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Father About to Undergo Radical Surgery

13 years 4 months ago #4398 by Rosemary
Harley,

I had another thought.  Here is the Home page for the MD ANDERSON web site Urology Clinic. ( I'm assuming because you mentioned it, that this major clinic is close to you in proximity... )

 http://www.mdanderson.org/departments/urology/

There is a 1-800 number at the bottom of the page.  I hope I am not being overly helpful here, but I will tell you what I would do if I were in your situation because I am big on networking when I need help.  I would call that 1-800 number and see if there is a surgical nurse or liason in the Urology Dept who could talk to you about your time-limit concerns for a consult at their clinic and ask what they recommend.  They may not recommend anything but they should at least give you some idea what is in there power to do for you.  Let them know that you are seeking the best care for your father in a crititcal situation.   But then,  they should know that.  I've heard a lot of good things about MD Anderson.

At least, it might help you feel that you have done all you can do in a bad situation.

Warmest regards,
Rosemary



Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 4 months ago #4397 by Rosemary
Harley,

Here is a free Doctor rating site.  I could not find either of my Urologists there, but there were lots of listings for my state.  I hope you get a hit.

http://www.ratemds.com/index.jsp

You might look up your Urology Clinic to see if your Doctor has a resume posted there.  If he has a good resume, it might make you feel a little better about what you are having to put up with.  I wish you had more options.

It could be that your Doctor and his clinic are just very overworked.  I find a strategy that is helpful in getting a doctor's ear is to be the first to be empathetic.  But pick your moments. If you are kept waiting in the exam room, you might say, "You seem to be really busy with a lot of patients."  This opens the door for you to find out where he is coming from.  I find that this usually gains the respect of my doctors and that they are more amenable when I really need some assistance.  Doctors are human, too.  Still, I wish you had other options.  It sounds like you are having problems getting your Doctor's ear at all or getting any moment at all.

This all sounds like trite advice under the circumstances.  Normally, I would tell you to look for other options but I can tell from your original post that you feel to be under a time constraint, and since the ball is already rolling....  Let's hope that your Doctor is at least a good and qualified surgeon.  

I'm really sorry that on top of dealing with cancer issues, that you are having to be upset by the ill treatment of the medical team.

I wish you all the best.  I wish you had more time.

Sincerely,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 4 months ago #4394 by harleygirl
Wendy,

Thanks for the quick reply. Your comment about "there's a lot to prepare for" is what worries me. My Dad's urologist isn't the most communicative, nor are the people who work in his office. I know that the women who work in his office must be constantly bombarded by people with "needs", but do they have to be so rude and seemingly uncaring? And why does it take so dang long to get the answer to a question or the results of a test?? We are willing to put up with poor bedside manner if the surgical skills are there, but we aren't even sure about that. We know he has done at least one surgery of this magnitude because we know the man who had the successful procedure. He recommended this urologist.

Seems to me there HAS to be a meeting in the urologist's office between my Dad and the urologist before surgery to talk about what is involved in the procedure, the recovery time, what he can expect, etc. Also, shouldn't he meet with a stoma expert pre-op to discuss that whole aspect of the aftermath? I think my Dad is thinking the next time he will see the urologist is in the operating room! I hope and pray that this is NOT the case. In one rare phone call, the urologist told my Dad that he (the urologist) would have to "shut down his office one day and do this surgery". Nice.

What does need to be done to prepare for this huge operation? Also, is there any way to check out just how good a doctor is? The urologist already thinks I ask too many questions, so I don't dare ask him how many of these operations he's done and what his success rate is even though I think it is extremely important to know. My Mom asked the first urologist if he had done a certain procedure before and his reply was "no, but I have a book and can read up on it this weekend." Wise guy.

I don't like this feeling of helplessness.

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13 years 4 months ago #4389 by wendy
Hi,

I can't argue with your father's decision, he's got the all-clear from the cardiologist for surgery-he must be in good shape, as you say. He wouldn't be the first 80 year old to get a urostomy. It's a difficult recovery but the relief of having the cancer removed makes up for that, to be sure. I would be anxious to get on with things and hesitant to start over with a new doctor and hospital at this point in the game too. I just wish the uro could spare more time, and not be so busy. There's a lot to prepare for.

I hope all goes well, keep us posted.
Wendy

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13 years 4 months ago #4387 by harleygirl
In late January of this year, my 80-year-old father was diagnosed with bladder cancer that has spread to his prostate. He has had two TURB procedures with the second one done as a second opinion. The first urologist said that he absolutely needed to have the bladder and prostate removed, even though it is not for certain that the cancer has invaded the bladder wall or muscle. The second urologist had 4 pathologists read the sample from the second scraping of the bladder wall, and still the findings for muscle invasion are "INCONCLUSIVE". They seem sure that the muscle of the prostate has been invaded, but can't say for sure about the bladder. However, all seem to say that it is an aggressive form of cancer which spreads quickly. I guess it is the word INCONCLUSIVE that bothers me.

During the second TURB, the urologist removed a lot of the exterior cancer of the prostate and some fairly sizeable masses that had caused urination blockage and a couple of trips to the ER. Dad is feeling so much better with just that small amount done. However, he is just waiting for it to block up again, even though we don't know that it will. It's like waiting for that "other shoe to fall." CAT scans, both with and without contrast, show no further spread of the cancer.

My dad went to the cardiologist yesterday and was given the "go ahead" for surgery. He is definitely a "young" and otherwise healthy 80-year-old man. He seems to feel that surgery is his only alternative. The urologist performing the surgery is going to do the illeal conduit with stoma bag as he did not feel Dad was a good candidate for other containment systems.

I must admit, he seems to be handling all this a whole lot better than I am! He is ready to get this awful thing out of his body and get on with life. I want him to go to MD Anderson in Houston and see what they have to offer, but we are not sure how much time we have to search for answers. We also have had trouble getting doctors to return calls, even when it was THEIR idea to call us! I fear even if we could get into MD Anderson, we would have to start again from square one. I don't think he would go for another bladder scraping! As it is, we still have to wait for the urologist to find time for us in his busy schedule.

I haven't seen many postings on anyone my Dad's age who has fought this battle. My Mom and my brother and I respect his decsion about how he wants to proceed. I'm scared and I think he probably is, too, but he would never admit it out loud. I think it must be something ingrained in men from his generation.

Thanks for letting me write all this down.

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