way through Patrick Walsh's book. Both the surgeon and radiation oncologist expressed their confidence that Tim can be cured of PCa and both expressed their belief that their specialty could do it. The surgeon said surgery would provide a "slight edge". We didn't get a similar statement from the radiation oncologist but he thought Tim could be cured w/o surgery.

In addition, while pondering all the advice (most of which from fellow PCa cancer survivors was, "Get it out as soon as possible!"), I received a phone call from an agent with the company that holds my husband's term life insurance policy which is set to expire in 2012.

The agent said he called to advise me that since 7.5 years had passed since Tim had colon cancer, he was now eligible to extend his 10 year term policy at the standard rates instead of a big increase due to having had cancer. He then asked, "Your husband hasn't had any major changes in his health has he?" I said, "Well if you had called me two weeks ago, I could have said yes, but he has just been diagnosed with prostate cancer. " The agent said, "He's having it out, right?". I told him that we were leaning in that direction but that we had not made the final decision yet.

The agent proceeded to say that he didn't want to give medical advice but that Tim should have the RP because if he did, as long as his PSA is undetectable at one year after surgery, he could still extend his policy at standard rates. The insurance company would treat his prostate cancer as a non-event, as if it had not happened and it would have no impact on his rating. But if he had radiation or seeding, that the insurance company would either not write him or would raise the premium so high that it would not be affordable.

I stated that the information he was providing me was very telling. He said that the insurance industry bases its rates on actuarial tables that are very precisely tabulated and there is a reason for the difference in rates between PCa treated with RP and other methods of treatment. Add that to a statement from a fellow church member, age 76, who had an RP 14 years ago, "All the guys who had RP around the time I did are still here, the ones who didn't aren't.". Nothing about those conversations made us feel comfortable about doing less than RP.

The other factors in our decision are the fact that if surgery fails, he can still have radiation....but if radiation fails, surgery is not an option. So we have crossed over to the surgery side of the fence. We had thought about waiting until the slow time in Tim's practice (mid-December - January) but my brother cautioned against that, basically restating Patrict Walsh's statement that PCa issues no press release when it leaves the prostate....that no one knows the day the first cancer cell leaves and takes up residence in another part of the body. That if we waited a few extra months and it turns out the cancer has escaped the prostate, and we did it to try to lessen the financial impact of being away from the office during a busy time, we would always wonder if an earlier surgery date would have prevented the spread. That no matter how much income we saved by waiting will fade to insignificance. When the urology group's nurse called for our decision, we took the first available date....and Tim's surgery is scheduled for October 1st.

I do wonder how significant the jump from 10/09 to 04/10 from 1.55 to 4.26 is. My husband was not even told at the 10/09 consultation about the free PSA being 7.74% or that the free PSA percentage was a factor to be considered. We didn't know that free PSA had been tested until I asked about it last week. I guess the urologist thought that since the PSA was down to 1.55 from 3.06 just 6 months prior, the low free PSA percentage was a non-factor. However, after reading that any free PSA percentage below 15% (or was that 25%....I can't quite remember) is worrisome, I wonder if we should have been urged to consider a biopsy at that point.

Also, our local pathologist did not provide percentages with each core report - though it was clear that both lobes were involved in multiple places. The Pittsburgh pathology report did and as you can see, the percentages are all over the map from <5% to 90%. Is there any significance to that? Is that common?
Husband DX @ 64; 7.5 year survivor colon cancer; father had PCa @ age 65
04/09 - PSA 3.06 - retest in 6 mo
10/09 - PSA 1.55 Free PSA 7.74% - retest in 6 mo
04/10 - PSA 4.26

Biopsy 7/10
R base - 3+3=6 10%
R mid & apex - benign
R anterior horn - 3+4=7 20%
L base - 3+4=7 90%
L mid - atypical small acinar prolif
L apex - 3+3=6 < 5%
L anterior horn - 4+3=7 60%

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/15/2010 6:22 PM (GMT -6)   
I think that you two have done good due dilligence in preparing for your decision. I think that surgery first, might be your best shot, the core with 90% Gleason 7 is pretty serious. In fact, the amount of Gleason 7 just in these few cores would make me want to take action. Sounds like you been getting some good advice from the doctors, etc.

