Welcoming any advice

15 years 9 months ago #18281 by Melisa
Replied by Melisa on topic Welcoming any advice
Wendy..dad's surgery is early in the AM. He checks in at 6:10 the surgery is scheduled to begin at 8:10. I was told that the doctor said to notify him whether he wanted to have the procedure or not because he postpones other surgeries and appointments, blocks off his schedule and makes the patient recieving the RC the highest priority. (There is some relief in knowing that). I did read up on the hospital last night. They have a cancer center attached to the hospital (for outpatient services) so there is some relief there too and I found more information on the doctor. He primarily deals with prostate cancer however bladder cancer is second to that (although I stated before, he only does 4-5 RCs a year). He does use the daVinci robot with his prostate cancer patients - I am unsure if he will use it during dad's RC. I read up on the use of a daVinci and its relationship to length of stay, overall recovery, decreased pain postop,etc. - Thank you for your words of wisdom!

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15 years 9 months ago #18278 by wendy
Replied by wendy on topic Welcoming any advice

Hi Melisa,

Ok, so you can't change doctors now...but I really hope that your father is scheduled as an early surgery and not the last surgery of the day. That is why my aunt was left with a swollen node, the doctor was too tired and forgot to turn her over and operate there as well, it was his last surgery, late in the day on a Friday, he was on his feet since 6:00AM, very common. I would go so far as to say if your father is late on the schedule to demand a postponement. If the surgeon does relatively few cystectomies he can at least take his time and not be exhausted during the operation.

There has been a lot of discussion between experts about the wait between diagnosis and surgery; until recently the rule of thumb was no longer than 90 days. Recently I read that a ceiling of 45 days should be striven for.

Wishing you and your family all the best,
Wendy

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15 years 9 months ago #18250 by Gene Beane
Replied by Gene Beane on topic Welcoming any advice
Melisa,
Gene was diagnosed July 3rd here at our local hospital with a turb, then in August another turb at the Cleveland Clinic to verify the first, surgery Sept. 14th, 3 months is the suggested time after diagnoses, no longer , I was concerned by the wait but I put my faith in our surgeons hands and believed he must know what he is talking about. And he did.
I had a stepmother situation with my dad, she had all the power, my mouth got me in alot of trouble but I am not sorry now. Sometimes she was WRONG, and blood is thicker than water, and surprisingly my dad let her know it under certain circumstances. I flew from Cleveland to Tucson 4 times 2 weeks each time to be with him, my sister and I stayed at a Country Inn suites, my dads condo wasn't set up for visitors, and we weren;t asked anyway by stepmom.. So we didn't care we had more freedom that way anyway. It can be a precarious situation..Stick to your guns,
in a nice way of course.....Ginger

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15 years 9 months ago #18241 by Melisa
Replied by Melisa on topic Welcoming any advice
Wow, thank you all for the expedient responses and wealth of information!

Ginger and Gene, I will be sure to check out your post dated Sept 2007 for your post op experience/information. I appreciate you pointing me there. I agree with "4 eyes better than 2", etc. How is a patient supposed to be their own advocate when they are heavily sedated? - not possible. Having someone attend your appointments with you is a good idea too - it's easy to get overwhelmed.

Wendy - yes getting my father to change doctors or at least get a second opinion will be (has been) a challenge and with the surgery scheduled for this coming Wednesday it will probably be impossible. My stepmom did tell me last Thursday that my dad did not necessarily care for the surgeon scheduled to do the surgery (she liked him but he did not.) To me - it is more important that HE like the doctor. I will be bringing that up this evening.

Karen - yes, I am aware my stepmom probably has more pull than I do, not only because of her role in his life but because she has 30+ years experience as an RN and he relies on her knowledge. Of course this does not deter me from doing my own research and relaying what I find. I am not pushy (I hope) just informative.

I do have an additional question. How long was it for you all between the recommendation to have the RC and actually having the procedure?

Admiration and respect to all of you,
Melisa

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15 years 9 months ago #18222 by Gene Beane
Replied by Gene Beane on topic Welcoming any advice
Pat, Yes Gene ate french toast day 4, not 3, jello day 3,,so if jello is considered food he had it, all colors. The stoma nurse situation is sad, everyone should have the experience we did, I can't imagine after 5 days in the hospital being left to go home and try it yourself, these stoma nurses stay for 2 hours when they come, they take all your vitals, talk to you about how you are coming along. change your bag with you, and help pick one thats appropriate for your body style. You are released from them when you can do it yourself and they are happy with the progress.
This is true, they are in short supply, we need lots more of good stoma nurses.

Ginger Beane

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15 years 9 months ago #18216 by wendy
Replied by wendy on topic Welcoming any advice

Dear Melisa,
I also haven't heard of this. I wondered if the doctor meant treating the prostate? Sometimes radiation seeds are implanted, and perhaps this happens at surgery but I'm not sure. Prostate involvement is extremely common with bladder cancer.

Considering the progression from superficial to invasive, I understand you wanting your father to have the best experts on the case. I would feel the same way, but I have experienced myself that it can be impossible to get a person to switch drs if they are comfortable with them. My aunt paid the price of going to a regular hospital and having an inexperienced surgeon do a total colostomy but forgot to remove a swollen node. She'd had pre-op chemo and radiation, and much chemo post op as well but the protocols were bizarre- I tried to say it but nobody wanted me to. She paid a high price.

I agree with others who've said try to get your father to a cancer center with the state of the art diagnostics and treatment options...second opinions are also quite normal, routine even and the dr. shouldn't mind at all.

Your father is young, I know men much older with many other health issues get cystectomies and do fine after. His general health sounds ok, though a history of stroke is always a risk. However, cancer is also a health risk!

Your father is so lucky to have your love and understanding, I"m sure he appreciates it even if he's the silent type.

Take care,
wendy

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