Waiting out the scans ...

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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 2/5/2009 8:03 PM (GMT -6)   
I'm sure that the majority of you guys have been where I am now.
The dark and quiet waiting. Waiting for the results of my bone and abdominal scans. It's so hard to get past that shock of how your life can do a complete 180 in the course of a routine checkup.(found PSA 8)
Haven't seen my urologist since the biopsy. He called and told me that my cores(12) were all positive (gleason 7 ... 1 Gleason 8) and ordered the scans. My research thus far suggests that Gleason 8 status in any configuration does not present a promising prognosis.
I been scouring this forum and I get the message. Gather your information, get as many opinions as you can and don't rush your decision. Can't believe I'm here.  All cancers are horrific and criminal.
This one's a pickpocket.
 
Oncas

gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/5/2009 8:08 PM (GMT -6)   
Oncas, You post and muse as much as you need to. Your situation is serious but there is still good reason to hope that a local treatment will take care of it. Please continue to let us know how you are feeling about it.

Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/5/2009 8:13 PM (GMT -6)   
Oncas,

Yes, that's the very evil nature of cancer, unfortunately. Hopefully your scans will come back clean. As Scott suggested, despite the numbers so far, you still might be fine for a localized treatment method. The shock part is most normal, hits some worse then others, I feel for you on that part, but you are right, research, ask questions, ask again, think it through calmly, don't rush a decison or let anyone force you into one. We are with you brother.

david in sc
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/6/2009 7:39 AM (GMT -6)   
Oncas- sounds like you got a decent working concept on PCa and its complexities. Your scans could easily come back clear (mine did and I had worse numbers than you mentioned), but.... is that a guarantee of no PCa? ( PCa comes with no guarantees), good to see clear scans as non-clear are not what anyone wishes is their case.
Look into nomograms, Partin tables with all your data collected and see what the odds are pointing to, and this is only an averages gig, some patients could do better or worse and parameters, measuring/assessing PCa is all less than 100% for information etc. Perhaps see surgeons, radiation oncologist and PCa oncologist if you have that luxury, great to hear what they say on your case and compare such and analyze what that tell you, that alone could be the greatest PCa education in the 'real world' that you could ever get.

Good journey to you no matter which path, people herein can help you walk it and get through it.

Dx-2002  (total blockage urinary,  12/12 biop. all postive  (80-90%)and gleasons 7,8,9's equally on both sides, bpsa 46.6)=  7 yrs.  (current psa .36 now and been dropping on DES- 1mg)

 


 

Post Edited (zufus) : 2/6/2009 9:41:44 AM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 2/6/2009 8:13 PM (GMT -6)   
PCRI.org has a lot of information for the newly diagnosed. There are several papers on the information you must collect about your specific cancer to help you decide on which option has the best cure possibility for your circumstance. You can also download partin tables that give probable outcomes for each treatment option.
For the most sucessful outcome:
1. Understand the nature of your particular cancer, volume, gleason, % core ect
2 Match the treatment option to your particular cancer to optimize the best treatment.
3.Find the best doctor that gives the treatment you chose.

Good luck and remember that information is your best weapon in this fight.

JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 2/8/2009 1:02 PM (GMT -6)   
Meeting with my urologist for the first time since the biopsy and scans were performed to discuss the results. After the biopsy he alerted me on the phone that all 12 cores were positive and the Gleasons were all 7s and one 8. I fully intend to seek other opinions. I have an appointment with another urologist scheduled for the following week. He told me to bring all test results with me. Re my appt. tomorrow what specifics am I looking for from my biopsy and scans? What form will my results be in, paperwork? radiographs? that I will have access to and can hand carry to my next appt. Forgive my pc 101 questions but this is still incredibly new and my education is still trailing my situation. I will be closing that gap quickly.
Thanks for all your help.
Oncas

gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/8/2009 1:50 PM (GMT -6)   
Hi Oncas,

Keep thinking positive, it is clear you have a serious cancer but it is not clear that it has yet escaped the confines of the prostate. The reports shared with me at this meeting were the pathology with pictures and a description of each core. The PET scan was both a picture where you could clearly see the glowing in my arm where I had received the injection and also glowing in the center of my pelvis, there was also an interpretation indicating the scan was positive for PCa and negative for distant cancer. There was also just a report of the CT, no film indicating a mildly enlarged prostate.

Please let us know, good luck. Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/8/2009 3:19 PM (GMT -6)   
Oncas- get copies of your medical records from your first doc-by law in USA you are entitled to them, they can charge you for copying such and can even make that painful ($30+) if they wish. Get the copies of your tests like: psa's, ultrasound, biopsies=pathology report, blood tests if done, other tests if done and scans (report or film). This is what is important to bring to another doc for second opinions and you keep your copies, they can copy them of yours , don't give up your copies, you might want further opinions.
Take a tape recorder perhaps, and take your spouse or family member...better memory with two heads there.
Good hunting of course.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/8/2009 3:20 PM (GMT -6)   
Oncas,
Just remember, we are with you all the way.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/8/2009 9:06 PM (GMT -6)   
Oncas,
My biopsy showed 2 cores with Gleason 4+4 and 4+5 and my PSA was 3.5. My CT and bone scan were both negative but, as mentioned on this board already, that is not a sure thing. I'm having robotic surgery tomorrow and I and my doctor agreed on being aggressive in removing what needs to be removed. At this point it is all about getting rid of this beast. Keep you head up and be optimistic.
Age: 67
5ft 10 inches 182 lbs
Retired in 2001 and living in Austin TX.
Dx 12/30/08
Scheduled for Robotic surgery on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
12 sections tested 2 with cancer
Left Medial Apex 4.0 mm. Gleason score 9 (4+5)
Left Lateral Apex. 2.0 mm Gleason score 8 (4+4)
Negative CT scan and bone scan done on 1/16
PSA 3.5

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