Good luck as you plan ahead.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7/7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy, on Catheter #20

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/15/2010 6:31 PM (GMT -6)   
Your post says it all for me.  You have done your homework, and with the help of a life insurance agent, have come to a decsion.
 
It is is my opinion that once you reach the point where you are, it is time to put away all of the past decsion points and proceed to the finish line.
 
Good luck on your journey.  Don't look back, don't second guess. 
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 8/15/2010 6:34 PM (GMT -6)   
Sounds like you got you head around this PCa stuff. You are doing your homework and making a decision on the knowledge that you are adquiring. As David stated you bet this stuff in serious. So much for the statement that if you have to have cancer this is the one to get.

Do keep us posted. We will be thinking about the 2 of you.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 8/15/2010 8:40 PM (GMT -6)   
That is quite interesting and maybe the first ever post on HW where an actuary helped make the tx choice. Good luck with all and keep us posted.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/15/2010 9:19 PM (GMT -6)   
As others have said -- you have learned about PC, considered your choices, and made a decision. Now is the time to look forward not back. Given the uncertainty of any medical diagnosis you have done the best possible job.

P.S. heed the advice to give the old walnut a lot of exercise.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains
12 mo. PSA 0.00 -- still one light pad and ED
16 mo PSA 0.00 -- light pad just for security, ED still an issue

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3889
   Posted 8/15/2010 9:19 PM (GMT -6)   
While the insurance agents advise was interesting, he is not signing up for both surgery AND radiations side effects as you and I both probably are...Did the agent offer a 10 year extension?

"You are fine with us as long as long as your PSA level stays undetectable for one year. That might be a tall order with that 4+3+7 @ 90%. and your PSA velocity..

With radiation, the PSA will never reach undetectable and may take two years to reach nadir..As far as life insurance companies are concerned, that fact alone makes you un-insurable.

But like you, I'm still favoring surgery because then you pretty much KNOW where you stand. Radiation, especially a combination of both seeds and IMRT might work just as well if not better, but now you usually must deal with HT side effects too....
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 8/15/2010 9:55 PM (GMT -6)   
Very interesting slant on the radiation vs. surgery debate, actuarial tables.

Although it seems to make the decision fairly black and white I don’t think it fairly represents the situation.

Firstly the actuarial tables themselves are probably not that recent and the insurance companies tend to be conservative – and surgery has longer term statistics. Also the results are relatively black and white, ideally the psa would become undetectable and stay that way – in which case the insurance company would treat the insured as they would any other member of society without cancer.

For life expectancies upto the 15 year mark I can see the benefit of primary therapies such as brachy, they have been proven to be as good as surgery upto the 15 year mark with less initial side effects. But this is a harder story for the insurance companies to understand – psa levels don’t go down to zero and stay there. Also the stats themselves are relatively recent and therefore for a conservative entity such as an insurance company – are suspect.

An
Husband's age: 52. We live in Sydney Australia.

In 2007 my husbands PSA level was 2.5.
In Feb 2008 it was 1.7
In Oct 2009 it was 3.67 with a free PSA ratio of 27
In Feb 2010 it was 4.03 with a free PSA ratio of 31.
In June 2010 it was 2.69

DRE normal.
Biopsy 28/4/2010: results, negative for a diagnosis of PC however 3 focal ASAPs on left side of prostate at base, apex and at transition resulting in the conclusion "...small acinar proliferation is suspicious but not diagnostic for prostatic adenocarcinoma."
Review of biopsy by experienced pathologist, results,
1 out of 12 core diagnosed with 10% of Gleason score 3+3 cancer (left transitional)
1 out of 12 cores with ASAP (left apex), suspicious but not diagnostic of cancer

Next steps: Nerve sparing RP on 20th August 2010.

My husband's maternal grandfather died of prostate cancer at 72. His maternal uncle died of prostate cancer at 60. Because he is the third generation to be diagnosed he has hereditary PC.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3889
   Posted 8/15/2010 10:11 PM (GMT -6)   
The insurance company representative's viewpoint has nothing to do with the effectivness of either surgery or radiation in treating prostate cancer. It has EVERYTHING to do with the profitability of the insurance company.. Surgery and the one year PSA result gives them a hard point on which to base a decision as to whether to insure you or not. They know the cancerous prostate was removed and at one year, there is no detectable PSA. Therefore, you are safe to insure for another 5 or 10 years. With radiation, they have no such hard point. There is still a PSA score that is caused by prostate tissue of unknown character. From their viewpoint, not a safe bet, even though your chances for survival are just as good if not better, they can't judge it so they will avoid it.

