Update on my consultations/Questions-what do you think?

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compiler
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Date Joined Nov 2009
Total Posts : 7269
   Posted 12/12/2009 3:01 PM (GMT -6)   
Howdy:


We leave tomorrow for Ann Arbor, a 2-hour drive. We have consultations scheduled on Monday (surgeon, radiologist, urological oncologist). We plan to drive back Monday. I will teach on Tuesday and then drive back to Detroit (about 2.5 hours) that night for my meetings with Dr. Menon and his team (a PA, a nurse, a diet expert, etc.) on Wednesday. Depending on weather and if Umich decides I need more tests (scans?) that I can do on Tuesday, we may just stay there and skip that extra round trip.



Anyway, I thank all of you for indulging me here. Hopefully, I've contributed and raised good questions. I've also tried to be honest about the emotional aspects of all this. It has been a horrible, emotional nightmare. Interestingly enough, work has been great. I actually barely think about problems at work. That has simply gone great. Nobody at work has a clue (other than the few who had to know such as HR and the Dean, since we are looking at some lengthy absences, starting with these darn consultations). Now, I hope you all will indulge me further. In fact, maybe the following will be useful to others.



After my reading, thinking, forum activity, I have finally come up with questions to ask on Monday and Wednesday. I still have to fine tune them and organize them a bit better.



Additionally, I know some of the questions cannot be answered with any degree of certitude (eg: how aggressive is my cancer) but I hope to get more insight via the question answers.





I WOULD GREATLY APPRECIATE IT IF YOU COULD LOOK THROUGH THESE AND MAKE FINAL SUGGESTIONS. Questions follow and again I thank you for all your help, suggestions, and support as I continue this sucky journey!




1) Color Doppler with Fred Lee in Rochester Hills?

2) Send slides to other good labs like Bostwyck?

3) Backup Plan – what if surgery (radiation) fails?

4) If you were in my shoes, what would you do and why?

5) Would you be the one actually DOING the surgery?

6) How many surgeries have you done?

7) What are the advantages/disadvantages of radiation/surgery? Side effects and percentages?

8) For radiation, what kinds are there and what kinds do you recommend? Combination? Advantages and disadvantages? How much radiation over what time interval? Proton Beam vs. IMRT vs. Brachytherapy. Long term/short term effects.

9) Adjuvent therapies?

10) Adjuvant hormone therapy?

11) Nutrition advice?

12) What is the status and severity of my case? Is my cancer aggressive?

13) What is the probability of a cure? What treatment affords the best chance of a cure?

14) Will the surgery be nerve sparing? On both sides? Will this help the continence issue?

15) What is the probability that this is organ-confined? Prostate-area confined?

16) What are the chances of a full recovery?

17) Gleason 4 + 3 is bad, but isn’t the 5% number good?

18) How do you compare radiation vs. surgery for my situation?

19) Can I send you a question via email?

20) What are the chances of recurrence? Metasteses?

18) How soon can we do the surgery? General time-line from start to release?




Edited to remove extra markers that was causing long blank spaces, James C.

Post Edited By Moderator (James C.) : 12/12/2009 2:55:58 PM (GMT-7)


60Michael
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Date Joined Jan 2009
Total Posts : 2243
   Posted 12/12/2009 3:22 PM (GMT -6)   
Wes that is a great list and hopefully he or she will be able to answer most of those for you. Someone on the forum recommends a tape recorder but it is good to have a second set of ears working with you. Good luck and keep us posted.
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
Consulting with Primary Urologist for further tx.
Great family and friends
Michael


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/12/2009 4:01 PM (GMT -6)   
I am guessing but they will say Dr. Fred ???whom.....probably not worth your time???
Probably also say why send it to Bostwick?, we have experts right here that even better.
Sometimes what is not said, says alot too.

You can inform me next week on this, good luck in this thing. I think you will find Menon is an interesting person and will likely meet his assistant(s) in this too. Be ready for further explorations called DRE's, oooohps probably should not have mentioned that. (HA) It is what it is.

Post Edited (zufus) : 12/12/2009 7:49:02 PM (GMT-7)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 12/12/2009 4:14 PM (GMT -6)   

Zufus:

 

Really? DREs? I thought I was done with them for awhile.

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/12/2009 4:20 PM (GMT -6)   
Seems like a good list -- the answers will probably overlap several questions, so as others have said recording or good note taking is important. I presume that the "we" is you and your wife, a good move, many of us have benefited from a second question asker.

