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Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 1/27/2010 11:35 AM (GMT -6)   
I didn't know this forum existed. I would have posted long ago. I'm a 60 year old guy, in otherwise good health, whose ride on this roller coaster began last Sept. with a biopsy of Gleason 7, had robotic surgery November 4, released the next day, catheter out at 14 days, continence continues to improve, physical recovery very slow, some aches and pains, but mostly much fatigue and some emotional ups and downs. Pathology report showed Gleason 8 T3a, some breach of capsule but margins negative. Returned to uro/surgeon 1/26 PSA undetectable, and he assured me all my minor aches and pains complaints were very typical of this surgery and at 3-4 months out is where one can really begin to feel physically more like yourself again. I'm working with my primary care doc as well as my uro, both have the same data. My primary care guy's assessment is very optimistic saying that negative margins are a very good and meaningful sign and the undetectable PSA icing on the cake. My uro was much more sobering with discussions of stats of rates of recurrence in the future. He is ordering PSA's every three months, until then just go home, be patient continue to heal, take every three months as they come and if PSA goes up we will pursue other therapies right away.
All this seems very sensible. Unfortunately, I'm a born worrier(runs in the family) I can't quite figure out if I'm getting good news or bad news.
I've scoured the internet over the past few months and find it mostly just clinical, as well as self promoting or downright weird. I know these concerns may seem naive to you veterans on this forum, but I've seen some sage advice on these pages so I would appreciate your thoughts. Do I just try not to worry every day waiting for another shoe to drop. How meaningful are the negative margins and the undetectable PSA 3 months out after surgery? If my PSA were to rise, is that the end of the world as we know it, that things are back with a vengence, or is it more likely I merely move on to other treatments and other wise just keep living a normal life. Can these other treatments be curative or are they just plans B and C, etc.?

I've got a very supportive wife, family and employer, and I'm about a year away from retirement. I guess what I'm really asking is where am I in this continuing adventure and where can I expect to be going. Thanks to all.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 1/27/2010 11:48 AM (GMT -6)   
English Teacher,
First of all welcome aboard and glad you found HW. Sounds like your surgery went well and glad about your PSA. I guess some Dr's sugar coat things and others have little bedside manner. My wife used to tell me the worrying was like praying for the bad to happen, and I fianlly got what she meant. You can worry to the day you die, but that wont lead to happiness. Worrying can become habit forming, but a positive attitude can as well. All the positive encouragement you might get can be discounted in a minute if you allow it. Hope that you live life one day at a time and enjoy it fully, and if you find yourself worrying about something that hasnt even happened, refocus on something that brings you joy. I keep pictures of my grankids in my office and those pictures serve as my "attitiude buster." Reminds me to be grateful and not hateful. Best to you and your family.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/27/2010 1:00 PM (GMT -6)   
ET, first, welcome to HW, glad you found us, if late. smilewinkgrin

Yes, the Gleason 8 isn't what we/you would want, yes the negative margins are a positive, as is the zero psa so far. Really, the facts are that you can do little beyond your current course. Your doctors have a good plan in place, so I am sorry to say, you're gonna just have to accept that everything that can be done is being done, it appears. You're gonna have to sweat out those 3 months PSA tests. Maybe with each one, you will toughen up some, but the reality is you're gonna have to do them, there's no guarantees of the results, but the process will play out, worrying about it or not. I suggest that you decide that you will take each day and make it THE day, and live like you're gonna be here for another 50 years. You can (and will) worry, but you need to try to minimize it, in relation to the rest of your life. Be/stay active, exercise regularly, choose to do other things, remember the good things in your life, and let the worry go, as much as possible. In the meantime, hang here with us and we'll be glad to share with you... tongue
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


geon
Regular Member


Date Joined Oct 2007
Total Posts : 103
   Posted 1/27/2010 1:09 PM (GMT -6)   
ET..
Carpe Diem!
Cease the day and let God carry it the rest of the way.
What you heard is true and as best as they know it. Take the " all will be well" atitude and get out of the worry rut. It does not solve anything and it will not correct natures way. . Take the first step away from worry and don't look back. There were not greater worry warts then in my family including me. My wife trained me and I like the freedom and relief that I have received from worry. You will enjoy your sexual intimacy more deeply also wothout the worry. In with the new and out with the old.

Good luck and great news. All will be well.
Marc
66 years old 01252010; healthy; active,
married 43 years, good strong erections before surgery.
DaVinci Prostate Removal February 5, 2007
2/12 samples malignant.
Catheter removal 2/13.
Viagra 25mg every other day from 2/14 to 5/12. no help.
Incontinence almost gone after three months.
No pads, occasional  dribble.
Lavitra every other day 5/12 to 7/22. no help.
Muse 1000mcg - no help (50% at best). little help.
Cialis twice a week 7/25/07 to 11/6/08. no help.
Vacuum pump - Huge erections but not useable.
Trimix injections started.  0.09cc is great! 10/08/07.  Still good at 0.10CC and stimulation.
First drug induced erection 10/8/07....Wow!
Natural erections - 0 as of 2/5/07.
PSA's, many to date undetectable.  Thank God!
Total ED...Since 2/5/07  URO took me off oral drugs 11/2008.
Geon


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 1/27/2010 1:11 PM (GMT -6)   

English Teacher

Glad you found us!  This forum has a lot of members who will jump in and provide all sorts of information and advice.  Also you will find the support excellent.