You are COUNTING on the PSA being undetectable at one year. For your sake I sure hope it is, but it's not a sure thing and your insurance agent knows it...

While the insurance agents viewpoint was interesting, don't base your treatment path on that information alone..

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/15/2010 10:19 PM (GMT -6)   
I agreee with Fairwind's post above. An insurance company's opinion would be the last one I would be interested in, their motives are all wrong here. I am afraid too much info might have already been told to the insurance company. Loose lips still sink ships.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39

reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 8/15/2010 10:40 PM (GMT -6)   
In reading your history, it sounds very similar to mine as far as PSA and free PSA and the decisions to be made.  My PSA bounced around a lot before my positive biopsy, and my urologist didn't think that was typical of PC.  But yours is at least the fourth story I've heard on this board that is similar to mine in the PSA bouncing like crazy.  The question is whether to look at the 1.55 to 4.26 change or the 3.06 to 4.26 change as being the most important from a PSA velocity perspective.  I had the same question, and in the end, it didn't matter, the biopsy trumped the PSA.  As far as free PSA, as I've commented on another post, I don't think most practicing urologists go the biopsy route for low free PSA as long as the total PSA is reasonably low -- even though research shows they probably should.
 
Your biopsy shows a significant amount of 3+4 and 4+3, as mine did, and yes, my percentages were also all over the map.  I've been told this is for two reasons.  One, a cancerous spot may overlap between two portions of the prostate, so the biopsy will have different percentages showing up in different portions. Two, because PC is a multifocal disease, that is, it's not just one cancer spot, but several of them in different portions of the prostate. 
 
In my case the radiologist told me that if I chose seeds I should also have external radiation due to the amount of cancer that had shown up on the biopsy.  That convinced me to go the surgery route, and I'm glad I did, because the pathology report showed that the cancer was less than 1mm away from leaving the capsule, and I had some spots of 4+4.  So far so good, with zero PSA, but would I have been just as well, or bettter off, with radiation?  I will never know, but I wanted the best chance of having the cancer out, even if it meant some more immediate side effects.
 
It's the toughest choice I've ever made, and I'm sure it's just as tough for you.  Best of luck and, as others have said, don't put too much weight on the insurance guy, even if he is well meaning.  If you do go the surgery route, my advice is to have it at the earliest possible time that your surgeon is available.  No sense in waiting around.
PSA history:

May 2005 2.7

Mar 2006 3.2
10 May 2007 4.1
24 May 2007 2.9
20 Jun 2007 3.3
Sep 2007 2.6
Jul 2008 3.8
May 2009 5.6, followed by biopsy (age 64)

8 out of 12 cores positive Gleason 3+4=7 Stage T2a
Da Vinci Surgery 08/07/2009
PathologyuUpgrade to Gleason 4+3=7 Stage pT2c
Neg Margins and Nodes
Extracapsular extension noted but neg Extraprostatic Extention (??)
Dry immediately
Daily Cialis 5mg slow recovery
First PSA Nov 2009 <0.1
Second PSA Feb 2010 0.01
Third PSA Apr 2010 <.014
Fourth PSA May 2010 <0.1

Still dry but pills for ED don't work well

Starting trimix July 10

Post Edited (reachout) : 8/15/2010 9:49:23 PM (GMT-6)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 8/16/2010 8:32 AM (GMT -6)   

Given my well known and self-admitted biases I was a little hesitant to post on this thread but I just can't resist.  Basing medical decisions on verbal advice from an insurance salesman is pretty much the same as asking your postman to conduct your DRE...you get what you pay for.  David and Fairwind have it right, IMHO.

Many insurance companies will insure at 1 year post RP with .1 PSA and at 2 years post-radiation with .5 PSA.  It has to do with the odds of success and they are measured differently with the different treatments.  It has nothing to do with the relative cure rates.

Tudpock (Jim)


Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/16/2010 5:09 PM (GMT -6)   
I hope that no one who read my post believes that we based our decision for RP on the insurance agent's input. That conversation was but a tiny anecdotal piece of the massive information we have been gathering since July 22nd when we learned the diagnosis. I found that tidbit particularly interesting and felt it had meaning for my husband's situation. It was not intended to advise or sway anyone else but I thought it was worth sharing.

