Ohio State-Andrew no longer on this forum, has asked me to post his status update

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Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 6/27/2010 8:34 PM (GMT -6)   
Not here to get in the mix of why and hows of that happening,  I can understand the reasoning by moderators.  His journey and history with  PCa is not typical by any means and has been a wild ride until around Dec.  2008  or so.  First exposure to seeing doc with some issues, no psa test taken but he found later psa was high enough, should have been tested for  (this happens and shouldn't).  Later on with a higher psa gets biopsies and this part is unreal, the doc whom was supposed to do biopsies, got called away during the proceedure, it was found that he put an intern or non-professional doc in charge of finishing (he found this out). They got  1 actual biopsy, and bent the needle on the 2nd biopsy and stopped the proceedure!!!!  Talk about half a__ professional work, I have never heard of such things happening on a patient ever before. So, without clinical staging and knowing more realistically what he had, different docs wanted to do maxium treatments of their protocols on him. After reading some threads herein on this forum, he started to question about everything. He had no insurance which is a detriment to a patients health and choices.
He cancelled with one doc whom want to remove prostate, bladder and leave him in a state of unreal consequences and new plumbing, he mentions. He got in touch with PAACT group here in Michigan and Rick Profitt, got him set up with Dr. Fred Lee (at much reduced fee for uninsured patient) for his color doppler ultrasound method of detecting PCa, as to where, volume, and images to look at it.  Well Dr. Lee told him he apparently had one of the worst cases of PCa he has ever seen...I would say that is a big deal coming from him...many patient have seeked his skills, he invented cryo-therapy and used to perform that protocol on patients years ago.
Well I talked to Andrew and he decided to come up and see my oncologist doctor here in Michigan, and come to a PCa seminar type meeting that my onco doc puts on usually once a month at his own doing.  The onco-doc gives him some advice as his psa now is like  110 or so and yet he is not on any drug protocol yet, the doctors in Ohio would not put him on anything because he had no insurance money and did not follow their highly agendad protocol treatments.  Well the onco-doc took Andrews questions, even by various phone calls and answered them, even technically not even signed up as his patient yet.  Short time later doc mentioned a cheap cream for his catheter(tip infection area) that had been on for months and months (PCa grew around the tube and it wasn't coming out easily and didn't). Put him on casodex (Canada at less costs) and little later an older drug as good as proscar or avodart and costs a fraction of those (cheap drug). Onco doc mentioned that the catheter would probably fall out on its own after being on these drugs....this is exactly what happened. Boy was Andrew surprised and elated and found out he could pee normally after almost 6 months or so and did not have to got back to wearing that!! Can you imagine wearing the same catheter for 4 months or longer???? 
He has done so well on casodex, been on it over 1 yr. total (maybe  14 mos.+), went so well that he went off of it to try intermittent  useage and psa was found at  <.10  which is all they measured to in Ohio.  Well now recently been off casodex and the alternative proscar for about  6-7 weeks and new psa test just the other day is still  <.10 (less than .1).  That is pretty good news and response for a high risk level patient. So, he will monitor monthly or so and watch his psa history and may resume casodex or more likely he is talking about switching to other choices like: DES, or estradiol patches...which work little differently and have much less side effects and can work even against HRPCa, when casodex fails. He has decided he will not be able to tolerate Lupron (LHRH drugs) and so is passing on using them..his decision.
Right now he is ecstatic, feels much more normal, dropping weight instead of putting it on, feeling stronger now and has decent results to show.  Amazing that all the local docs were ready to bill the state or however they get paid for non-insureds for their given protocol, regardless of having a real proper assessment of his disease level...they pooh-poohed the color doppler and admitting they didn't know how to interpret results of it. Diagnosis using the pathology on one sample core (only sample actually extracted or taken) and some psa history. Couldn't run normal nomograms or Partin Tables on limited data, it was a hip shoot or crapshoot from the Ohio doctors that he saw.  This is why patients need to seek further opinions,  the patients best served interests should be first, Dr. Lee says worst case of PCa he has seen (verbatim to Andrew as he says it was).  He is totally pleased with his journey in the last year or so and currently living la vida loca.  Hope that lasts for anyone diagnosed with any level of PCa.

Post Edited (zufus) : 6/27/2010 7:38:56 PM (GMT-6)

Regular Member

Date Joined Aug 2009
Total Posts : 288
   Posted 6/27/2010 8:51 PM (GMT -6)   
Zufus, thank you for giving me an appreciation for what Andrew had to go through. This helps me understand a bit more about the nature and tone of his postings. I learned myself that pca has taken me places I have never been mentally and intellectually and that are difficult to express.

