Checking in and update

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Dec 2009
Total Posts : 97
   Posted 6/29/2010 7:50 AM (GMT -6)   
Hi guys and gals
I am so sorry I havent been out much but I will make a long story short.My psa after radiation was 0.2 which was a gigantic relief ,I am still having a lot of pain in my pubic and anal regions and cant get a straight answer from my dr. about what it may be.All he tells me is what ever cancer cells that got out of my prostate would go to my bones.So now I guess I will have to go elsewhere to get checked out to see what else Is gone awry.As soon as I find anything out I will let all of you know.Thanks so much to all my pca brothers for letting me share my problems with you and shedding a little bit of hope with your wisdom.Thank you so very much for your time and help.


Subject added for archiving and searching

Post Edited By Moderator (James C.) : 6/29/2010 7:40:43 AM (GMT-6)

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 6/29/2010 8:30 AM (GMT -6)   

my salvage radiation ended 7 months ago, and i still have daiy bouts of pubic, penile, scrotom, anal, and rectal pains that i never had before radiation. Some days its milder than others, but by the end of the day, there is a lot of serious pain going on. Most of it has been attributed to post radiation damage, and have gotten a range of answers on healing - from six months to a couple of years. Depends who I talk to.

If you find an answer, please post it here.

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

Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 6/29/2010 1:38 PM (GMT -6)   
Howdy Zach- find a decent onco-doc is where you need to focus in getting decent results and best care scenarios for you, maybe best if onco-doc is open minded in working with your wishes too and not the soup N_ZI type like on Seinfelds show. I just somehow don't like those types (lol), it seems the doc should be fighting the disease and not the patients best interests and wishes they might have or overlook them and talk down to you like your life isn't yours but belongs to them. Sometimes you might have to tell a doc, drop the agenda and let's try this drug or that...and that is exactly what some other friendlier docs do anyway (without all the agenda and drama). Some patients have been known to fire docs and find others. (gee only did that 3 times)

All kinds of specialized tests that a good onco-doc could do to determine your extent of disease levels and protocols to consider to fight such. In Dr. Strums book find such information to read about, might be a little beyond our normal comprehension atleast we can get the message if nothing else. Look at anything and everything is perhaps in your best interests. I bucked the normal processes to some degree and feel great and got 8+ yrs. thus far with a death sentence prognosis back in early 2002. Finding the right doc for you is worth your time. Good sailing to you.
Youth is wasted on the Young-(W.C. Fields)

English Alf
Veteran Member

Date Joined Oct 2009
Total Posts : 2217
   Posted 6/29/2010 2:20 PM (GMT -6)   
I've not had any major pain. (RT finished 2 weeks ago.) However I feel like I have not had a single day without some discomfort since about a week after RT started, sometimes buttocks, sometimes belly/navel, scars area on abdomen, prostate bed, testicles, penis, rectum, anus etc. It is so varied it sort of makes me feel like there is not actually any pain at the source, but that a whole bunch of nerves have been irritated by the RT and are sending false signals to my brain.

One or two paracetamol/tylenol a day from the end of the first week of RT up till the end of last week helped a bit, but I also tried to keep exercising, which some days was really difficult when I felt so tired, but as exercise made such a big difference after surgery I had an idea that it might do after RT too.
Sitting still in a chair with a book seemed like a good idea when I felt so tired, but going for a short walk even when it was a real slow one had the odd effect of making me feel less tired when I got home.

Only other new thing in my life is drinking green tea in the evening as my last drink about two hours before bed.

Just a few random thought really rather than a definite idea about what's going on, but to be honest I don't feel as bad as I thought I was going to when i was about half way through RT and was expecting a gradual downward trend for several weeks.

Hope that those with pains feel less of it as soon as possible.
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 6:00 PM (GMT -6)
There are a total of 3,004,432 posts in 329,145 threads.
View Active Threads

Who's Online
This forum has 161738 registered members. Please welcome our newest member, Rosheen.
205 Guest(s), 9 Registered Member(s) are currently online.  Details
OzLyme, JoHnGaMeR90, island time, Ss800, jberda1, John-Can, Relentlesswill, brucen36, Mamatomypeas