HealingWell
Search Close Search

Latest Update - At the 5 Year Mark

Chronic Illness Forums
>
Prostate Cancer
>
Latest Update - At the 5 Year Mark  
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/16/2009 10:29 AM (GMT -7)
Just had my six month PSA test done up at UVA Medical Center. Good news again,,, not detectable!!!! So, i've reached the 5 year mark and will now only have to go once a year for PSA testing. It's been a rocky road as far as the ED goes,,, still taking Levitra with some good results but not all the time. I did meet with a rep from Augusta Medical who showed me their vacuum device. It looked much better then my older Osbon Erectaid pump. Cost was $495 though,,, good grief. What I'll do for sex!!!! Hope everyone is doing ok considering the issue we all face!!!!

Axe
Axe - 62
Diagnosed - October, 2004 - PSA 3.3 up from 2.4
Gleason 3+3 = 6
T2A
DaVinci Surgery - January, 2005
UVA Medical Center
All PSA's at under 0.02 since
Three Year PSA Test - 0.02
Four Year PSA Test - 0.02
Five Year PSA Test - 0.02

Posted 12/16/2009 10:46 AM (GMT -7)
Axe,

The five year mark with zeros, that is great. You have reached a milestone that most of us can only hope that will happen. Looks like you were about my age when you were dx. Very happy for you, love reading about sucess stories here at HW.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16

Post SRT PSA:
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 in place

Posted 12/16/2009 11:16 AM (GMT -7)
Great news, love to see those longterm guys checking in. 5 years- that's great as far as PSA. Not so good with ED, sadly. I am guessing you have been thru the penile injection route sometime before? I have looked at the Erectaid, along with a couple of other regular pumping ones, and found that I much prefer the Bonro Vacurect ($195), even with the problems it gives me with pulling in scrotal tissues, etc. Just a suggestion, if you want to look it up.

I wish you continued improvement and a lifetime of zero's....
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN

Posted 12/16/2009 11:47 AM (GMT -7)
James, haven't tried the penile injections or Muse at this point. I guess that may come next. I'll look at the vacuum device that you are using. Certainly it is better priced.

This board means a lot to me. I was on it quite regularly early on and found it to be a great source of information and confidence building. Keep up the great work!!!!!

Axe
Axe - 62
Diagnosed - October, 2004 - PSA 3.3 up from 2.4
Gleason 3+3 = 6
T2A
DaVinci Surgery - January, 2005
UVA Medical Center
All PSA's at under 0.02 since
Three Year PSA Test - 0.02
Four Year PSA Test - 0.02
Five Year PSA Test - 0.02

Posted 12/16/2009 5:32 PM (GMT -7)
Great news on the 5 year mark

Mika
age at dx 54 now 57

psa at dx 4.3

got the bad news 1/29/07

open surgery Duke Medical Center 5-29-07

never more than 2 pads

ED is getting better

the shots work great, still can't give them to myself

two years of zero's

Posted 12/16/2009 9:39 PM (GMT -7)
Your post is so very important to the rest of us that are not nearly as far down the road. Thanks for posting and congrats. What a great time to get such news.

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.

Posted 12/17/2009 4:47 AM (GMT -7)
I am so glad you posted your 5 year scores. It is important that we all see that it is possible to maintain a zero for years. Merry Christmas AXE and thanks for sharing.

peace and love
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

Posted 12/17/2009 7:27 AM (GMT -7)
Thanks for sharing AXE...and congrats on a 5 yr mark of zeros. Guess Dale will have to give you your silver certificate zero club membership card now.
You are beating back cancer, so hold your head up with dignity

Les

Age 58 at Diagnosis

Oct 2006 - PSA 2.6 - DRE Normal

May 2008 - PSA 4.6 - DRE Normal / TRUS normal

July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C

Robotic Surgery Sept 18, 2008

Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc

Seminal Vesicles and Lymph Nodes clear

Positive Margins Right Posterior Lobe

PSA 5 week Oct 2008 <.05

                   3 month Jan 2009 .06

                   6 month Apr 2009 .06

                   9 month Jul  2009 .08

                 12 month Oct 2009 .09 

Posted 12/17/2009 8:23 AM (GMT -7)
Hey Axeman,
I have the Augusta Pump. Thankfully most of it was paid by insurance. No question about it, the Augusta is a high quality unit. But I figure 70% of the cost goes to billing, sales, registration, customer service, warranty.
If it was all my money I would not have paid it. Negative pressure is still negative pressure. It pumps up but the second I hit the release my wood turns to sawdust. Sadly, there is no magic.
Hey here's an idea... I'll use mine on Monday, Wednesday, and Friday and you can use it Tuesday, Thursday, Saturday. We will trade off on Sundays and Thanksgivings and Christmas. Sounds like a custody hearing. On second thought... eeewwww.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
. 9/27 2 months: Still 3 pads per day.
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day Experimenting with Nyquil.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.