I wish Andrew the best and many, many trouble free years and decades.

Take care,
Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy, psa at 6th week salvage IMRT up to .4
Post SRT psa at 10 weeks (5/31/2010) down to .2

Veteran Member

Date Joined Jul 2009
Total Posts : 1267
   Posted 6/27/2010 9:07 PM (GMT -6)   
Zufus, thank you for sharing and I join in wishing Andrew "many trouble free years and decades."

Jake put it so well when he said, "pca has taken me places I have never been mentally and intellectually and that are difficult to express."

I have been very lucky, so far, that my challenges are far less than many face and yet they have stretched me to places I never thought I could go woithout totally falling apart. How my brothers, and their wives and daughters, cope with so much more do so, I don't know. I salute them all and I send a salute with my best wishes to Andrew.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 

Veteran Member

Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 11:47 PM (GMT -6)   
Hi Zufus,

Thanks for the update on OS (Andrew). He is lucky to have had your advice and counsel. I too am unisured but I found the doctors here to be willing to work with me on the cost. I am also glad that Andrew found a doctor who would work with him. Best of luck to Andrew and I hope his numbers remain good.

Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?

Forum Moderator

Date Joined Sep 2008
Total Posts : 4272
   Posted 6/28/2010 6:14 AM (GMT -6)   

Zufus, thanks for the update.  But...what did I miss?  Why is Andrew off the forum?

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"!

Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 6/28/2010 6:38 AM (GMT -6)   
Thanks for your replies I will mention such to him, simply on his own accord he crossed the line on good conduct towards someone else or two on this forum...why? Baffles me too, his own deeds in such placed him in jeopardy and he was warned prior too, so I am not surprised of the result. Regardless of our strong feelings or thoughts on PCa and other forum things, got to put that aside and make decent attempts at holding them to ourselves...may not always be easy for anyone, I know this.

I will hear from him as he calls me and knows that I am interested in his journey and updates. So may have more to say down the road.
Youth is wasted on the Young-(W.C. Fields)

Veteran Member

Date Joined Jun 2008
Total Posts : 1804
   Posted 6/28/2010 7:15 AM (GMT -6)   
Zufus, thank you for being such a good friend to Andrew. He has been through alot but I am so very glad that he is feeling well and happy with the course his treatment has taken. Please extend our (John and mine) best wishes to him that he continues on a positive course. And do let us know how he is doing.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!

Veteran Member

Date Joined Jan 2009
Total Posts : 2243
   Posted 6/28/2010 7:45 AM (GMT -6)   
Thanks for the status update on Ohio State. For the position he was in he has made tremendous strides and I wish him only the best. Jake was right, and add to that, cancer without insurance, and that will really take you to places that none of us would want to go.
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

Worried Guy
Veteran Member

Date Joined Jul 2009
Total Posts : 3739
   Posted 6/28/2010 8:05 AM (GMT -6)   
Zufus said...
Regardless of our strong feelings or thoughts on PCa and other forum things, got to put that aside and make decent attempts at holding them to ourselves...may not always be easy for anyone,

Considering what PCa does to our bodies and minds, combine that with hormones running high or low, and drugs and treatments not found in nature, it is not surprising that sometimes we might not always be model citizens.
I wish Andrew well. He taught us all about DD (Due Diligence).

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 6/28/2010 8:45 AM (GMT -6)   
I think it would be useful and helpful at this point, if some or all of our moderators, and perhaps even Peter, if time allows him, to make a statement here explaining what probably happened.

I don't think there's any need for official statements and explanations of the history of this incident. Anyone who has been here more than a week or has read the archive is aware of some of the issues involved in this situation. Rehashing them and explaining is unfair to the member and to the persons who have to enforce the rules. Suffice it to say, as zufus says, rules were broken, and it should come to no one's surprise that the rules are enforced. Great leeway is given, because of our cancer situation, but there are rules that must be followed. The moderators and owner goes to great lengths to allow for the widest exchanges here. The way a member gets banned is to be reported to the mods or the owner, for grievous actions, and the owner does the banning. This action isn't taken lightly by anyone. That Andrew is banned doesn't mean he can't be here. He can still read the threads. Banning only blocks one from posting. He still has the option of keeping in touch with email and the other options.

