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Father About to Undergo Radical Surgery

13 years 7 months ago #4415 by Patricia
Harley....i had my first TUR done in Sept(2002) by a local uro......brain cells kicked in and i traveled all the way to NYC to Memorial Sloan to one of the best surgeons in the world...i made my own phone call...no referrals...and got in within 5 days. He scheduled me for a second TUR in the next week. He found that the first uro did not get the margins and i'm quite sure i would not be here today if not for him. He got all the margins even tho it was muscle invasive. I figured it was my life and whereever i had to go for the best treatment that was what i was going to do. I had time to do research on the different systems to see what i thought would work best for me and i traveled all over the place to see the top docs even Mass Gen where they do bladder sparing chemo and radiation but that is only for stage 2. I did not have my cystectomy until the following January...so 4 months had gone by. There was no spread and my nodes were clean. In order to get follow up care in my home town i called the few stoma nurses at the hospitals and got a recommendation from them for follow up care. But i still send a cd of my follow up CT scans to my original surgeon for him to check. I will tell you that MD Anderson was the ONLY major cancer center who did not return my calls.....within 3 weeks i traveled to USC/NOrris to see Dr. Stein....Dr. Schoenberg of Johns Hopkins talked to me by phone...Mass General...Indiana University Med Center and the Cleveland Clinic.
The fact that your uro says he will close his practice for a day to do your fathers surgery tells me that he does not do this surgery on a regular basis. The heck with hurting his feelings. Get that second opinion from MD Anderson. Go to their web site and call the appointment number and see if you can convince them of the urgency of being seen.
When i was in NYC and Cleveland I don't believe i saw anyone that was local...everyone traveled for the best care. In my case instead of a re-hab center i just spent an extra week at the hotel and a nurse came everyday just to make sure i was doing ok with my new apparatus and all the tubes still sticking out of me.
Don't be pressured by this doctor. I just don't understand the path reports....its pretty visible if its invaded the muscle. Pat

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13 years 7 months ago #4414 by Jmema
Rosemary,
Dr. Gott of Lakeville, Connecticut was our primary care physician for 40 years. He retired due to poor health July 1. I had my first symptoms on June 22. Needless to say it was a great disappointment but a younger Dr. in his practice took over most of his patients and he still writes his column. He told all of his old patients in a letter that we could call him any time we feel we need his advise and we do. He is an amazing general practioner and is always spot on with his diagnosis.
Blessings...Jean

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13 years 7 months ago #4413 by Rosemary
Yesterday, I read a quote from Dr. Gott's book in answer to a cancer patient who wasn't happy with his level of care.  Dr. Gott's reply was ,"SCREAM BLOODY MURDER"  This is coming from a doctor.  I thought of your dad when I read this.

I'm thinking, Harley, that maybe your father needs a second opinion before going forward.  

That's just my own very humble opinion.

Your friend,
Rosemary

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

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13 years 7 months ago #4412 by harleygirl
I would welcome the chance to ask the urologist about his track record if only I could ever get in touch with him! We are in Dallas, Texas and originally had decided to go to MD Anderson when we thought the urologist felt my Dad was too old for him to perform the surgery. We saw an oncologist here who started the ball rolling to be seen at MD Anderson but after more than a week, we still had not heard from MDA either. I sometimes think the waiting is the worst part.

Evidently the urologist found out that the oncologist had recommended MDA because, lo and behold, the urologist actually PHONED my Dad late one Friday evening to ask why Dad had decided to go to MDA. When my Dad told the urologist that he felt he had no other option since the urologist didn't seem to want to operate on him. the urologist's comment was "well, I will close my office for a day to do your surgery" or something to that effect. In my opinion, my Dad felt pressured to let this guy do the operation simply because the urologist put him on the spot by surprising us with a phone call. And the fact that we had not heard from MDA yet didn't help the situation.

As for stage, I'm sure it has been staged, but I'm not sure what it is. I only know that it has spread to the prostate and all doctors seem to believe it is an aggressive form of the disease that seems to be confined to the urinary tract tissue (lower part of the bladder and the prostate.) The thing that bothers me most is that the pathology reports keep coming back as INCONCLUSIVE as to whether the cancer has invaded the muscle or bladder wall. He has had several CT scans that have shown no other spread of the disease. I'm not sure why the urologist doesn't want to do bladder sparing procedures first and treat the prostate with chemo or radiation. In my opinion, the uro believes it is only a matter of time before the cancer invades the bladder muscle/wall and removing it is the prudent thing to do.

We have a physician friend who expressed his concerns about MDA to my Dad such as having to travel to Houston for followups when you don't feel very well and what do you do if an emergency happens at home and your doctor is at MDA? My thought is that people from all over the world go to MDA so they probably are used to dealing with these types of concerns. Although I know it is probably not possible, I wish some doctor could tell us how much time we have before the radical cystectomy has to be done. I read somewhere that 12 weeks from diagnosis to operation is the maximum time for successful outcome. He has had two TURB procedures. Doesn't that count as having done something?

I'm scared about the magnitude of this operation and what the recovery is going to be like for my father. My Mom is a young, active 77-year-old but Dad has already expressed concern over her having to bear the brunt of his aftercare. Reading the posts on this forum are helpful, but I must admit, do little to alleviate my fears. It is nice to know that others have made it through, but there don't seem to be any posts from folks anywhere near my father's age.

Thanks for the advice about picking up your own test results. Dad had a CT scan with and without contrast done last Friday as he had been coughing for over a month now. I will suggest that we go get the results ourselves. Since this cancer diagnosis, his every little ache and pain and cough and sneeze scares me to death as my imagination runs wild with possible causes. Has the cancer spread to the lungs causing the cough? Has it spread to the brain causing the double vision? Of course, I keep all this to myself and pray that my Dad doesn't think that way. After all, all the scans have been clear.

We are still waiting to hear from the urologist about a surgery date. And the waiting continues.....

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13 years 7 months ago #4411 by Jmema
Harley,
Read Pat's message again because she is soooooo right about RUN. Your Dad needs a good surgeon who does a lot of these operations and is empathetic with a good and caring staff.
I had my radical cystectomy with ieleal conduit on Oct. and I was 72. Being female I had a lot more done to me than they do to the men so if your father is fit and active I think he should be fine. Some people are "old" at 65 so I really don't think age has as much to do with it as fitness and attitude. The surgery is no picnic and the first few weeks are hard. If you read my thread you will see I went to a local rehab center for a week after I got out of the hospital (medicare pays for 120 days if your Dr. recommends it) and that was very helpful in my recovery.
I wish your Dad and your family all the best.
Blessings.....Jean

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13 years 7 months ago #4402 by Patricia
Harley..if a doctor does not want to answer the question how many of these surgeries have you done and what is your success rate.....my advise ... is RUN...don't walk...to the nearest major cancer center where they do these routinely. What part of the country are you in?
Urologists make their monies with all those prostrate patients.....ever notice the waiting rooms?....my uro never gets me in remotely close to my appt. time. I make a point of leaving after one hour. When i have my CT scans done i go pick up the results because if i had to depend on him calling them in to me i'd wait a month.
Has the tumor been staged?....what info have you gotten?
This is not an easy surgery on the patient..... Pat

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