Posted 12/17/2009 8:27 AM (GMT -7)
I am lucky that I don't have very much in the way of ED, but I had expected to and so before my operation I had done some research into VEDs etc.



As I live in Holland there are plenty of sex shops near where I live and I had a look at the types of penis pumps etc for sale.



What is the difference between the types of pumps in sex shops and pumps like the Bonro Vacurect and other mentioned here as the price difference is collosal? When I saw $495 I went and checked a few prices. There are pumps in sex shops for about $50.



I wouldn't want to think that there are guys buying them from (online) sex shops who are wasting their money because those pumps don't work, but nor that guys are spending loads of money on expensive models, if they could get results by spending less.



Alfred
Posted 12/17/2009 9:06 AM (GMT -7)
good news on the 5 year mark -- congrats!!
Age:  63

Biopsy May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason score 3+3.

Considering all the controversy about whether action is needed or not (I could die with prostate cancer not from it), gave consideration to active surveillance.

After family considerations which I value most ("you should have this cancer out"), decided to have radical retropubic prostatectomy.

Operated on Oct 23/09 in London, Ontario.  Excellent surgeon.

7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.

Nothing of concern in the pathology report. 

First followup PSA and visit in Feb 09.      

Post Edited (skeener) : 12/17/2009 3:24:13 PM (GMT-7)

Posted 12/17/2009 11:01 AM (GMT -7)
Alfred, the differences that I see are sturdiness 9hticker plastic, better quality moving parts, and built to medical grade standards, whatever they are. The main point of any VED is the vacuum safety release valve, that will not allow users to exceed a certain medically safe vacuum. Some of the cheaper sex pumps have all of that, some don't, but I know several of the guys here use the cheapies in the $30 to $60 range, so I suppose it's buyer beware. Most say they are satisfied with them, some others say the got junk and they didn't last long. I think the main reason cedrtain pumps are so expensive is also they are on the list of medicaid and most insurance companies of approved products, are prescription required for payment, and the strate of the art versions. I know that you can find non-prescription versions of some of them for half the price, so I think it's built into the system to charge more if insurance or medicaid is paying for it. Just my opinion, of course....others may vary...
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

Posted 12/18/2009 4:43 AM (GMT -7)
Thank you James

As I said I don't need a pump at present, but I had always planned that I was not going to stick little Alf in anything even slightly risky. You get what you pay for I guess!

I'm snowed in in Holland and my wife is snowed in in England!

Alfred

Posted 1/12/2010 11:37 AM (GMT -7)
Thanks to everyone's kind words on my 5 year PSA score. I'm still researching the Augusta Medical vacuum pump. There are two versions, one sells for $495 and comes with a 90 day money back guarantee and a life time warranty. There is also an OTC version that sells for $199 and has a one year warranty. There really isn't much of a difference between the two devices that I can tell. I did find the OTC version for sale on ebay at $89 plus shipping so that is what I will probably go with. I've used the Osbon Erectaid with moderate success. It's just very cumbersome to use and falls apart as you try to contact all the hoses and everything to the cylinder.

If I do end up getting one i'll give a review of it on here in a while. I'm hoping for success!

Axe
Axe - 62
Diagnosed - October, 2004 - PSA 3.3 up from 2.4
Gleason 3+3 = 6
T2A
DaVinci Surgery - January, 2005
UVA Medical Center
All PSA's at under 0.02 since
Three Year PSA Test - 0.02
Four Year PSA Test - 0.02
Five Year PSA Test - 0.02

Posted 1/12/2010 4:06 PM (GMT -7)
Axe,  Great news on your 5 yr Zero Club membership.  I'm 1 yr behind you and looking forward to reaching the 5 yr milestone.

As far as the ED is concerned, you really, really should look into injections.  If you get occasional results with Levitra I'd be willing to bet that you would be a 100%er with Tri or Bi-mix.  Not a lot to loose by trying and if it works for you  like it does for many of us, you'll be kicking yourself for not trying it years ago.  Best of luck to you in the new year and again congrats on the continued Zeros.

Allan 

Dx PCa age 54. Jly 05- PSA 8.1 Sept 05- PSA 10.7

Sept 05- Biopsy  9 of 12 cancerous, Gleason 3+3=6, T2

Bone scan and cat scan showed hot spot on hip bone.

Oct 05- bone biopsy, ouch.  benign , no cancer in bones.

