Talk With Doctor Tomorrow

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

SurfingSpouse
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 10/27/2008 12:10 PM (GMT -6)   
My husband has had the biopsy, bone scan and CT scan. Tomorrow we meet with the urologist to discuss the next steps.

I've got a list of questions to ask him. My question for this group: what questions should I make sure to ask? Keep in mind that some of my questions are being asked as a way to educate my husband (with the hope that he'll be listening when the doctor talks). I've done all of the homework. He has not wanted to sit down and fully discuss the cancer. So I end up giving him information when I see an opening to bring it up. But tomorrow is important (for both of us) and I want to make sure I hit all of the bases.

Any suggestions are welcome. Thanks!
Husband's biopsy: 10/3/08
Husband's diagnosis: 10/10/08
Husband's age at time of diagnosis: 54
PSA: 5.0
Gleason: 3+4
Clinical stage at time of diagnosis: T1c
DRE: No nodules

Post Edited (SurfingSpouse) : 10/27/2008 9:31:34 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 10/27/2008 12:24 PM (GMT -6)   

IMO, your husband must take an active role in his PC, denial will get him no where.  He should be very thankful that you have taken such an active role.  He needs to realize that ultimately it his body, his life, and his PC.  My wife of almost 35 years is a nurse, and has taken an active role and been very supportful of my fears and worries right from the first.

David in SC


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/27/2008 12:47 PM (GMT -6)   
Surfing....I gather the appointment tomorrow is to go over various treatment plans. Urologists are surgeons and will most likely discuss the benefits of his treatment methods. Besure to consult with an oncologist, prefered medical oncologist for other forms of treatment plans as well.

For qustions with the Urologist/Surgeon here is what I would ask:

1) How many surgeries he has performed...open or laproscopic including robotic assisted.
2) What is the planned number of days in the hospital following surgery.
3) What is his planned methods for ED treatment following surgery and when will treatment begin.

These questions were important to me and I will give you my reasons:

4) How many surgeries are performed by him on the day of surgery. I did not want an "assembly line" surgeon
5) Will he provide a list of prior patients that you can contact to discuss surgery and follow-up. I would be very wary if he didn't.
6) Will he actually perform the surgery or will an assistant be doing the actual surgery. Sometimes surgeons will be training others and he is only there to oversee the procedure while someone else less experienced is actually doing the job.

Others will provide more questions to ask,

Good Luck
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA Oct 08 <.05


hangin-in
Regular Member


Date Joined Sep 2008
Total Posts : 78
   Posted 10/27/2008 1:09 PM (GMT -6)   
To ease your husband's mind and hopefully get him more involved in the solution... What are the chances of a full recovery? Perhaps he might feel less fearful and take a more active role. T1c... it sounds like he is lucky to have caught this early.
Rising PSA 12/06=1.6 12/07=2.1 5/08=2.6
Biopsy 6/4/08 Positive
Diagnose @ Age 51 Gleason 3+3=6
Bone & Cat Scans Normal
Lapro Surgery 8/18/08 at Memorial Sloan Kettering
Pathology report stage T2c organ confined with positive apical margin Gleason = 6 1/2
Catheter removed 8/26 - reinserted 8/29 - removed 9/2
No continence or potency problems.
First post op PSA 10/2/08 < 0.05


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4080
   Posted 10/27/2008 5:55 PM (GMT -6)   

Dear Surfing:

Here is the list of questions my wife and I used with the urologist/surgeon:

1.      Do you recommend robotic for my situation?  How do you compare this for my situation vs. brachytherapy?

 

2.      How many of these procedures have you done?

 

3.      For my situation, do you recommend surgery alone or with any other treatment. e/g/ hormone therapy?

 

4.      I assume this is nerve sparing surgery?

 

5.      Explain the procedure and timeline…pre op, op and post op

 

6.      If I decided this week, when would we start?

 

7.      What are the side effects for your patients?  Do you have percentages?  How do your results compare with best in class?

