Surgery pushed back again ... Need advice?

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Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/9/2007 4:32 PM (GMT -7)   
I am wondering how other people views on this situation and whether anyone else has experienced this, and if frustration/questioning is justified or if we are overeacting.  Our surgery which was "expected" around last week of February, was pushed back to April 3, and then unexpectedly pushed back to April 17 today (and then from some strong words from Ken, he was called back with the "good news" they can get it in the 10th).  But he is questioning now whether to go through.
 
Here is the history.  Trying to not make it too long.
 
We had our first consult with surgeon on Tuesday, Jan. 16.  When we asked how far scheduling was, he said last week of February would be when we could get in.   When we went out we talked to the receptionist and he said "try to schedule for last week of February."  He told us his surgical scheduler would call in next couple days with appointment dates (different than the receptionist).
 
Well, didn't hear from her at the end of that week so Monday came around and we called.  We probably got transferred four times.  Second person said we were on schedule for pre-surgery consult on February 16, so surgery "looked" like it should be last week in February, but wasn't on her calendar.  Transferred to nurse.  Nurse didn't know why they transferred us to her, transferred back.  Transferred to surgery schedule person, who put us on hold for about 15 minutes. 
 
Finally she said we weren't on the surgery schedule.  Earliest could get in was April 3rd.  We were kinda annoyed, and felt that we had fallen between the cracks (they have just moved into a brand new center and I had noticed it looked like a lot of new people were being trained on computers, procedures etc. when we were at appointments, so attributed it to that).  So she rescheduled our pre-surgery consult, a blood thing at the hospital, and said she would be sending out a packet in the next week with all our information.  That was on Monday, Jan 22.   
 
Well, we hadn't gotten the packet yet, I had a bad feeling and reminded Ken how they screwed the last thing up, so called today.  She looked us up and said, "ok, well I have you scheduled for April 17th.  I try to send them out about two months before surgery."  We said no, it is the 3rd.  She basically said "oh, I had to reschedule that due to the schedule, we aren't doing surgery the week of the 3rd." 
 
What's worse is who was going to tell us this??? If we hadn't called today WHEN would we have found this out??  Ken flipped a lid a bit.   She did call back and say that she found an opening on the 10th, which is only one week later.
 
But still the lack of communication from his scheduling/support staff is starting to freak us out.  Everything we have ever found out is from our calling them.  There is no communication flowing out to us.  It is just starting to disturb us greatly, and even though he is supposed to be the best around here, the incompetence of his staff doesn't reflect very well on having great confidence in the surgeon.
 
I know I am venting big time. But what do you think?  We are kinda between a rock and a hard place now, because switching surgeons at this point is probably gonna push us out farther.  Ken has asked for Dr. Ruyle to call him directly (and thankfully this won't be until Monday, cause I think Ken needs sometime to cool).  Realistically, it is only one week difference, so keeping that perspective in mind.
 
Anyway, thanks for listening.
 
 
 
 
 
 
 
 
 
 
Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment: DaVinci.  Sheduled April 3, 2007


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 2/9/2007 4:52 PM (GMT -7)   

 

You have a perfect right to be upset with the way your physician runs his practice.  I had some of these problems to a lesser degree and have heard some horror stories from others regarding scheduling. A doctor is only as good as his office and staff.  Unfortunatly patients are often seen as a source of income rather than a sick person who needs help.

Make sure you have a physician who is accessible.  Otherwise The only time you might see him is under the haze of anesthesia.

The office staff and surgery schedulers are often young women who have no connection to you and your problems. You need to get past them.  Take charge of your treatment.  Do not expect that the medical bureaucracy will treat you like any more than a number.  Once you are past that you can find some very good doctors doing their job

Sometimes you need to forcefully make your point and get your doctor to return your call so he knows what is really happening in his office.


 
Da Vinci surgery 1/16/07
 
History
11/05 psa 2.9
6/06   psa 5.8
7/06   psa 6.7
 
biopsy 10/16/06
gleason 4+4=8
grade T2A
 
scans and post op confirm biopsy results
 
scans and post op pathology show clear for spread
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 2/9/2007 5:02 PM (GMT -7)   

Izzy:

I think you have a right to be upset and I would certainly be concerned with the accessibility to this doctor AFTER the surgery if you should have questions or concerns.

The doctor should be made aware of the problems with his office staff.

Dutch

 

 


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 2/9/2007 5:17 PM (GMT -7)   
It is important to be completely confident and comfortable with your doctor AND his staff AND their competence. Waiting from January until April isn't that bad in itself; it's the treatment from the very beginning, regarding scheduling, that would have me talking directly to the doctor. If, after that, you are feeling uneasy with HIM in anyway, I'd be looking elsewhere.

