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My Dad is having a radical cystectomy

13 years 6 months ago #374 by KarenE
Hi Wendy!
Thank you for writing back to me. Yesterday was an up and down and then up day. :)
At the end of the day my Dad's Oncolgist called him to talk to him about chemo before and after surgery. The Oncolgist had given my Dad information on studies done showing this to be more effective in the treatment process. My Dad was so happy to have the doctor actually call him. The Oncolgist had also spoken with the surgeon and they are both on the same page. My Dad has an appointment tomorrow morning to get the results of his Cat Scan. So my Dad finally has a "Plan". He actually slept better for once in a great while.
I will let my parents know about your response and I will look that article up.
Thanks for everything. I'm sure I will have more questions and more to report.
Karen

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13 years 6 months ago #373 by wendy
Hi Karen,

There have been a couple of studies published that have re-inforced the basic guidelines that say the maxium time to safely wait between the diagnosis of invasive bladder cancer and definitive treatment is 3 months. One was quite recent (Jan.''06, J.or Urology, A. Aprikian if you want to track the article).

April 20th for the first consult with a surgeon is cutting it close, if you time this from February 12. Given that he was diagnosed 3 months before with non-invasive cancer may or may not complicate that timing, I can't say. But it's certainly worth pushing with the doctors involved, I imagine they'd have hearts of stone if they couldn't understand the stress of waiting til April or longer. Since the guidelines do state at this time not to wait more than 3 months, hopefully they will speed things up if they know you're aware of that recommendation.

Cancer takes many years to become big enough to see. That said, is there a possibility of getting into another cancer center, sooner? There are many good places in southern California; USC/Norris cancer center has a great team for uro-oncology. http://www.usc.edu/schools/medicine/departments/urology/index.html Also UCLA stands out in my mind...but there are plenty of places, I know it's often all about insurance in the US...so I hope that there is some flexibility in that department.

Good luck with everything,
Wendy

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13 years 6 months ago #370 by KarenE
Hi everyone,
I am new to this forum and really appreciate it being here and helping out!
My Dad is in the middle of doctor appointments before being scheduled to have his bladder removed. He would like to have the Indiana Pouch. The waiting is killing him. He had some areas of cancer removed from his bladder (told they were not invasive) and after three months was rechecked and they found the area did not heal as they would like and he needed his prostate reduced. After this next procedure (2-14) they found another small area of cancer and removed that. He had a CAT Scan and was scheduled for appointments for Radiation and Chemo. He has sone a lot of research and talked to a doctor and decided he would rather have his bladder taken out. When he met with the Oncologist he told my Dad that the only option is to have the bladder removed. My Dad is ready NOW! Except.... the waiting for the CAT Scan - done last Friday. The follow up appt is for next week. The Bone scan was scheduled for next week, but the machine is broken and he has to wait a week. He has an appt. with a surgeon at Loma Linda (CA) but that is not until the 20th of April or so....

After all of that.... I guess my question is - Is this waiting time normal? Should things be moving faster? My Dad is not sleeping well and his blood pressure is high now. He is not handling this well. If there is anyone out there that can let me know... or even offer to talk to my Dad, that would be wonderful. My Mom has been making the phone calls, but this is very hard on her to and I have offered to take them over. It is very hard to see your parents stressed out and so worried. :(

Thank you very much in advance!
Karen - Southern California.

P.S. My Dad is 72 and is very healthy otherwise. He is still working - self employed - and wants to be around for a while :)

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13 years 7 months ago #349 by Terri_S.
Hi Wendy,
Thank you for taking the time to answer my questions. I appreciate it!
After I wrote that post I dug around on this board and found some other information such as the presurgery site, the post surgery site and the nurses' information. What a wonderful board this is!
Thank you for the suggestion about my Dad joining the survivor 'chat' board.
We're very optimistic about this surgery and its outcome. We feel we have caught this early and that Dad will make a full recovery.

Thanks again for helping out!
God Bless,
Terri S.

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13 years 7 months ago #348 by wendy
Hi Terry,

I'm sorry about your father's diagnosis but with timely surgery there's every reason to expect a total cure. When you say they will 'possibly' remove lymph nodes, I want to butt in and say, "Please make sure they remove enough lymph nodes" as this has been shown to increase long term, disease-free survival, even if the lymph nodes taken are cancerous. There's some more info about that on this page
http://blcwebcafe.org/cystectomy.asp


> He lives in the Kansas City, Missouri area and is really interested in talking with someone in that are who has had this type of surgery.<

Perhaps he should join our discussion group for input from survivors (see http://blcwebcafe.org/listinfo.asp )

<*How long is this type of surgery?<

About 5 hrs barring complications and possibly shorter.

<*How long will the hospital stay be?>

Usually around 6 days, barring complications of course.

>*What are the post surgical complications, if any?<

An useful outline of what to expect with an ileal conduit can be found here:
http://blcwebcafe.org/urinarydiversions.asp and also here: http://blcwebcafe.org/ilealconduits.asp

Your father's doctor should provide booklets and other information material.

>*What is the recuperation time at home<

About six weeks, some give a rule of thumb saying a week for each hour on the O.R. table. The sooner one gets up and walking the quicker the healing time.

You may also want to look at the hospital and post-op 'survival guides' that were contributed by patients, found in the main menu of the website's home page: http://blcwebcafe.org/

I wish you and father all the best, he's lucky to have you out here asking questions. Take care of yourself too, I know how stressful it is when a loved one gets a cancer diagnosis.
Here's a helpful link for caregivers, http://www.nlm.nih.gov/medlineplus/caregivers.html

Wendy

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13 years 7 months ago #347 by Terri_S.
Hello Everyone,
My Dad is scheduled for a radical cycstectomy with removal of the prostate and possibly the lymph nodes.
He lives in the Kansas City, Missouri area and is really interested in talking with someone in that are who has had this type of surgery.
He wants to go with an exterior bag after surgery. He is 71 years old and in excellent health.
My questions are these:

*How long is this type of surgery?
*How long will the hospital stay be?
*What are the post surgical complications, if any?
*What is the recuperation time at home

I feel fortunate to have found this site. I sent this information to my dad and I hope he will be able to take advantage of it. In the meantime, if you have already answered these questions somewhere else on the board, just point me in the right direction.

Thanks again,
Terri S.

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