 

8.      Re the urinary side effects, do you prescribe drugs to control them?  Same for sexual?

 

9.      Will this cure the cancer?

 

10.  Why would I choose to go with you rather than to go to a center like Johns Hopkins?

 

11.  What happens if the equipment fails during the procedure?

 

These are the questions we posed to the radiation oncologist:

 

1.      How many of these procedures have you done?

 

2.      Do you recommend this for my situation?  How do you compare this for my situation vs. surgery?

 

3.      For my situation, do you recommend brachytherapy alone or with other radiation treatment?

 

4.      Is there any need for hormone therapy?

 

5.      Explain the procedure…pre op, op and post op..

 

6.      The seeds:

a. Some of the literature suggests using MRI to insert the seeds.  Is that your technique and, if not, why not? 

b. How many seeds and what type? 

c. Have you had any issues with seed migration?

d. Could you give us a general idea of how the seeds are plotted?  How many in each section, etc?

e. What is the life of the seeds? 

f. Do the seeds affect other organs? 

 

7.      What is the timeline…pre op, op and post op?

 

8.      If I decided this week, when would we start?

 

9.      What are the side effects for your patients?  Do you have percentages?  How about side effects over time, i.e. quality of life 2-3+ years out?

 

10.  Re the urinary side effects, how effective are the drugs to control them?  Same for sexual?  Bowel?

 

11.  Will this cure the cancer?

 

12.  What do you see as the advantages of this vs. surgery? 

 

13.  If I have this process and the cancer returns what happens?  Is surgery still possible in the future?

 

 

Good luck!.

 

 

 


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
27cc
Brachytheraply volume study 11/14/09. brachytherapy to be scheduled in early December


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2285
   Posted 10/27/2008 6:05 PM (GMT -6)   
Bring a tape recorder so you can review the conversation with your doc.  Otherwise it's hard to remember everything that was said.

RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 10/27/2008 7:25 PM (GMT -6)   
Tudpock did a great job of listing questions.

I suspect the first things to consider are what type of treatment - explore them all. Next, who is going to do it? Explore that! You need to have peace in your mind that you are doing the best thing for your situation. For the most part your first shot at this thing is your best shot. Also, keep in mind - depending on your doctor, he may be a radiation guy or a surgery guy. Generally, doctors try to sell their method, and they all have good arguments, but it is your life and you need to make that decision.

I found the more I read the more questions I had, and I had to go back several times just to ask questions & receive answers. Every time you think of something write it down. There is so much information on the www - read, read, read! Also, this forum is great becaus all these guys on here have been down the same road. Ultimately, you will get through it fine - this too shall pass!

RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04

SurfingSpouse
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 10/27/2008 9:53 PM (GMT -6)   
Wow! See, there were some questions in there that I never would have thought of asking. Thank you, thank you, thank you!

My husband did sit down with me while I copied them. I read them out loud. He had no comment. I just heard him give a big sigh in the other room. He's overwhelmed. I get that. Whether he's able to engage in this discussion or not, I've got to forge ahead. Remember, we wives know you men well. I know what I'm dealing with. I'm not going to make any decisions for him. I have neither a prostate nor a penis. I also don't want to be blamed if things don't go the way he assumed they would. You know, I'm kind of walking a fine line here! If this detachment is the best he can muster, then that's what we'll work with.

The doctor already discussed some of the questions when we met with him a few weeks ago. He immediately had someone provide us a list of prior patients. And she, the woman who compiled the list, said she was picking a cross-section of patients so we could speak to men of different ages, ethnicities, etc. The doctor also made it clear that he attacks the ED issue right away, telling us that Viagra would come into play quickly and that I'd have to help.

I'll keep you updated.
Husband's biopsy: 10/3/08
Husband's diagnosis: 10/10/08
Husband's age at time of diagnosis: 54
PSA: 5.0
Gleason: 3+4
Clinical stage at time of diagnosis: T1c
DRE: No nodules


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 10/27/2008 11:05 PM (GMT -6)   

Take notes, lots of them. Preferably a tape recorder or digital recorder. Remember no question is "dumb". You have been given a lot of great advice in the postings above.

