need backup plan-- Mayo?

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compiler
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Date Joined Nov 2009
Total Posts : 7205
   Posted 11/23/2009 12:55 PM (GMT -6)   
I am not yet a full-fledged member of this club, but unfortunately I appear to be heading there (details in my signature). It has been tough. Anyway, I'll finally get the biopsy out of the way on Monday the 30th. If the biopsy is negative, I'll have to see what the doctor recommends. I imagine it will be to wait and see what my PSA does in 3 months? If positive, then I will go the surgical route if appropriate. I'll also consider WW if the results are extremely good . But, suppose the biopsy results are really bad -- to the point where Dr. Menon feels surgery will not be helpful.
 
What are my choices then? I think I would want to consult a capable specialist, given the advanced nature of my cancer in such a situation. Would radiation treatment be appropriate in such a situation?
 
Has anyone gone to Mayo in Minn.? In particular, there is a Dr. Kwon who seems to have done some good work (see http://discoverysedge.mayo.edu:80/de09-2-kwonblute/ for an amazing result). But, of course, I would not want to suddenly go experimental without trying something else first, I would think. I emailed Dr. Kwon and he wrote back a very nice email indicating that he has a clinic there and he does regular treatments as well as the advanced experimental stuff). Any thoughts? Is anyone familiar with Mayo in Rochester and/or Dr. Kwon?
 
Incidentally, I know some of you might read this and think that I have gone off the deep end (mentioning such experimental stuff before any dx.). It's just that I know myself and if I got terrible biopsy news I might not be able to think rationally for awhile. I think it is rational to have a plan if surgery is not feasible. But I don't have a plan yet.
 
I know, the responses...TAKE A DEEP BREATH.
 
Mel
 
 
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future. Just in: BAD NEWS: PCA-3 = 75.9! Cut-off is 35. Biopsy scheduled for 11/30


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 11/23/2009 2:09 PM (GMT -6)   

Well, Mayo may be moot as I see my insurance doesn't cover it. I thought they did as they seem to cover Mayo Clinic Methodist Hospital. I'll have to check that out more carefully.

 

Mel


PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future. Just in: BAD NEWS: PCA-3 = 75.9! Cut-off is 35. Biopsy scheduled for 11/30


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 11/23/2009 2:53 PM (GMT -6)   
What are all the really bad things that might happen to you today? There are many. Do you plan for them? No -- apart from taking sensible avoidance procedures, like looking both ways before crossing the street.

There are many things your biopsy might show and only some of them really bad. Should you plan for them? No again. When you know your biopsy results, then is the time to start planning. We often fear the worst in cases such as this, but it seldom happens.

I guess this all is just another way of saying "take a deep breath" :-)
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/23/2009 3:15 PM (GMT -6)   
Mel, not sure I have ever seen anyone jumping so far ahead in their mind and emotions about PC without as much as a diagnosis. Sounds like you are flat worrying yourself to death.

At least wait for your biopsy, and for your sake, I hope the entire conversation of PC becomes a mute point to you. Sounds like you are "what iffing" yourself into an early grave.

If you ever get a real PC dx., you will still have plenty of time to sort out possible solutions, if any are needed. Just hate to see anyone so uptight about what has even happened yet.

Perhaps you would be best to put the whole subject of PC to bed until you get your biopsy done.

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
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 11/23/2009 3:20 PM (GMT -6)   

Yeah...you are all correct, of course.

 

Mel


PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future. Just in: BAD NEWS: PCA-3 = 75.9! Cut-off is 35. Biopsy scheduled for 11/30


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 11/23/2009 3:41 PM (GMT -6)   

Repost your questions if and when you ever reach that point.

 

Zen9


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 11/23/2009 4:21 PM (GMT -6)   
Strum says "Status before Strategy".
in order to have favorable results:
1. Know the biology of your cancer.
2. Choose the treatment option that best fits your PC's biology.
3. Choose the best artist in that treatment option.

You are wasting your time and effort before you know the status and the staging of your PC as ths will dictate what optons are best. You are putting the cart well before the horse.

JohnT

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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/23/2009 4:41 PM (GMT -6)   
Compiler- you are letting your imagination run rampant with worse case scenarios, chill a little  and later get to know the pathology with the actual copy in your hands. John T is showing the wisdom that comes from Dr. Strum, whom is a well schooled PCa oncologists and has seen it all in patient presentations and knows alot about patients options and methods to guide them to wiser decisions.
Know what you have first and comfirm anything with PCa, second opinions on pathology, psa or any tests, then look into strategies and your total options available.

Peace on Earth-Goodwill to All

Post Edited (zufus) : 11/23/2009 4:23:58 PM (GMT-7)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/23/2009 4:48 PM (GMT -6)   
When you get ready to talk to soneone, look up Dr. Maha Hussein, at University of Michigan Cancer center.