Glad that you are over your surgery and that your PSA is undetectable.

Everyone has their own road to recovery.  From your posting, it sounds like you are on par for your recovery.  I was told it would take up to a year to feel completely like yourself again and after three months I can say that even though I found the surgery fine and had little pain, I am still not myself -- too tired too easily and still working through this disease in my mind.

Michael gives very good advice above.  I would be the kettle calling the pot black if I did not admit that I too should take his advice.

Keep us posted about your journey.

Skeener 

 

 

.

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.
RRP 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.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 07/10.      


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/27/2010 1:56 PM (GMT -6)   

I really enjoy this story Abe Lincoln told; perhaps you will, too:

"Many years ago, when I was a young lawyer, and Illinois was little settled, except on her southern border, I, with other lawyers, used to ride the circuit; journeying with the judge from county-seat to county-seat in quest of business.

Once, after a long spell of pouring rain, which had flooded the whole country, transforming small creeks into rivers, we were often stopped by these swollen streams, which we with difficulty crossed. Still ahead of us was Fox River, larger than all the rest; and we could not help saying to each other, 'If these streams give us so much trouble, how shall we get over Fox River?'

Darkness fell before we had reached that stream; and we all stopped at a log tavern, had our horses put out, and resolved to pass the night. Here we were right glad to fall in with the Methodist Presiding Elder of the circuit, who rode it in all weather, knew all its ways, and could tell us all about Fox River.

So we all gathered around him, and asked him if he knew about the crossing of Fox River. 'O yes,' he replied, 'I know all about Fox River. I have crossed it often, and understand it well; but I have one fixed rule with regard to Fox River: I never cross it til I reach it.'"

 

 

 


geon
Regular Member


Date Joined Oct 2007
Total Posts : 103
   Posted 1/27/2010 2:10 PM (GMT -6)   
English Teacher,
I neglected to add on the above reply, yes, BE CONCERNED, but do not worry and let it control your life. Abe Lincoln's story above relates to this as well. We don't make light of these things, but we do need to be realistic. Take courage and don't cross the bridge until you have to.
Marc
66 years old 01252010; healthy; active,
married 43 years, good strong erections before surgery.
DaVinci Prostate Removal February 5, 2007
2/12 samples malignant.
Catheter removal 2/13.
Viagra 25mg every other day from 2/14 to 5/12. no help.
Incontinence almost gone after three months.
No pads, occasional  dribble.
Lavitra every other day 5/12 to 7/22. no help.
Muse 1000mcg - no help (50% at best). little help.
Cialis twice a week 7/25/07 to 11/6/08. no help.
Vacuum pump - Huge erections but not useable.
Trimix injections started.  0.09cc is great! 10/08/07.  Still good at 0.10CC and stimulation.
First drug induced erection 10/8/07....Wow!
Natural erections - 0 as of 2/5/07.
PSA's, many to date undetectable.  Thank God!
Total ED...Since 2/5/07  URO took me off oral drugs 11/2008.
Geon


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/27/2010 3:14 PM (GMT -6)   
English Teacher,

I welcome you as well, to HW Prostate Cancer. You are at least already on the recovery side, sounds like things are coming around for you.
Wish you had found us sooner, but glad you did. Please stick around and post some more about your PC 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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/27/2010 3:19 PM (GMT -6)   
English Teacher,

I hope you Sieze the Day instead of ceasing it. The guys above are saying it like it is. We are dealt a card hand, we have to play it.

The first line treatment has the highest percentage chance of a cure. If you have salvage radiation next, you have about a 30 to 40 percent chance of cure. The HT is more of a prolonging treatment, but can be effective for nany years.

That being said, you will have to decide how yiu want to live the next 10 to 15 years. You can either Sieze the Day, enjoy life, and throw caution to the wind, or you can worry about things you can't change, be angry, miserable and depressed.

I have chosen to love my wife and family more, smell the roses a little more, take time for things I enjoy, and of course, keep my uro appointments, but without the worry.

Good luck. I think yiu will find this site therapeutic. You will find guys who have a much tougher row to hoe than we do, who have taken life as it comes, thankful for each day, and hoping for a good day tonmorrow.

