Got my appointments/plans in place--questions to ask?

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 12/8/2009 10:58 PM (GMT -6)   
Well, my appointments are all set.
 
On Monday, I go to Umich and will see:
Dr. David Woods, a surgeon and then Dr. Hamstra, a radiation doctor, and finally Dr. Hassain, a urological oncologist.
 
(I may have the spelling wrong on the last two names above -- I'm too lazy/tired to dig through a growing mound of papers now to find it)
 
On Wednesday, I will be seeing Dr. Menon, a surgeon at Ford Hospital, and his team.
 
I have already requested that my slides be sent to Ford Hospital for a second reading. If they concur with the results I have, I will probably not seek a 3rd reading from an expert; if there is a difference (especially if it is worse), I might send the slides elsewhere if I feel it will make a difference in treatment. It also might be that Ford will send the slides out for a third opinion.
 
Ok my friends. I really seek advice on what to ask. I am going to ask each expert what his expertise can offer me (ie: radiation/surgery). Also, I want each doctor to look at the biopsy report and tell me what they think I should do. I guess that's obvious. Also, I had an umbilical hernia repair at birth and an inguinal hernia repair in 1988, so the obvious question for the surgeon: does that impact the surgery.
 
Meanwhile, I've done tons of reading/research but I also feel a bit burned out. It seems early on I had a ton of questions but now I don't. I will ask if I have aggressive cancer, but I know it is impossible to answer that at this time. (It's silly, but I'll ask). I realize it is difficult to prognosticate without the final pathology after a surgery. I can run the Partin Tables and Han table. I have and that's probably my best estimate at this point.
 
I will ask the surgeons about recovery times and their experiences with after-effects (incontinenece and ED). I will also want assurances that THE surgeon I'm talking to will be the one to do the actual surgery.
 
Although I am clearly leaning towards surgery, I will have an open mind about other modalities.
 
SO, I KNOW there are probably another 20 questions I should be asking. I would welcome suggestions!
 
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.


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 12/9/2009 6:20 AM (GMT -6)   
Mel, I'll let others guide you as to questions but I wanted to compliment you on your tenacity and hard work. Seems like you've got your ducks in a row, and are plowing ahead. Good luck with your consultations.
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!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/9/2009 6:48 AM (GMT -6)   
Mel- you have done a terrific job in looking at this with books, questions, analyzing things. This forum gave you alot of feedback from a multitude of perspectives and travelers on the PCa highway. I would say you could review the questions list that is used herein and posted at www.yananow.net or consider some of those and would say you probably already analyzed those?

My passing thought is add this: seek higher guidiance cannot hurt you, in making your final decision and secondly put on your game face and use your intellect or like street smarts....know when you hear b.s. and analyze the source for your own comparison and contrast. There is b.s. out there...you could ask them a loaded question to see how they answer it...that could be a clue. (bottom of Page 13 in green ink of Dr. Strums book kind of sums that up in alot of different words)

Post Edited (zufus) : 12/9/2009 5:52:37 AM (GMT-7)


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 659
   Posted 12/9/2009 7:08 AM (GMT -6)   

Hernia could be a problem for robotic surgery, did you have surgical mesh placed during the surgery? If you are unsure you should obtain a copy of that report for the surgical team that is going to be doing the evaluation. Also I find it very interesting to read each consult report that is sent back to your primary physician. It can be very telling as to the content of the report and what actually took place. One of my evaluations stated that additional physical exam was deferred at the request of the patient…not true, so I didn’t go back to that physician.

Jack

 


Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. 75% of one core.
da Vinci at Wash U, Barnes on 11/02/09
Pathology Changed Gleason to 4 + 3 = 7. Gleason 7 present in all 4 quadrants
All(4)periprostatic Lymph Nodes Negative, All(10)pelvic Lymph Nodes negative
Seminal Vesicles tumor free. No prostate extension


Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 12/9/2009 7:09 AM (GMT -6)   
Hi Mel,

My advice is to listen carefully to each of these professionals and take notes or use a small hand held recorder to record the comments as after a few meetings, you will not remember it all and may even mix things up. Take someone with you if you can as they can help in remembering what was said. It can be confusing especially as you are stressed to begin with and the medical jargon they use can be a chalenge to understand. Then review all the advice in a comfortable time period, in your space, and make a decision that is right for you.

Hope that helps,

Regards,
Bill

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 12/9/2009 7:59 AM (GMT -6)   
Mel, I know others will offer suggestions of what questions to ask better than me. But you mentioned surgery as your leading choice at this point, so I would ask your surgeon how many surgeries does he perform a day. Reasoning is that if he does three a day, are you the first or last. Complication set in during surgery that are unavoidable and you want your surgeon to remain focused on your surgery and not be thinking ahead to the next patient. My surgeon only does one on the day of surgery and it was one of my criterias. Next question would be...is he the one that will actually perform the surgery or will he oversee an associate that is learning the ropes so to speak.

Get your list of questions prepared ahead of time, and even after that you will walk away still thinking of more questions you didn't think of at the time. Always remember...one answered question will only raise two more questions behind it. Just part of the process.