Of course, you still won't know what to do. Supposedly, Sigmund Freud said that when you were faced with a difficult life decision you should flip a coin. BUT don't do what the coin says -- ask your self "how do I FEEL about this outcome?"
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


zachattack
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 12/12/2009 6:03 PM (GMT -6)   
Mel,No opinion just best wishes,GOOD LUCK BROTHER.

Zach
age 55dx 12-2008,psa at biopsy 8.6
biopsy 12/12 gleason 3+4=7
da vinci surgery 6-09 by DR. John W. Scott (my hero)
Hospital 3 days cath 7days still leaking from cough(bad lungs)
still have ed may be the hormones.
9-09 psa 2.2 hormone inj
10-09 nuclear bone scan no results yet I will have gold markers placed 12-29-09
start rad 1-10-09
organ confined
extracapsular seminal vesicle involvement
lymph node involvement


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/12/2009 7:33 PM (GMT -6)   
Mel,
Just be aware that a urological oncologist is not a medical oncologist, but most likely a surgeon that specializes in operating on cancers of the urinary track, bladder, pc, ect. He will have s surgeon's point of view and not a medical oncologists point of view,
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


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/12/2009 7:35 PM (GMT -6)   
Mel,
Add PAP test and a DNA plodigy to your list.
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/12/2009 8:55 PM (GMT -6)   
Many urologic surgeons are also medical oncologists. Don't be deceived by any other suggestions. Dr. Menon is a member of the American Society of Clinical Oncology.

Tony
Prostate Cancer Forum Co-Moderator


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 12/12/2009 9:07 PM (GMT -6)   

The urological oncologist at Umich that I'll be seeing is Maha Hadi Hussain.

 

I don't think she is a surgeon

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/12/2009 9:44 PM (GMT -6)   
She is a Hemotologist an an oncologist and not a surgeon. Both of my urological oncologists were surgeons.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/12/2009 9:54 PM (GMT -6)   
Great list of questions, hope you get a chance not only to ask them all, but to get full and detailed answers to them. Some of them can't be answered ahead of treatment, or after other testing, or after a full pathological exam of your prostate if you choose to have it removed.

DRE? Done with them? he he he. I thought that too. I have had at least 4-5 since my open surgery, both by my uro and my radiation oncologist, and I don't think for a moment I am through with them yet.

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, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/12/2009 9:56 PM (GMT -6)   
Mel, Maha Hussain might even want to try her hand at the DRE, any doc that examines you for an opinion is interested in knowing if it is palpable. I got many opinions and felt violated (LOL)- especially funny when female oncodoc did DRE and had to tell my wife to leave the room....talk about a weird scenario? Whom would have been embarr-assed more...me, the onco or my wife????(lol)

Good luck I would say you are one the better prepared guys, I wish I knew back then what you know now. The information on PCa has gotten dramatically better compared to 2002 era. You have that as a plus in your column.

Post Edited (zufus) : 12/13/2009 5:11:27 AM (GMT-7)


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 12/12/2009 10:48 PM (GMT -6)   
Mel-Dr. Menon didn't do a DRE when I met with him prior to surgery.  I asked him why not and he said he does it immediately prior to surgery, after I'm knocked out.  He said he can feel it better that way because the patient is not tense and he'll remember what he felt.
 
It made sense to me.  I'll be interested to know if he still has the same policy.
 
Dave
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/13/2009 6:54 AM (GMT -6)   
Mel- Dr. Menon did do a DRE on me, maybe because stats were so ominous he wanted to have that skill verified more, who knows. So one finger does not fit all (LOL). Maybe the situation makes a difference.
 
Mel-
This to shall pass.  Might as well think of this process as trip to Disney World, yeah its different than everyday living and you will later reflect on the journey and even laugh about some of the experiences (hopefully).  Right now is the hardest part, of this process. The story does contain some of the good-bad-ugly...hey alot like real life, but you can conquer atleast in dealing with it all. Best to you.
 

Post Edited (zufus) : 12/13/2009 5:09:55 AM (GMT-7)


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 12/13/2009 8:45 AM (GMT -6)   

I don’t know what hobbies you have and under the circumstances I’m sure you’d elect to pass on this prostate cancer journey and take time to enjoy one of your hobbies next week. However I’m very sure that your going to actually be engaged and find next week very interesting almost exciting. Good Luck Brother Mel.

Hero

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