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Old Sailor
Regular Member


Date Joined Aug 2009
Total Posts : 208
   Posted 9/16/2010 5:12 PM (GMT -6)   
Had PSA today and is 0.47.  It was 0.27 on 3/29/10 before I started 38 sessions of IMRT completed on 4 June.  Uro not as concerned as Rad Onc who says if December PSA is not lower than .2, we need to consider HT.  Uro and Rad Onc at Mayo stated again that Gleason 8-10, regardless of path report, is a very different and difficult animal.  Here is info he gave me "start IHT with 7.5 mg of leupron until PSA is undetectable on two consecutive months.   If PSA then rises for two consecutive measures, 7.5 mg of Leupron or equivalent should be used again.  Wondering what the HW folks think.  The Old Sailor
Dx 07/09 Age 67 - 28 core saturation biopsy w/5 positive (2 gleason 8, 2 gleason 7, 1 gleason 6)
RRP 8/13/09 Mayo Clinic Jacksonville

Path report upgraded gleason to 4+5=9

Negative margins/extraprostatic extension/seminal vessicles/ lymph nodes but perineural invasion present.

Two month post surgery PSA 0.022

Five month post surgery PSA 0.081

Seven month post surgery PSA 0.190

Eight month post surgery PSA 0.217

Started 38 sessions IMRT at Mayo Jacksonville on 4/12/10, completed 6/4/10. Few side effects except urinary urgency and frequency during the day and some rectal discomfort near the end of therapy.

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 9/17/2010 3:51 AM (GMT -6)   
We think we have our fingers crossed that the December test will come out better.

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 9/17/2010 4:39 AM (GMT -6)   
Hello Sailor, Hope you never need the HT. I also just had a recurrence of PCa after RP. All of the Drs that I saw, 3 medical oncolgists and 1 rad oncologist and my uro all recommended HT concurrently with SRT, but they all differred in how long I should be on HT 3 months, 6 months, one year and 2 years. I decided to do with one year. I have been on HT for 3+ months now and will be done with SRT next week.

There was a study done by the Urology association that should significant benefits of added HT for 2 years to RT for high risk men like us. Try googling it, it's interesting. BB
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10 .50

April 10 MRI and Bone Scan show lesion on lower spine, false positive.

Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July

psa July 10 <.01 HT at work

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 9/17/2010 10:53 AM (GMT -6)   
Sailor, threads like this greatly trouble me...I'm about a year behind you on the same journey..My path report was worse than yours...I'm beginning to wonder if surgery + radiation + castration (ADT) was the best choice for guys like us..There ARE guys on this forum that have beaten back the Gleason 9 monster, so I guess all you can say is it was worth a try..But I have a feeling the BEST option for us would have been ADT right from the get-go because in the final analysis it will turn out to be the most effective therapy of the three when it comes to extending our lives.. It's all about percentages and those percentages vary greatly depending on who published them...

Is surgery + radiation + ADT the best for me (and you) or is it the best treatment for the Medical Establishment ?? Why would they recommend a $850 orchidectomy when they can justify $150,000 worth of "curative" treatment even though the chances for a "cure" are less than 50% for guys like us??

But anyway, here we are, and all we can do is play the cards we are dealt...Old Sailors and Fairwinds have to stick together..Best of luck on this voyage my friend..
Age 68.
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 age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

