Low PSI but advance cancer

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ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/25/2010 8:25 AM (GMT -7)   
Has anyone had re-current cancer with a low PSI (under 1) but an agressive tumor.
PSI 34  at age 47 Gleason 4.5+4.5=9 in 2005
Prostate removal 2005
Hormone Therapy since
3.5" tumor found 4/2010
Chemotherapy treatment (not working, tumor still growing)
To start Radiation Therapy 8/2010
The tumor was found by my general practitioner not my Oncologist.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 3768
   Posted 8/25/2010 8:47 AM (GMT -7)   
Ahiinc,
this doesn't make sense, If you had your prostate removed then where was the tumor found? A 3.5" tumor is very large, larger than a prostate. A tumor that large would give off a psa number much greater than 1. Can you please supply more information? large tumors with low psa are one indication of a varient.
JohnT

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
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Date Joined Jul 2010
Total Posts : 2368
   Posted 8/25/2010 9:02 AM (GMT -7)   
Some PC, the real nasty aggressive stuff, can mutate to the point it no longer resembles normal prostate tissue and it stops producing any PSA...

ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/25/2010 9:09 AM (GMT -7)   
JohnT
After removal in 2005 my lymph Nodes were still described as cancerous. However the Lupron/Casodex kept my PSA low (always under 1.) I was shocked when my General practitioner told me I the cause of my pain and other symptoms was a 3.5" tumor in my abdoman. I still have no idea why, but my oncoligist told me the PSA test results will not necessarily indicate a tumor. I was told the tumor is from the Lymphs. Still in shock aver the diagnosis and not asking the right questions I guess. I had become quite comfortable over the years with my treatment and a steady, low PSI. I was blind-sided by this. I'm confused and frankly quite scared.
SteveC

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 598
   Posted 8/25/2010 9:11 AM (GMT -7)   
Fairwind is right; Walsh writes about this in his book; Catalano has a little on this in the FAQ's on the website. Catalano encourages annual DRE's as well as PSA tests, since these nasty ones often show up first as small lumps in the prostate bed and are palpable.

ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/25/2010 9:25 AM (GMT -7)   
Glad I stumbled onto you guys. My wife (who had always done the research and worrying for me and kept me current and informed) had died Feb/2010 of Lukemia and I really have been lost the last 3 months or so. If nothing else this looks like a good way to stay connected

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/25/2010 12:38 PM (GMT -7)   
You can have your pathology slides (now in storage)re-reviewed by experts like Bostwick or Oppenheimer whom do ploidy analysis on the pathology samples(3 types of dna structures possible, it does make some differences) and are familar with PCa variants (24 known now). If you have ultra low psa and chemo and other drugs are ineffective, it is worrisome. You should hire a specialist onco-doc like these types: Dr.Sartor, Myers, Scholz, Lam, Volgelzang, Leibowitz and there are some other reknown types. They have seen variants and all scenarios, you might respond to alternative drugs, they should know: estrogenics like DES, Leukine, Thalidomide (combo maybe), Abiraterone is in clinical trials, and other options, something may have value to use. I would not wait to long on looking at alot of choices that exist.  (www.hrpca.org  see treatments-drug protocols)
 The radiation being likely to handle the tumor??  How was it detected and what else do you know on this????
 
Ploidy info:  www.prweb.com/Releases/2007/10/prweb564967.htm

If you want to read about variants I can get you a link (not certain you have a variant), only a few are more worrisome situations and it is more rare of course to find one with such. Start studying is my words of wisdom. You need expertise at this level.

Post Edited (zufus) : 8/25/2010 12:50:57 PM (GMT-6)


proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 598
   Posted 8/25/2010 1:09 PM (GMT -7)   
to Zufus -

for people like me who are post surgery and haven't yet had biochemical progression, is there any value in getting tested for the DNA variants that are likely to make the cancer more aggressive? I asked my doc this and he said "no" -- that the predictive power of the DNA information is not good enough yet to use to make individual treatment decisions. But it seems that if someone had one of the bad DNA variants, that one might go for a more aggressive approach even in the absence of biochemical progression. Have you heard of docs who are treating this way?
DX at age 54 12/2009
Initial clinical profile: PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: 6 of 14 cores positive, 10% of length positive
TX: Robotic assisted RP 2/2010 by Dr. Peter Carroll at UCSF
Pathology: pT2cNx / Gleeson 3+4 / SM- / SV- / EPE- / Tumor vol 7% / prostate vol 40cc
PSA - post-op 0.01

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/25/2010 1:31 PM (GMT -7)   
Yes we have heard of docs like Dr. Strum whom has mentioned such and why he and Dr. Epstein disagreed on the value of ploidy testing and Strum recommends Bostwick and Oppeheimer and a German guy that is fabulous he says(for ploidy useage). Says it can make a difference to some onco docs and Dr. Strum analyzises way more overall factors than most docs and used to post on P2P (free advice on PCa cases, usually those whom failed treatments somewhere else, they have archives) , also oncos like probably Myers, Scholz and some others would find this probably useful, as to what drug therapies may have more value for a patient or possible duration or necessary combos to add a boost to them.

In the future this information will be more valueable. Not only DNA ploidy but PCa variants might be identified that were missed by average pathologist. (I contend that happens...no proof). Some of these variants do not respond well to hormone therapies, e.g.  'small cell' PCa.
 
Variants (old list of 18, 24 exist now):
Hey I am not entending to burst anyones bladder with scary stuff, just be aware of how complex this stuff might get. The variants are rarer to occur.

Post Edited (zufus) : 8/25/2010 1:48:04 PM (GMT-6)


An38
Veteran Member


Date Joined Mar 2010
Total Posts : 995
   Posted 8/26/2010 4:44 AM (GMT -7)   
There was someone here called Reinhart  who had a problem I think with large volume PC with low PSAs. I don't know if this helps as I am not sure if this has direct parallels.
 
http://www.healingwell.com/community/default.aspx?f=35&m=1537898

Regards,
An

Post Edited (An38) : 8/26/2010 5:17:21 AM (GMT-6)


ahiinc
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/26/2010 6:14 AM (GMT -7)   
Thanks all, I have a lot to learn. Zufus, I would like to learn more about variants. A link would be helpful. Info on these specialists would also be helpful. Where do they practice?
STeveC

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 3768
   Posted 8/26/2010 10:05 AM (GMT -7)   
Steve,
You can Google any one of these doctors and get contact information and background.
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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/26/2010 10:19 AM (GMT -7)   
The variants (18-this is the old list, link for 24 types???)
www.webpathology.com/case.asp?case=23  (years ago posted at Bostwick labs website)
www.prostate-help.org  (has a section therein dealing with about 5 variants w/info)

You can google any of those oncology docs and find info and where they are at. Dr. Scholz is in California Marina Del Ray (fyi).
Dr. Scholz www.prostateoncology.com  
Dr. Leibowitz www.docotorleibowitz.org  
Dr. Strum www.pcri.org  (retired now, info still abounds, has great book The Primer)
Dr. Myers  www.prostatepointers.org/cmyers
Dr. Labrie  "                      "            "/labrie   
Dr. Barken "                      "            "/barken
Maybe try this with after the slash any doctors name, pointers know most familar names

Pathology guys (websites): www.bostwicklaboratories.com  (Bostwick)
www.prostatelab.com  (Oppenheimer)
 
Makes the Twilight Zone seem like non-fiction in comparison  (LOL). I have humor, so hope it is addicting for curing the blues. smilewinkgrin

Post Edited (zufus) : 8/26/2010 10:37:06 AM (GMT-6)

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