After doing what I considered due diligence - we were still undecided. In my opinion, the phone call from the insurance guy was well-timed and the information provided by insurance agent helped make our decision easier. We were already leaning in that direction after reading, researching, talking to other PCa patients, finding out the meaning of the biopsy test results, consultations with two urology practices, and Allegheny General Hospital prostate cancer center in Pittsburgh. I think it is a bit unfair to classify this as "Basing medical decisions on verbal advice from an insurance salesman" or equating it to having "some fat cat insurance man calling the shots".

Our family has been through quite a number of medical situations in which the overwhelming probability of success didn't pan out as predicted by known statistics. For starters, my husband could be the poster boy for how not to get colon cancer. If you read the list of things to do and things to avoid and physical risk factors, he doesn't fit the profile. He ate very little red meat, had 6 to 9 portions of fruits and vegetables every day without fail, whole grains, no white bread, little sugar, not overweight, low blood pressure, athletic, no physical ailments, surgeries or hospitalizations since birth until age 56 when he was hit with colon cancer. Other than being male, he didn't have any of the other named prostate risk factors.

My son at 18 had an ameloblastoma tumor of the maxilla (upper jaw). Only 1% of jaw tumors are ameloblastomas....and less than 1 in 10 ameloblastomas develop in the maxilla. Given the less than 1/10th of 1% odds, what were the chances?

That same son had two failed ACL reconstructions in which the success rate for reconstruction using cadaver tendons is over 95%. When the first reconstruction failed 4 months into rehab, the surgeon who is an orthopedic surgeon for the Penn State U football team, was so convinced that the first failure was a fluke that the second surgery was also done using cadaver tissue. That too failed 4 1/2 months later. His case was then brought before a board of orthopedic surgeons that review tough cases....only one orthopedic surgeon had ever had something like my son's situation and that had been a long time in the past. A 3rd ACL reconstruction using my son's own hamstring was finally successful!

Later an enormously expensive and painful bone graft surgery utilizing my son's own rib to reconstruct his upper jaw and palette failed - in spite of assurances that the surgery had over a 94% rate of success.

When my husband was being treated for colon cancer, his cancer was Stage 2...plus a little. We were told that chemo & radiation after surgery only improved his chances for a cure by 4% or 5%. That's a small percentage....but if you are the one that it helps, it is 100%. Tim opted to do the chemo and radiation. We will never know if the surgery alone would have been sufficient but the fact is he is colon cancer free after 7.5 years.

My research with input from many sources has convinced me that for my husband surgery provides a "slight edge" for a complete cure. We have been on the wrong side of the less than 1% to 5% odds too many times to do less than what we have been told over and over again is the gold standard for treatment of PCa. We are well aware that surgery may fail to cure my husband and we might have to go on to other remedies.

I was hoping for feedback and glad to receive some. I appreciate the further explanation as to fluctuating PSA and percentages of cancer. Thanks to all.
Husband DX @ 64; 7.5 year survivor colon cancer; father had PCa @ age 65
04/09 - PSA 3.06 - retest in 6 mo
10/09 - PSA 1.55 Free PSA 7.74% - retest in 6 mo
04/10 - PSA 4.26

Biopsy 7/10
R base - 3+3=6 10%
R mid & apex - benign
R anterior horn - 3+4=7 20%
L base - 3+4=7 90%
L mid - atypical small acinar prolif
L apex - 3+3=6 < 5%
L anterior horn - 4+3=7 60%

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3889
   Posted 8/17/2010 11:39 AM (GMT -6)   
The PSA testing has done its job, it found the cancer early. Forget about that for now.

You need to focus on "Left anterior 4+3=7, 60%" That's the bad boy you are dealing with now..4+3 is very close to Gleason 8 and you don't mess with that...

You are correct in that statistical odds are informative but as an individual, do they apply to you?? Who knows?? The Partin Tables say there is a 30-40% chance that surgery will CURE me...My U-doc plus another outside medical oncologist I consulted with thought I should TAKE those odds because the alternatives were not as good, and, should the surgery fail, I still have radiation as a backup, which is effective 30% of the time..