John T
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Date Joined Nov 2008
Total Posts : 4229
   Posted 9/17/2010 11:25 AM (GMT -6)   
I think that Fairwind makes a good point. I know of many people with high risk stats that have just gone immediately to HT and all have had good results, 10 or more years. The biggest difference between HT and castration is that you can take a holiday from HT for a few years between sessions and everything returns to normal during the time off. Casteration is permanent, but the least cost method.
Acccording to the most experienced Oco docs, the earlier you start HT the better, as it works the best when the cell popluation as at its lowest and hasn't had a chance to mutate. I know there is some disagreement about this, but it makes a lot of sense and there is data to back it up.
I think there is a major difference in protocols. Mono therapy, Lupron alone, may not be as effective as triple blockage. The key to HT is the monitoring. You have to get psa to a level of .05 and keep it there for at least three months. Most doctors just give you a lupron shot and see you again in three or 6 months. You have to be tested monthly and testerestone levels checked to see if it is working or dose needs to be adjusted or new meds added. I just see too many patients just take a lupron shot and go on their way. This is not the way to administer HT. Especially for older patients this is a very accetable option as you don't have to deal with the side affects of surgery and salvage radiation along with HT. This is the triple wammie given that most high risk cases will reoccurr.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 9/17/2010 1:03 PM (GMT -6)   
As usual, great post John..Yeah, an HT vacation would be nice, and I think it works for many guys with lower Gleason scores and guys who simply could not do surgery or radiation for whatever reason..But for us G-9 guys who have failed primary treatment I don't know if a HT vacation is a realistic expectation..Two docs have told me that at 68, after 2 years on Lupron / Casodex/ Avodart it seldom "comes back".. By the time testosterone levels return to a level that sparks libido, the PSA has also signaled it's time to get back on treatment...Vacation over..You look at page 474, figure 12-2 in Walsh's book, you can see few men have time for very many "vacations"...40 and 50 year old guys will have a completely different outlook on this than 65-75 year old guys...

Zufus, an outside the box type of guy is having great success with DES, which accomplishes the same goal as Lupron but at a fraction of the cost..In addition to lowering testosterone levels to the castrate level, it seemingly has an added benefit, PC does not like estrogen at all, making DES very effective...yes, it has increased risk, but when you look at that chart on page 474, that risk becomes acceptable..

My medical team assumes I will accept their recommendation of adjunct RT & HT as soon as possible "just to clean up whatever cancer that got left behind"..Well that SOUNDS good but I don't think the statistics back it up...And before I submit to RT, regardless of whatever my PSA may do, I'm going to do some heavy research and thinking...
Age 68.
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 age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 9/17/2010 1:23 PM (GMT -6)   
Fairwind:
 
We had a video presentation from Dr. Scholz (one of the heavyweights) at our Support Group meeting last night.
 
It sure seemed to imply that IADT3 is quite realistic for most men in your situation. They did not seem to distinguish by age.
 
Mel (who is probably following in your path)
 
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

Old Sailor
Regular Member


Date Joined Aug 2009
Total Posts : 208
   Posted 9/17/2010 2:11 PM (GMT -6)   

Fairwind, I also question as you if surgery+srt +ht is the best protocol especially for us "older" Gleason 9 guys.  I actually had a feeling when going thru the SRT it was not going to improve my situation because of Gleason 9. Once my psa became detectable, straight to  HT might have been the best course of action. I strongly recommend reading Dr. "Snuffy" Myers book ($25.00) who recommends triple HT + diet for therapy.  He is a urologist and cancer survivor so very credible.  I think all stats related to Pca should differentiate between Gleason 8-10 and all other Gleason scores. For example, latest stats show 5 yr survival for PCa at 95% but of the 5% that don't make it, I'll bet most are Gleason 8-10 eventhough stats show that Gleason 8-10 comprise only about 20% of newly diagnosed Pca. Me thinks bottom line for Gleason 8-10 is not "if" cancer will recur but "when" so going straight to HT might be the best course of action. Your right Fairwind, we High Gleason guys must stick together and if we are fortunate to get 10 more years (with HT), that ain't bad. I sincerely hope you will be one of the Gleason 9 guys that the surgery will fix for a long, long time. 

BB - I will read the Uro publication, thank you.

John T. - excellent point on getting a lupron shot and "see you in a couple of months."

You guys  have a superb "cut of the jib" and are excellent "shipmates." Old Sailor 


Dx 07/09 Age 67 - 28 core saturation biopsy w/5 positive (2 gleason 8, 2 gleason 7, 1 gleason 6)
RRP 8/13/09 Mayo Clinic Jacksonville

Path report upgraded gleason to 4+5=9

Negative margins/extraprostatic extension/seminal vessicles/ lymph nodes but perineural invasion present.