We had to wait from end of May (dx) to end of September for surgery, but that is the norm here in Alberta. We were however, totally confident in our surgeon AND his staff from day 1. In fact we've commented numerous times that it's his assistant that really seems to run the show and he just has to show up for appts and surgeries. :)

Good luck to you both!
;o) Linda & Bob


Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more agressive, previously undetected cancer)      PSA UNDETECTABLE.   Next PSA check Feb 27, 2007.
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.

Post Edited (lawink) : 2/9/2007 6:25:50 PM (GMT-7)


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/9/2007 5:28 PM (GMT -7)   
Thanks,

Yes, Ken has asked to talk to the doctor directly. I think it is more a function of this brand new urology center.

I think whereas before they all had their own small private practices and have all joined together that communication isn't as easy as it was. The first time we were at the new center was a meeting with the radiology guy and he didn't even have a receptionist (it had just opened up). He walked through looked at the desk and realized no one was there, and said are you my next appointment? and then went behind the desk and got the papers and a clipboard. and mused about not having a receptionist. On other visits it seems like they are kinda unorganized, training people, etc.

But from the perspective of a patient it is kinda frustrating. Our appointment with our surgeon in person was positive, although there was someone at reception with someone over her shoulder trying to tell her how to pull up the medical info.
Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment: DaVinci.  Sheduled April 3, 2007


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/9/2007 5:50 PM (GMT -7)   
lawink,

right, I agree. It isn't necessarily the length of time. I was braced for perhaps a three-month wait and was elated that it was only going to be six weeks. But to be told that and then get it pushed out twice just plays a mental toll on one.

I would rather have been told May and then told April, rather than being told late February and then April and then later in April. Better to be told the worse and then get an earlier date.

That, and that we don't seem to be told about these changes until we call in.

We are going to talk to doctor on Monday. I think Ken put it very strongly that he wants to talk to the doctor. Of course if he doesn't call either, then a problem.
Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment: DaVinci.  Sheduled April 3, 2007


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 2/9/2007 6:30 PM (GMT -7)   
Boy you are right about how things take their toll on us emotionally. We didn't find this forum until about 3 weeks post surgery and emotions were pretty high here (mine particularly - wife). I had no where to sound off or even ask questions. Once I was able to read, share and post here things calmed down amazingly . . along with the fact, of course, that the surgery was also behind us.

We will be pulling for you guys! Please let us know what develops once the doctor talks with you.

;o) Linda
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more agressive, previously undetected cancer)      PSA UNDETECTABLE.   Next PSA check Feb 27, 2007.
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 2/9/2007 8:51 PM (GMT -7)   
dear izzy

your frustration over the extremely poor administration of the doctor's office and surgery scheduling are well warranted. you definitely need to have a discussion with the doctor to hear his views on the situation and have him tell you what corrective action he will take to remedy the situation. the key question, however, is whether or not you have confidence in the doctor. did you do adequate due dilligence when selecting him to perform the surgery? what is his reputation, how many operations has he performed, did you talk with any of his patients, what were the results, etc? the key with prostate cancer, as with many other serious medical conditions, is to seek the best qualified doctors who have a top notch track record. based on the statistics you submitted, your husband appears to be at a lower risk stage of cancer now. therefore, you have time on your side to seek out the best doctor for his treatment if you have not already done so. good luck!

dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in one area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/07.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/9/2007 9:01 PM (GMT -7)   

Hi ~ Tanya & Ken,

 

Our hearts go out to you at this time.  STOP ~ take a deep breath… and move forward… in a positive manner. 

 

The following is our opinion and we know there will be others who will have their own opinions.  That’s what we are here for….  This will help you and will help to calm you.

 

Remember…

YOU “Still” MAKE THE DECISIONS… YOU “Still” HAVE OPTIONS…

 

Phone call ~ No!!! 

Emergency…Personal Consultation …. (You, Ken, & Doctor) ~ Yes!!

 

You chose him for a reason and that reason may still be there.

Looking into his eyes and seeing his body language after you go over exactly what’s taken place with his staff.  You will know if you’ve lost confidence and respect for your surgeon and will be willing to move forward in the search for a new urologist.  You have to be mentally strong going into this as well as physically.  And you have to have solid trust!

 

I’m not sure the office “help” would concern me as much as my gut feelings for my doctor and the manner in which he comes across when told how you’ve been treated by his staff.  I would hope he would tell you point blank … this is unacceptable behavior from my staff and not try to make excuses…  but deal with it after you leave with a “new” updated schedule for surgery!!!  Again ~ trust, confidence, and respect….  Are they still there???

 

It is so important that Ken is 100% sure because you don’t want any doubts because it will show up in your recover/healing process.

 

Have your thoughts written down… have exactly what’s transpired written down so you can touch base on each point.  When you leave his office ….. you will know!!!!

 

Our thoughts and prayers are surrounding you with love and understanding. 