She is an oncologist with impeccabele credentials. If you google her, you will see what I mean.
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 injections


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 11/23/2009 4:53 PM (GMT -6)   
Go to the movies go out of town. Do whatever it takes you from stopping this panic and your imagination running amuk. My god man wait until your biopsy results to think about what you may or may not have to do. I've read this for a few days thinking you would calm down but you're getting yourself wound up more and more.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
April 2009 12 of 12 Negative biopsy
10/12/09 - Psa .30
 
 
 


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 11/23/2009 4:57 PM (GMT -6)   
How old are you? Not sure if you ever stated your age. I understand wanting to know everything, even before it may happen, but there is plenty of time. Like you said, take a breath. When I went to the doctor after I was diagnosed, I went in with written questions. I wish I had carried a tape recorder.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


OKboy
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 11/23/2009 6:39 PM (GMT -6)   
Mel: I understand the tendency to put the cart before the horse. As you can see in my signature, we're kind of in the same boat. My PSA has risen pretty sharply in the last year (1.93 to current 3.7). In the week before my biopsy last June, I would have bet the house that the biopsy report would be positive. But . . . 12 cores - all benign - with 3 cores positive for chronic prostatitis and inflammation. Like you, antibiotic treatment didn't lower the PSA, in fact it was higher in the test following the antibiotic regimen. Since that time (August), the urologist said let's wait until December and see what the PSA and DRE do - and we'll go from there. I won't say that I haven't still had some anxiety over the matter, but this time has been valuable to educate myself a little more - and to come to the realization that if the doc delivers those dreaded words . . . I'll be ready to fight. However, the more I've read, the more I've come to understand that prostatitis is difficult to understand and to treat. My prostatitis symptoms (burning, groin pain, decreased urinary stream) continue - so I feel there is just as good a chance that that is my condition as the other. On another topic, I dreaded the biopsy much more than was necessary. I took a low mg valium and a Lortab an hour before the procedure, the doc used the lidocaine injection, and I can honestly say that neither the lidocaine injection nor the core injections were painful. I walked out of the room 10 minutes after I entered and went to a fairly lengthy social event the same evening. Best of luck to you - know it's difficult to relax about all of this, but try to enjoy the holday.
DOB=March 1959
PSAs (*s done @ uro's lab; others @ family doc): 10/05=1.2; *10/06=1.22; *12/07=1.68; 08/08=1.5; *12/08=1.93; 04/09=2.9; 04/09retest=3.4; %fPSA=15%; *05/13=3.17; *08/09=3.45; 10/09=3.7; DRES=neg.;
06/09 Biopsy=12 benign cores, 3 cores show prostatitis.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 11/23/2009 7:58 PM (GMT -6)   

folks-- as I said, you are certainly correct. It just took me awhile to calm down. Rants are over and I am ready to get on with it.

 

Mel


PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future. Just in: BAD NEWS: PCA-3 = 75.9! Cut-off is 35. Biopsy scheduled for 11/30


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/23/2009 8:58 PM (GMT -6)   
We are all here for you, Mel. Trust me on that point. If you have ultimately the unfortunate reason to be a full fledge member here, you will be among the best, and you will be one of us, another brother of the PC.

BTW, you have good questions, but all in good time. Right now, you officially don't have PC, and perhaps don't period. So enjoy every moment that you don't have it, because if you do, and once you do if you get dx, everything will change.

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
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 11/23/2009 10:28 PM (GMT -6)   
Mel, Sounds like you just neede that release of fear. We have all had those thoughts. Those of us that have done the dance know that you just take a deep breath get results then we start thinking and visiting Drs that are approprate. You will be fine. Have a great Thanksgiving and be thankful for everything that you have now. Take a nive little trip and get you mind off of your test.

We will be here to walk with you throught the process.

Jeff T
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.


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/24/2009 7:36 AM (GMT -6)   
Mel, there is little I can say that will calm your fears. But, remember that everyone on this board has been where you are or is in the same place. I was not worried about my husband's biopsy - he had one before - never thought it would come back positive. I walked into the house after work one night and my husband was on the phone with his urologist - he looked at me and said "it's cancer." I literally felt the floor beneath my feet give way. But, you are not there yet. Take it from one who knows (I too am a "control freak"), worrying about something that may or may not happen serves no purpose. If the news is bad, you will still have to deal with the emotional impact. If the news is good, you will have caused yourself grief for nothing.

Keep us posted, please - we all care about you.
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 SA. PSA: 0.0 til July 2009. August 2009 PSA was 0.1, in September it was 0.3 Met with radiation oncologist, CT scan and bone scan clean. Third PSA on October 16 - PSA BACK TO UNDETECTABLE! Next PSA scheduled for early December. No radiation treatment at this time!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 11/24/2009 7:40 AM (GMT -6)   
Mel,

Your profile says that you are a College Mathematics Professor. I would like to appeal to the professor in you.

Mathematics is a progression of logical steps and analysis, is it not. Do you teach your students that they can arrive at the correct answers to problems if there are blanks left in the steps of progression? If you let them fill in their own blanks there will be too many variables in arriving at the ultimate and CORRECT answer.

In another life did you aspire to be a race car driver? You need to look down at the gauges. You are redlining the tach in your race to stay a step ahead. You are going to blow a gasket soon. You are at this point so far ahead of the other drivers that you need to back off the gas and save the engine for the next 490 laps of a 500 lap race. Yep, in the grand scheme of things, you have only completed 10 laps. Get the picture.

So let the blanks be filled in first in the equation. Back of the throttle and coast for a while, knowing that you are saving fuel and the engine, should you need them if the races tightens.

Have a great holiday with your family. Back away from the keyboard for a few days.

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)

Post Edited (Sonny3) : 11/24/2009 6:45:54 AM (GMT-7)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/24/2009 5:02 PM (GMT -6)   
Sonny,

I feel like I'm in the car !

Think I'll just park this thing.

Great post for a lot of us !
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 injections

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