Still freaking about Dad's pain

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LuvMyDAD
Regular Member


Date Joined Dec 2009
Total Posts : 316
   Posted 8/21/2010 1:09 AM (GMT -6)   
Sorry to bring this up again, especially when I started this topic on a new thread. But I am freaking out still. My dad is still in pain even on his vacation and I feel so bad for him.
Seriously now, can it be pain caused by mets when his psa is .1 (see below)??????? It can't be right? Has anyone experienced really bad lower back and hip pain after radiation?

To actually have visible bone mets on a scan i read your psa has to be at least a 10. Also doesnt your psa have to be at least 50 before you start experiencing pain from mets? I don't know!!! I just don't want to believe its anything serious...

Sorryto bother you guys with this again, just really really sad, my dad has not had a break. Its been hell since November.

Lynne

Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 8/21/2010 1:27 AM (GMT -6)   
Hi Lynne,  Sorry to hear dads still in pain, but I'm with you on this one, surely it must be something else than Mets, cus his numbers are very good.  The pain must be coming from some other cause I think.  I'm no doctor but thats my take on it.  Hopefully more experienced guys here will chime in shortly.  Best of Luck, you father is very lucky to have such a lovely and concerned daughter.   ...Rgds Kev
Age 52yrs
6 out of 8 cores positive 3 X 60% / 3 X 10%

PSA 4 Gleason Score 3+4=7 Stage T1c

Robotic Surgery 24/12/08

Upgrade Gleason Score 4+3=7 Gleason Differential 60%/40%

Stage T2c Three small foci total volume <10%

Neg Margins and Nodes

Nil - Extraprostatic Extentions

Dry less than 1 week. ED- okay with Meds.

PSA at 18mths no change remains 0.03

"Everyday in Everyway I get better"

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/21/2010 7:30 AM (GMT -6)   
You cannot rule out possible mets(I hope it is not so and it shouldn't be looking at those numbers), but you don't understand fully all the inconsistencies in PCa, basically no rules in stone, plenty of unknowns. You could have an unknown PCa variant (not easy for pathologist to know this stuff), you could have maybe an aggressive PCa, that is not giving off much psa value and in these patients could even have mets with psa of under 5.0 or such. There is no guaranteed psa level whereby you do not have mets, now likelyhood values are known and written about, call them generalities and lots of generalities are put forth in PCa, also exceptions, exclusions. Did you have all the marker tests Dr. Strum talks about in his book, that real good onco-docs would use to help define if this actually is bone issues or not? Maybe go get a second opinion or QCT scanning that Dr. Strum mentions as better for bone density testing.

I don't claim to know what is going on, but those signs are something you should investigate. Sure, could be something else and we hope so.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 8/21/2010 7:42 AM (GMT -6)   
Is there anyway this could be something totally unrelated to PCa - such as back problems, bulging discs etc? i've had two back surgeries and what you're describing sounds a lot like disc issues. it's easy to focus on one cause, when actually, he could have something else - brought on by stress, movement (lack of movement) strain, etc.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 8/21/2010 7:59 AM (GMT -6)   
My PSA has been undetectable for 5 years. I have mets all over both lungs and on my right pelvis. A new one on my right hip is causing horrible pain. I'm on oxycontin and oxycodone and am to start radiation to hip this week. (I'm still waiting for approval for Provenge.)

You guys who are convinced your troubles are over when you get an "undetectable" are, in some cases, deluding yourselves.

Post Edited (Gordy) : 8/21/2010 7:04:07 AM (GMT-6)


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3893
   Posted 8/21/2010 8:10 AM (GMT -6)   
I had a Sciatica attack 6 or 7 years ago, very similar symptoms. It started off as severe pain in my right hip joint, thought it was arthritis...Then numbness, in a spiral, down my right leg..