Or am I BSing myself and simply allowing both surgeons and R-docs to enrich themselves at my expense..But if we all thought like that, we would all be dead in 3 or 4 years like cancer victims were in 1930....

Lets face it...If our cancer has metastasized, most of us will be dead in 5 years...If it has not, no matter WHAT treatment option we choose, we will in all likelihood still be here 10 years from now..That's how it looks to me anyhow...
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/17/2010 12:13 PM (GMT -6)   
Pipe,

I don't believe anyone really thought you would base a major medical decision based on an insurance agent. There are lots of us here, that had no symptoms prior to PC. I had been having DRE and PSA done since age 50 because I was suppose to by my GP. I have never had a positive DRE, never had any prostate trouble, no swellings, no urinary stream issues, not even a single UTI in my life, and no history of known PC in any part of my family. Like my uro says, someone has to be first, and more likely, there were cases, its jsut that the male relatives died of something else other than PC. Very common situation.

Yes, its hard to understand where ultra rare medical situations come from. I am a 3 time survivor of Porocarcinoma, an extremely ultra rare but malignant cancer. I had it twice in my scalp, and once in my lymph nodes in the neck. There is still so little known about this cancer. It took a total of 5 operations and 35 rounds of really horrific neck/throat radiation 10 plus years ago to rid me of it. I wasn't even considered cured until I hit the 10 year mark not long ago. At the time, I was one of only 38 known cases in US Medical History, and less then 300 cases in the world. Since I have had it, they have reduced the number of cases, because of better diagnosis. Now, with me having it in the scalp, I was one of only six known cases in the entire world. Go figure that one out. My medical oncologisit had a woman patient with the same cancer but on her thigh, with two patients, at the time he was the world's expert on this cancer. No common connections could be found between this woman and I . Unfortunatley, she died of hers a few years ago. There will probably never be an answer for how that ultra rare of rare found its way into my body.

At the time, there was no known cure, no chemo formula, so wide margin surgery, including extensive plastic surgery on my head, and massives amounts of "old"school radiation were used in hopes of slowing it down or killing it. In my case, it seemed to have worked. Now, like all the other men here, I have been in for a tough ride with my prostate cancer. Its a mean cancer and often doesnt play by any rules or logic.

Good luck to you and your husband as you continue to sort things out. Sounds like you are doing all the right things in the process.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39

Post Edited (Purgatory) : 8/17/2010 11:16:15 AM (GMT-6)


pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/17/2010 4:54 PM (GMT -6)   
Purgatory - I think you have been through H*LL - I don't think you'd suffer as much as you have in Purgatory - maybe it's time to change your user ID....

You have my deepest sympathy for all you have gone through with that ultra-rare cancer and all you continue to go through with the second occurence of this horrible disease. I read your latest updates and can't even imagine how devastating each set back has been for you and your wife - to say nothing of the pain you have endured.

My younger brother had bladder cancer last year. I was with him for two of his surgeries as well as chemo for bladder cancer which all involved catheterization. I was aware how painful that was for him. I can't even imagine how painful your prolonged difficulty with catheters has been.

I used to think that you could bet on a 90% probability - I longer believe that.

Fairwind - You have more or less answered a question that I was thinking about but hadn't asked yet. With the mix of Gleason scores....is the 4+3=7 the one that gets put in on the Partin and Han Tables? Does that one result outweigh the two 3+4's and the two 3+3's in terms of predicting outcomes?
Husband DX @ 64; 7.5 year survivor colon cancer; father had PCa @ age 65
04/09 - PSA 3.06 - retest in 6 mo
10/09 - PSA 1.55 Free PSA 7.74% - retest in 6 mo
04/10 - PSA 4.26

Biopsy 7/10
R base - 3+3=6 10%
R mid & apex - benign
R anterior horn - 3+4=7 20%
L base - 3+4=7 90%
L mid - atypical small acinar prolif
L apex - 3+3=6 < 5%
L anterior horn - 4+3=7 60%

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3889
   Posted 8/17/2010 6:49 PM (GMT -6)   
".is the 4+3=7 the one that gets put in on the Partin and Han Tables? Does that one result outweigh the two 3+4's and the two 3+3's in terms of predicting outcomes?"

Unfortunately, yes....You base your treatment on the WORST biopsy result. Many get a second opinion on the biopsy from a recognized expert pathology lab, just to be sure those numbers are right..
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..
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