Two month post surgery PSA 0.022

Five month post surgery PSA 0.081

Seven month post surgery PSA 0.190

Eight month post surgery PSA 0.217

Started 38 sessions IMRT at Mayo Jacksonville on 4/12/10, completed 6/4/10. Few side effects except urinary urgency and frequency during the day and some rectal discomfort near the end of therapy.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/17/2010 2:18 PM (GMT -6)   
Fairwind- I thought I had read Walsh's book years ago, well maybe I thought I did (lol). I just checked it out of the library and was very suprized how overall decent it is, especially since it was 2001 dated. He actually is more of less endorsing using DES 1-mg, when likely 99% of uro-docs would say otherwise (maybe overstated-lol). The Journal of Urology article of 2003 Nov. says it is safe and very effective, having been a user for years...might be safe-duh! (I assumed the risk)...it has outperformed ADT3 and I have the stats and psa history to prove real results..thus far). I would say no side effects (e.d. and lower T is a given), occassional breast tenderness if you bump something, otherwise similar to taking no drugs at all...makes ADT3 look like a dance with the Iron Maiden in comparison. Did my 2 yrs. of ADT3 and made it through, but don't wish to revisit that.

I like Walsh's book it covers even mind-body and mentions the value of faith and groups, newer therapies..and as for the surgery aspects this book helps explain why he rules in that venue.

Mel- that probably was a PCRI presentation, did it include Strum and Myers etc.? They have some great conference meetings and discussions we can witness. Mel is this an UStoo Group thing or what??
 
Old Sailor-sorry for the extra input, it might be interesting reading for you too.  I am at year 8.5 and my stats are below.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Post Edited (zufus) : 9/17/2010 2:21:50 PM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 9/17/2010 2:31 PM (GMT -6)   
Z:
Yeah, it was a PRCI gathering.
 
I think he was the only presenter. They showed 70 minutes last night, it was actually longer, but we wanted to get to some discussion. I think our support group leader said the tape (well...DVD) was free. It cost $5. S/H.
 
Incidentally, I think he showed some data that indicated a delay in starting HT isn't all that bad. I can't remember all the details. So, regarding the comment about hitting it early, the data may show that it isn't necessary.
 
Overall, it was a very encouraging talk. The emphasis seemed to be that VERY few of us will die of PC (with it, yes). In fact, he had a chart with 4 other cancers (can't remember all but it was lung, pancreatic, stomach, and one other). All of them are so much more deadly (pancreatic is 4 months). Also, he had data about recurrences. That's where PC is the one to have. We can live 5-20 years after a recurrence. For the other cancers, BAD NEWS!
 
With PC, as you know there is low risk, intermediate risk, and high risk. Those catgory definitions are changing, too. I think they now also have a 4th category: Very High Risk. I guess a 5th category would be Dearly Beloved We are Gathered Here.
 
Anyway, even high risk has a rather long life expectancy.
 
Mel
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/17/2010 2:40 PM (GMT -6)   
zufus,

contrary to some's opinions, walsh's book is still an excellent primer to those new to PC. Of course he's a famous surgeon, doesn't try to hide that fact. but the book all in all, gives a good and even presentation of most of the PC related issues covered. I understand a newer edition will be out soon, haven't verified it.

if someone was only going to read one book pc related, and thats it, it would still be my choice for them, because of the vast variety of subject that it covers. yeah, there are better books on advanced cancer out there, and better books for out of the box thinking, some of the very ones reccomended right here by our brothers.

i read walsh the first time, cover to cover in 2007, a full year before my dx. if nothing else, it prepared me for what lie ahead, so when the terrible day came with my pc dx. i wasn't in shock and awe, and i was at least familiar with the basic treatments and terminology of PC.

I am glad you see the book having some good value.

david
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 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/17/2010 2:54 PM (GMT -6)   
Mel- sounds good you got into a group, you can see how patients have different journies and talk about it all, and have presentations that are useful to you or get more learning. You can always try any HT therapy and abort it after awhile if you wish to and try another one...this area has less rules than you might think (of course you may have to switch docs to get what you want to try). This is where Rod Serling gives a cameo as to entering the twilight zone of PCa. (lol)

Purg-Hope all goes well for you amigo maybe you ship just came in, hope so.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 9/17/2010 3:12 PM (GMT -6)   
Hey Zufus, go back to the library and get the 2007 revised edition..I needed an extra copy and found one on eBay for under $10 delivered when I was back east this summer. My treatment center gives them away..

The revised edition has big (little?) upgrades to the radiation and chemotherapy sections..I have not read the older book..
Age 68.
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 age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 9/17/2010 7:24 PM (GMT -6)   
Some really good data here:

http://www.prostate-cancer.org/pcricms/node/141
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !
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