Nov 05- PSA 15.4 Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, by Dr. Robert Stevenson. 100% continence at 3 months. ED- Tried the big 3 pills with no results. Feb 06-Started VED, worked, but painful with constriction rings. May 06 started Trimix injections.

ED appears to be perminant but doing great with Trimix.

PSA remains undetectable.

Posted 1/12/2010 5:05 PM (GMT -7)
Hi Axe

You are my hero. Hope you have many more

Mika
age at dx 54 now 57

psa at dx 4.3

got the bad news 1/29/07

open surgery Duke Medical Center 5-29-07

never more than 2 pads

ED is getting better

the shots work great, still can't give them to myself

two years of zero's

Posted 1/12/2010 5:16 PM (GMT -7)
Hi Axe,

Congratulations and thanks for letting us in on the good news. It gives hope to those of us that are still struggling with the beast. May your PSA be gone for the rest of your life.
All the best to you.

Magaboo
Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04

Posted 1/12/2010 5:28 PM (GMT -7)
AXE. Just looking at the post for today. I posted on 12/16/09. I have the Osborn pump and use is daily. New update last wk started injections. My Dr puit me on Cavaject. All I can say is ai wish I had done that months ago. Life is good again.

If you have questions you can e-mail me.

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.

15 months out injections Caveject (success)

Posted 1/12/2010 6:10 PM (GMT -7)
Axe,
I appreciate you posting your 5 year result. We don't always hear from long term survivors. Your post gives us hope.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1

Posted 1/12/2010 6:53 PM (GMT -7)
I'm envious as I hope to reaach your numbers in 5 years also. Good for you, and may the undetectables stay with you forever.

Bob
 AGE:58

 Dx: October,27(the day after my birthday)

 Psa 14.5

 Gleason:(4+3) 7 T1c

 Bone scan:Negative

 Cat scan: Negative

 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.

 Confined to prostate.

 DaVinci Jan. 19th, No lymph node involvement, all margins clear.

 8 week PSa <0.01

 Gleason downgraded to (3+4)7

 6 month Psa , 0.1 

 9 month Psa,  0.2  Doubled! Criminy!

 Started RT 10/28...one year since diagnosis.

Posted 1/13/2010 4:03 AM (GMT -7)
Good on you, Axe.

I hope you have success with your choice of pump.

Most have an issue with pulling in the scrotum.  The most expensive includes a guard to prevent this.  Some have a cone which facilitates ease of attaching retainer ring on to the cylinder.  Some have an outside sleeve that slides over the cylinder, which can be slipped down to push the retainer ring on to the penal shaft.  Otherwise, the ring must be released with fingers, with a little difficulty.  The more accessories included increases the price. 

Some accessories can be purchased extra.  All are pretty expensive.

        (Bear in mind that warnings are given Not to leave rings applied more than 30 minutes)

I've never had an opportunity to use it for actual sex, only experimental.  No partner since surgery.

I have little use for my pump.

I have tried injections.  about $80 a shot.  In my case, got only about a 5 out of it.  A stronger dose may have helped, more bucks.  Those are not uncomfortable or painful in any way as one may expect.

Good luck whatever your choice.

Agressive cancer, age 74, Jan. 2003, passed lots of blood, first symptoms.  May 2003, Radical Prostatectomy and Urostomy.  (Married less than 1 year, ended with this crap)

No signs of any recurrence.  Just horny for 7 years and no natural relief. My desires have not diminished and docs have no answer.  arrrggghhhh!  (At my age?  Thought it would be all over)  

My best goes out to you and all the others here for continued recovery.

Ed

 

Ed

Posted 1/13/2010 6:15 AM (GMT -7)
Greetings, Axe.  5 years is a very significant milestone.  Thanks for sharing the good news with us and giving all of us who are still in the relatively early stages of recovery hope for the future.  Always good to hear from you.  David

Diagnosed Dec 2007 during annual routine physical at age 55

PSA doubled from previous year from 1.5 to 3.2

12 biopsies - 2 pos; 2 marginal

Gleason 3+3; upgraded to 4+3 post surgery

RRP 4 Feb 08; both nerves spared

Good pathology - no margins - all encapsulated

Catheter out Feb 13 - pad free Feb 16

PSA every 90 days - ZERO's everytime!

Great wife and family who take very good care of me

✚ New Topic ✚ Reply

Forum Information

Currently it is Wednesday, February 20, 2019 2:12 PM (GMT -7)
There are a total of 3,042,405 posts in 332,456 threads.
View Active Topics

Who's Online

This forum has 163278 registered members. Please welcome our newest member, JasonE82.
146 Guest(s), 6 Registered Member(s) are currently online.  Details
Crispix, mattamx, JasonE82, island time, Traveller58, beatUC