Post Edited By Moderator (James C.) : 6/28/2010 8:02:32 AM (GMT-6)

Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 6/28/2010 10:14 AM (GMT -6)   
Thanks David for the incite and info, he just cannot post apparently anymore. Decently gracious of you to hold your tone as you have done and not drag in comments. We all share a common enemy in PCa, that is the focus. So let's build on that for the betterment of all.
Youth is wasted on the Young-(W.C. Fields)

John T
Veteran Member

Date Joined Nov 2008
Total Posts : 4268
   Posted 6/28/2010 10:53 AM (GMT -6)   
I talked to Andrew a few days ago and what amazed me is that he feels that PC has been the best thing that has happened to him because it gave him a purpose in his life. He feels he has met a lot of amazing people on his journey, and now he must help others that were in a position similar to his. This is why he is so passionate about his positions about just not accepting what doctors tell you with out checking it out. He was given only a few months to live and now a year later his psa is <.1 and he is off all medications.

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.


Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 6/28/2010 11:34 AM (GMT -6)   

I agree with you. The enemy is PC, and its vicous and horrible enough in itself. I see my post got 90% censored, but I thought it was only fair to offer a glimpse of an explanation. I never mentioned a single name or a single episode, I tried to answer in a neutral generic way, so that someone new would understand what probably happened. My mistake, I am not a moderator, next time will leave those thoughts to the moderators.

The fight against PC will go on far beyond our combined lifetimes, and for generations to come. Speaking only for myself, PC has changed my life forever and a day. For me, things will never, ever be the same again, no matter how much I want it to be. All I can is survive, adapt and adjust, keep learning, keep asking questions, keep trying. The thought that PC could take away my life repulses me at the root level of all that I believe. I said this in my early days here at HW, that if PC takes me out, it won't be until after I have fought all I can fight. It will have to take me out without any cooperation from me.

And Zufus, your ability to extract the "out of the box" approaches, researches, new and strange drugs and meds, is outstanding. While it might not make sense to someone on a "normal" PC path, when things go terribly wrong for some, your words and advice might be just the medicine they need.

I appreciate your posts, even when I don't always understand them, and I respect your own personal fight and journey.

David in SC

Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17

Post Edited (Purgatory) : 6/28/2010 10:38:21 AM (GMT-6)

Veteran Member

Date Joined May 2009
Total Posts : 2692
   Posted 6/28/2010 2:04 PM (GMT -6)   

I too thank you for posting about Andrew. We truly wish him the best. I have no ill feelings toward him, but cannot say the reverse is true.

He has been through quite a roller coaster ride. Not sure I could handle what he has.
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

Veteran Member

Date Joined Nov 2008
Total Posts : 697
   Posted 6/28/2010 3:00 PM (GMT -6)   
Zufus, thanks for that explanation.

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1

Regular Member

Date Joined Jul 2006
Total Posts : 202
   Posted 6/28/2010 6:47 PM (GMT -6)   
Sorry to hear you won't be posting anymore Andrew.  I followed your story and enjoyed your posts.
Best of luck to you.
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.

Veteran Member

Date Joined Sep 2009
Total Posts : 664
   Posted 7/3/2010 9:38 PM (GMT -6)   
So…people can get the boot…that is really unfortunate. Admittedly some on this form constantly reply and hijack threads to the point that I ignore them, but to kick a fellow prostate cancer brother off… that is a different subject. Then we have others that are so informative. Take Casey59..I really wish he would post more often. Casey has a scientific approach to the subject of prostate cancer, and he utilized published facts, Casey isn’t the only person that I love to read he just came to mind first. I can understand the frustration that OS had, cancer can do that to a person. But, if that is the way the owner of this form wants things to be, I am not in a position to gripe. The service provided here is unbelievably valuable. I have found no other place with so much passion about this disease. You can see it all here. That is what’s so wonderful…all opinions are welcome. That is why I come here several times each day. In my own circle of friends (3 family members with prostate cancer) when we get together I always encourage them to check out this site, and I‘m always talking about things that I have learned. No, I would never want to see this “gift” taken down, so if it takes strict rules; so be it…I’m just glad that I’m not the one required to make the final decision on who gets to stay. So with that I’ll give a tip of the ol’ hat to the moderators…Thanks so much for your help! You have a very difficult job!

Veteran Member

Date Joined Nov 2009
Total Posts : 7269
   Posted 7/3/2010 11:46 PM (GMT -6)   
This is a moderated group.
Frankly, I think the moderators have been extremely patient and fair.

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!

Veteran Member

Date Joined Jan 2009
Total Posts : 2243
   Posted 7/4/2010 7:35 AM (GMT -6)   
They have been more than fair and when rudeness runs newcomers off all we have left are the same people. Tolerance and respect are becoming lost terms and notions in our culture and I would not want to encourage bad behavior.
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

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