Good luck and if I read right....the prior hernia operations will complicate things...so be sure to bring that up.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08
                 12 month Oct 2009 .09 


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 12/9/2009 10:34 AM (GMT -6)   
Be careful how you ask the "are you the doctor who does the surgery" question. Asked that way, the question will (nearly) always be answered in the affirmative. I would also ask (getting at the same question) "what role if any do residents or fellows (or anyone else) play in the surgery". I would ask Dr. Hassain not only whether she recommends surgery or radiation, but also how she would go about making the decision (advantages and disadvantages of each). She is likely to be the most "neutral" of the three concerning the choice of treatment modalities. I would ask the radiation oncologist (and Dr. Hassain) whether, if you did radiation, they would recommend only IMRT, only seeds, or a combination, and why? (And if combination, in what order -- an issue about which there is difference of opinion in the radiation oncology field). Ask whether studies show increased "cure" rate with both seeds and IMRT, compared to one or the other, and whether increased side effects. Ask all the docs about the advantages or disadvantages of adjuvant hormone treatment, before/during/after treatment, and if so what is the appropriate legnth of adjuvant treatment. (I would ask more than "do you recommend this" -- you seem like a careful guy and I am not sure you will be satisfied with a yes or no answer -- so ask WHY they do or do not recommend and what the medical evidence is to support or not, etc. -- of course you do not need to understand the reasoning and the medical evidence, but it might make you feel more comfortable -- and anyway you want a doc who is willing to answer your questions and provide reasoning). I would ask all whether they see value in going to the Netherlands for a combidex scan, to evaluate lymph node involvement (if you have the inclination/resources to do that if it were recommended). I would ask someone (maybe not the doctor) whether your insurance is covered for the contemplated treatments. I would ask the radiation doc what is the ideal dosage of radiation, and over what period of time. I would also ask the radiation doctor whether he thinks the ASTRO definition of biochemical failure is the right measure to use, if you were to go with radiation, and if not, then what would be his measurement for biochemical failure and what would be recommend as the next step after that. I would ask the radiation doc and also Dr..Hassain about the advantages and disadvantages of proton beam radiation as an alternative to IMRT. Ask all the docs whether they have any diet/nutrition advice, and what it is. If you have not had a vitamin D level test, I suggest you do so and depending on your 25(OH)D level you should ask about vitamin D3 supplementation. I hope some of this is helpful. I do not have prostate cancer, so there are many here who are MUCH more knowledgeable than I am. But I went through all this with my dad in some detail, and learned some things in the process. As someone else here said, I admire your tenacity in learning and seeking out expertise. I suspect that tenacity may help save your life. Just make sure that, in between all this prostate cancer stuff, you have a few good dinners, see a movie, etc. Best wishes,
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/9/2009 12:16 PM (GMT -6)   
Here's a couple links to previous threads dealing with this info.

www.healingwell.com/community/default.aspx?f=35&m=1278296

www.healingwell.com/community/default.aspx?f=35&m=1300628

www.yananow.net/questions.htm
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/9/2009 1:19 PM (GMT -6)   
If you can bring another person with you, sometimes the info you receive can be confusing later

If you are having Robotic, its ok to ask your Dr, who is operating the Console and who is opening and closing. Its also ok to ask your Dr how many time he operated the console. They may lump in all surgeries, you want to know exactly how many time he operated the controls

Ask each what is the Doomsday scenario, if I choose radiation what options do I have next. If I chose surgery 1st , what options do I have if it comes back

Start your ED recovery today, the more you use it before surgery the faster your recovery will be after

I always asked each Dr one final question. "If you were in my shoes what would you do and why"
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/9/2009 1:56 PM (GMT -6)   
I always asked each Dr one final question. "If you were in my shoes what would you do and why"

Mr. Gimpy, that is an excellent question, a perfect one to end a consultation with. I have used it before in my PC journey. When my GP passed me off to the urology, I asked him that, and he said with my numbers: definitely surgery, but he would go robotic, because as a dr with a busy practice, he couldn't afford the down time with an open surgery. When I settled a plan with my uro/surgeon, his answer was similar, he would have surgery with my stats, and also want robotics for the shorter healing (even though he only does open). Both of them said they would have had it done in either Atlanta or Charlotte, only because at that time, robotic prostate surgery was very new to my area, and they too wanted a more experienced surgeon for themselves.

When I asked my radiation oncologist (and she's a woman) what would she had done with my stats originally. She said, if she were a man with my numbers, she would have had open surgery, locally. And save radiation in case the surgery failed.

So I think its a great question to remember to ask.

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


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 12/9/2009 4:49 PM (GMT -6)   

THANK YOU   THANK YOU   THANK YOU.

This was one of the most informative threads. I have added greatly to my list of questions/concerns. Now to organize them. ALSO the links specified were very helpful.

 

Incidentally, one question I had that I did not see anywhere else:

Can I email you with questions?

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.


zachattack
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 12/11/2009 3:36 PM (GMT -6)   
Mel,The best comment I seen is to pay attention,thats something I did'nt do till just recently.I've known my surgeon for twenty plus years and trust him completely.You will be the one that makes the final decision!and I know deep down you will make the right one.Heck as much as you have studied in to this I can think of no one better prepared for this Journey.I wish you all the best.

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

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