Look up "Sciatica" and see if that's what is going on with Dad...
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/21/2010 11:21 AM (GMT -6)   
Bro. Sonny has just recently been treated with radiation for a Met on the top of his leg, having a rising PSA after radiation that was done after surgery. I dont believe the has to be above PSA of 10 rule is written in stone. Its possible your dad is dealing with something PC related, or as others have posted, might be another cause. Good luck.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3997
   Posted 8/21/2010 12:13 PM (GMT -6)   
i've been on lupron for five months and it  does cause me joint pain, but it's not excruciating.  when it's at its worst i can't get comfortable anywhere except my bed, and a nap helps tremendously.  the stiffness and pain makes me grunt and groan like an old man cool .  i recently quit riding my bike because among other things my shoulders, neck and hands would ache but i'm now riding a recumbent bike in an air-conditioned gym which is much easier on me.
 
so far my treatment has included HT, BT and IMRT.  i think the lupron has been the toughest treatment and the double whammy i got especially from BT and HT was particularly rough for weeks.  i'm now getting the double whammy from HT and IMRT but thankfully my last shot of lupron is past its peak and the side effects from the IMRT are milder than those from the seeds.  unthankfully i have one more week of IMRT to go and  a week after that i will be getting another three-month shot of lupron (my last).  so im expecting a double or triple whammy soon tongue .
 
i have exercised regularly for years -- weights and bike -- and the doctors portray me as young and strong.  still the combination treatment has been tough and the side effects are constantly changing.   so when i read your posts i really don't expect the worst for your dad, and i certainly hope for the very best!
 
F8
age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IMRT

FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 8/21/2010 12:35 PM (GMT -6)   
two things:
"To actually have visible bone mets on a scan i read your psa has to be at least a 10."

Not sure where you read this but I not sure I've ever heard anything close to this? Every case is different,
that is the only thing the is consistent about this disease. The location of the tumor (met) is more likely
a cause of the pain, not the PSA level.


"Also doesn't your psa have to be at least 50 before you start experiencing pain from mets?"
Again, not the case at all, mine reached nearly 200 earlier this year and though I had extensive tumors, I had no pain.
Two months later the pain came in a bog way.

There are men with high PSA, and not pain and men with low PSA and extensive pain.

You might consider an MRI or CT scan of the area. For me, bone scans where no exact or detailed enough.
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
T3N2M1c
Lupron since beginning
Was on Casodex, then HDK, the Nilandron
Finished 12 rounds of Taxotere on January 26th
14 radiation treatments in June 2010 for leg/hip pain

Current (8-13-10)
PSA: 30.8
Treatment: Lupron, Zometa, DES+Cumadin
~~~~~~~~~~~~
Personal Blog:
prostatecancerat42.blogspot.com

Post Edited (FLHW(David E)) : 8/21/2010 12:42:11 PM (GMT-6)


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/21/2010 1:34 PM (GMT -6)   
Lynne, sorry I can't be any help to you on knowing what your dad is facing, but I did want to chime in and wish him all the best. I'll look forward to hearing how he's doing --- and good news!

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, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

T40
Regular Member


Date Joined Oct 2009
Total Posts : 103
   Posted 8/22/2010 12:29 PM (GMT -6)   
Is your dad taking Cialis? I'm 41 and Cialis kept me awake for 96 hours from the incredible back pain. It was similar and almost as bad as having a kidney stone. Once I realized it was the Cialis I stopped taking it and it still took about 2 days to subside.

T
Age 40
Pre-op PSA was 5.8 from wellness test on May 19, 09
Follow up test from uro was 4.6 with a 9.3% free psa
Gleason 3+3 in one core, 3+4 in second core of 12 samples taken
Surgery performed 9-19-09.
One side nerves spared. Nerve graft on other side.
Six weeks incontinence almost over. ED a work in progress but seeing some response.
4 months no longer using pads. ED using trimix with positive response.
Post op October 2nd, 2009 All margins were negative. Post op pathology 3+4 PT2A NOMO
6 wk PSA .004 3 month PSA .003 12-18-09 6 month PSA .003 3-17-10
9 month PSA .005 6-9-10 (They changed the protocol to .005 as lowest number) They told me this after I got the results...
At 11 month mark viagra works to about 90% with Trimix working just fine. PA tells me I'm months ahead of schedule on ED

wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 8/22/2010 12:50 PM (GMT -6)   
I know this sounds strange but kidney stones can cause low back pain with the pain radiating to the hip. I found myself pounding on my hip with my fist just to make it hurt in a different way. The pain can be below the waist and to the right or left of the spine by several inches. The pain can be intense.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3893
   Posted 8/22/2010 3:12 PM (GMT -6)   
That's the trouble with cancer...All your other ailments get blamed on the cancer and sometimes other more common reasons get overlooked...
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..
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