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

June 29th ~ PSA Less than 0.1 Non-detectable


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 2/9/2007 9:31 PM (GMT -7)   
Tanya,

What a shame. Please call and demand to speak to the surgeon personally. Apparently the man is not aware his patient has cancer and his office is causing poor Ken'e anxiety level to elevate to the point of not trustining his ability as a Physician! May-be, the Doc doesn't mind having his professional reputation affected by a lousey staff but I'll bet he does. Mistakes, unavoidable changes are one thing but these people are just incomps.
You pay the bill, remember that. Hope it all works out quickly.

Swim

jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 2/10/2007 6:54 AM (GMT -7)   
I sure hope the situation gets resolved. Don't forget that you are the customer.

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 2/10/2007 7:42 AM (GMT -7)   
This is more than about who pays the bills and being a customer. This is cancer and all the emotions tied to it. Your medical team - right down to the receptionist - should be there to waylay your fears, not increase them. They are there to make this trip easier on you and not cause any extra problems. Absolutely visit with the doc. Put each incident in writing and give it to him when you go. If he won't see you, write it all out and mail it.

I know it's difficult to switch doctors mid-stream, but perhaps there are other highly qualified robot docs in the area? Plus, you two really don't know how this cancer is acting inside, anyway. Now that your decision is made, it's time to move on with it - and everyone should be falling all over themselves to see that it gets done.

We had one glitch for X-rays right before the catheter came out. On the hospital's end. Our doc'scheduler was all over them (nicely) and in constant communication with us in the two hours it took to get us registered and in the system. Then, the doc immediately moved his X-ray business elsewhere because of it. All we had to do was sit back and let it happen.

OK, that's my opinion.
Husband age 65
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now
 


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/10/2007 1:22 PM (GMT -7)   
Thanks everyone for your thoughts and encouragement Planning on talking to surgeon on Monday and will go from there. Will let you know.
Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment: DaVinci.  Sheduled April 3, 2007


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/10/2007 1:30 PM (GMT -7)   

J  Hugs!!!! Comin’ atchu…


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

June 29th ~ PSA Less than 0.1 Non-detectable


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/15/2007 1:54 PM (GMT -7)   
update,

well, since Ken threw his hissy fit, it seems like they are on top of everything.

Still scheduled for the 10th of April. But early monday morning got several calls from there. Did a conference call from both original urologist and robotic surgeon.

Also got calls confirming pre-surgery stuff and health insurance. They seem on top of things now.

I still wish we were in earlier, but decided to take off for Mexico for a while in March while waiting, figure we can do some diving and sex and romance and all that before surgery.
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/15/2007 2:16 PM (GMT -7)   

J  Yes!!!! Great News….  Take the trip and enjoy each and every moment…  Thank you for the update… You’ve been on our mind all week!!!

 

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 2/15/2007 3:38 PM (GMT -7)   
dear izzy

all is well that ends well!!!!! i was delighted that you brought the doctor's office down to their knees. have a great fling in mexico before the surgery. what a great way to have some rest and relaxation before the big day ahead. i was wondering if your mention of the s-x word, might be considered x-rated on this message board!!!!! i love people with a great sense of humor and when one has PC, humor is the best medicine around. send us postcards from mexico every day. all the best.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 2/15/2007 5:10 PM (GMT -7)   
Tanya and Ken, I'm glad that things are better with the doctor's office. wow - Mexico in March! what part are you going to? the time will fly and soon you'll be done with surgery. have lots of sex! kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/15/2007 10:24 PM (GMT -7)   
Thanks everyone,
 
Kat - We are going to Cozumel.  Can't wait!!  Soooo sick of the snow (and the wind right now is blowing at 70 mph and cold)! We haven't been there before only been on the pacific side (Puerto vallarta).  If anyone has been to Cozumel, would welcome any tips/suggestions!
 
Although Ken is certified in diving, I am not, so going to do a dive resort course and then we can join up together for an easy shallow dive.  He is probably going to do a couple other deep dives while i go to the spa or whatnot.
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/15/2007 10:28 PM (GMT -7)   
I am not familiar with Puerto Vallarta, only to say this. LOL, we are at an Embassy Suites by the City of Hope tonite and the room that we had dinner at was called the Puerto Vallarta room. No Kidding. I recommend the Creme Brulee. mmmmmmmmmm. Have a great time down there....God Bless. (enjoy the spa, I hate the deep end of the pool)

Tony & Ruth

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 2/15/2007 10:33 PM (GMT -7)   
Ken and Tanya,

Have a great time playing in the sea and sun. My kids go to Cozumel but they don't talk about it much. (What happens in Mexico stays in Mexico) You need a nice break after all your frustration....

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Patience is a virtue - especially when dealing with the effects of PCa."


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 2/16/2007 6:31 AM (GMT -7)   
Great news, Iz. Now that's the way it should be! Now, you can have a few weeks of kicking back and maybe "forgetting" reality for awhile. That's always fun! And so is Mexico. (Not to mention the things to do there!)
Husband age 65
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now
 

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