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


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 1/27/2010 4:28 PM (GMT -6)   
Welcome
Nobody here is going to tell you that Gleason 8 is a good sign, but the rest of your pathology report does look good. I'm a numbers sprt pf guy sp I often recommend the Sloan-Kettering nomograms. You plug in your stats and it gives you the odds of 5 and 10 years with undetectable PC
www.mskcc.org/applications/nomograms/prostate/PostRadicalProstatectomy.aspx
I think you will find numbers that would put you in the hall of fame if you were a ball player.

The 3 month PSA is the pattern that most of us post-surgery guys live with. I just had my 9 month blood draw today. After diagnosis, I was very depressed, went to a therapist and am on antidepressants. It has been a great help.
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


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 1/27/2010 5:36 PM (GMT -6)   
ET

You have good advise here. Try not to worry too much in reality most of us have thought about and had some fear of PC biting us again. As time moves on we get a bit more confident. The truth be known if you look at post from the past almost all of us have had anxiety waiting for the results of our PSA.

Do keep us posted. We are a bunch of mis-fits and are here for each other in good times and in some not so good time.

Stay well

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)


Englishteacher
Regular Member


Date Joined Jan 2010
Total Posts : 28
   Posted 1/27/2010 6:39 PM (GMT -6)   
These thoughts, observations, statistics and anecdotes are most helpful and therapeutic in and of themselves. I'm one of those guys who loves hearing advice, experiences, philosophies and perspectives, not that I always heed it all, but it helps me along the way.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4226
   Posted 1/27/2010 7:19 PM (GMT -6)   
Et,
A good mantra is never worry about things you can't control. Your numbers look good and there are only two possible outcomes; you will be fine or you will have a reoccurrance sometime in the future. There is nothing you can do about it. You can only take action once a reoccurrance occurs and then there are many tools you can use.
"Don't worry. Be happy"
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


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 1/28/2010 12:40 AM (GMT -6)   
Hey ET,

The best advice I was given a long time ago is to glance at a lingering problem but don't stare. Ask yourself if you have done everything you can today then look away.

Please stay with us. We can all get well together.

Jim
Age 75. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06. Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + .05 cc Trimix = Excellent Results
PSAs from 1/3/07 - 7/17/09 zero.
Next PSA - July/2010
Lung cancer dxed on 5/16/08. Surgery on 6/25/08 T1N1M0 - Stage IIA Finished 4 cycles of chemo on 11/7/08.
CT scans on 12/2/08 - 12/22/09 - in remission!!!
Next scan in June 2010.
Biker90's Journey
http://www.caringbridge.org/visit/jimrobinson
"Patience is essential, attitude is everything."


Dragonslayer
New Member


Date Joined Jan 2010
Total Posts : 8
   Posted 1/28/2010 5:06 AM (GMT -6)   
Hello English Teacher, good to have you on board. I am a (newbie) too but just want to let you know that you will learn alot from all these guys. Many have been here long years with a lot of experiance of dealing with pc. I learn something new each day by just listening to the chats. It is a tough cookie for any man to swallow but each day I move forward and I don't look back. Each experiance in life teachs us somthing, mine was that what I thought was important is not quite as important as I thought.
I now see how important the little things are and cherish each day. Each day I read how each guy handles the problems of pc and moves on to a new day. Each day the sun comes up and we start the new day. Learn not to waste that day by worrying but learn how to handle the pc. These guys will help you though the day. I too have entered the great (watchful waiting game) we all play and if I get the psa climb I will start somthing different but I will know that we all together on this.
Welcome to the group
Dragonslayer
age 56
dx 9-09 biospy  psa 5.6
gs 3+3 =6
robotic surgery 11-09 pos margin 1 nerve left
cath out 5 days
incontinence 99% dry 1-9-10
ed levitra 10 mg 3 aweek/ pump
 
Life has many dragons, it is how we slay them is what makes us
 


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 1/28/2010 7:38 AM (GMT -6)   
English, there are many - including myself - who empathize with PSA syndrome. As others have said, while a Gleason 8 isn't the greatest news you could have received, all other info on your path report is good (negative margins, etc.). My husband is a T3a except that he's a Gleason 7 (3+4)...with the exception of a scare this summer (see my signature), he is doing great and closing in on 2 years since surgery.

Negative margins are a big deal but are never a guarantee (the converse is true as well). An undetectable PSA 3 months post op is also a big deal - there are many on this board who were not as fortunate so count this as a blessing.

As to statistics, remember that you are not a number but a living, breathing human being. I too made myself crazy with statistics when researching my husband's surgical path report and spent 18 months worrying about something that I had no control over. I kept hearing that a rising PSA after surgery was a sure sign of a recurrence, and we even had spoken with a radiation oncologist to get things started. But I think that God had different plans for us because the PSA test that would have clinched a recurrence came back at zero, as did the one two months later. While the information I found on the Internet told me otherwise, our urologist/surgeon said this is more common than we think. The morale of this story: try not to worry until you have to.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV 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. Thank you God!

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