If it would do any good, I would be most happy to talk to your hubby. I totally understand as I wanted to go hide in a cave or something. In fact, I thought it would be better just to die than face this. Well, I was WRONG. I am on the other side of the bridge and it is quite wonderful over here.

After I found that it is such a relief that the cancer is gone, that the incontinence stopped soon, that the bad ED didn't happen to me, I began to find things that I couldn't image really had a bright side. I didn't think I could handle not be able to ejaculate. Well, now that I am in that spot, I find it has its bright side too..... no mess. Sure being 54 it was kind of strange to have things different but it is not bad at all really. turn

If I could help in anyway, just click on the letter symbol to the left of this post and I'll reply.

I just went back to work today so I can't watch email all day long now like I did!!!!! wink

Have a profitable meeting tomorrow. We'll pray for both of you.

Bill


Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01


SurfingSpouse
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 10/28/2008 12:28 AM (GMT -6)   
Thanks, Bill. But he's not talking. He's finally started telling other men that he has cancer and is advising male friends to be tested. However, that's as far as he's gone thus far. He, like most men, moves at his own speed. He's not interested in discussing the cold hard facts. He doesn't even want to hear much of them from me . . . and he trusts me! He will not discuss this with anyone else. I thank you nonetheless. Perhaps after tomorrow's talk with the doctor, he will snap to attention. We shall see.
Husband's biopsy: 10/3/08
Husband's diagnosis: 10/10/08
Husband's age at time of diagnosis: 54
PSA: 5.0
Gleason: 3+4
Clinical stage at time of diagnosis: T1c
DRE: No nodules


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/28/2008 7:53 AM (GMT -6)   
Surfing,

Maybe as he's left to think about things and make his own decision he will come around. My husband darned near cost his own life twice by ignoring his body and his communication skills. In fact, he's 52 in a week and ignoring his family history because he doesn't want to hear any potential bad news.
No problems, just a history dictates he should have a simple, baseline colonoscopy. Easier to ignore and fight for his life I guess...sheesh! Like talkin to a rock sometimes :>) His life, our problem I explained. He's better than he was. Not a fantastic communicator but, much better. Good Luck and hang in there. We can't change people. We can only change the way in which we react.

Swim
 


hangin-in
Regular Member


Date Joined Sep 2008
Total Posts : 78
   Posted 10/28/2008 8:50 AM (GMT -6)   

Surfing,

Just a quick note... I think your husband is very lucky to have such a caring and understanding wife. Keep your head up. Chances are he will come out of this ok.


Rising PSA 12/06=1.6 12/07=2.1 5/08=2.6
Biopsy 6/4/08 Positive
Diagnose @ Age 51 Gleason 3+3=6
Bone & Cat Scans Normal
Lapro Surgery 8/18/08 at Memorial Sloan Kettering
Pathology report stage T2c organ confined with positive apical margin Gleason = 6 1/2
Catheter removed 8/26 - reinserted 8/29 - removed 9/2
No continence or potency problems.
First post op PSA 10/2/08 < 0.05


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2285
   Posted 10/28/2008 9:43 AM (GMT -6)   
Speaking of communication, while I have never been the I-Don't-Want-To-Talk-about-It type of man, I have become a better communicator since my wife and I have traveled the prostate cancer journey together, hand-in-hand, heart-to-heart.
PSA quadrupled in 1 yr (0.6 to 2.5)  
DRE neg  1 of 12 biopsies pos (< 5%) 
Open surgery June 06 at age 57
Organ confined to one small area Gleason 5   
PSA's undetectable  < 0.1  

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, April 19, 2018 10:55 PM (GMT -6)
There are a total of 2,953,476 posts in 324,009 threads.
View Active Threads


Who's Online
This forum has 162077 registered members. Please welcome our newest member, John77A.
303 Guest(s), 6 Registered Member(s) are currently online.  Details
Chava22611, Scaredy Cat, Saipan Paradise, pmitra0123, Tim Tam, Tall Allen