Welcoming any advice

15 years 9 months ago #18215 by Patricia
Replied by Patricia on topic Welcoming any advice
Ginger you would be amazed at how many are sent home with no guidance...stoma nurses are a rarity...Cleveland Clinic one of the few that has their own building for stoma nurses. San Francisco has no stoma nurses,,,,my city has 2 and have never seen or dealt with an Indiana Pouch......!
No Poop...No Food.....Gene's bowels must have been raring to go early...mine took 5 days.
Pat

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15 years 9 months ago #18206 by Gene Beane
Replied by Gene Beane on topic Welcoming any advice
Well you are very informed so far. I have not heard of radiation after surgery while in surgery, thats a new one for me.. our experience was at the Cleveland Clinic, also with the bag for my husband, he did have a heart attack one year prior to surgery with 4 stents, it was a emergency situation as his main artery was 99 per cent blocked and he went code blue in the ER. He made it thru his R/C without a problem heart wise, but make sure he always takes his heart meds after surgery on time. I too would be happier if the surgeon has done many of these rather than 5 a year..The Cleveland Clinic is outstanding in this area, However, keeping a vigil is a wonderful idea, no matter how good the hospital you can always run into some staff that just don't cut it. Two eyes are better than one , 4 better than 2, etc.
And my husband hears some but not all things, being on meds, he hears less than that, so good for you, stay by his side. Days in the hospital, that can vary, we were 6 days, some have been up to 24 days because of circumstances, but if all goes well I would count on 5-6 days. Ask questions, after surgery he will be very dry, a wet wash cloth does wonders, second day walking, 3rd day food, maybe,nausea can be a problem, be ready for it as the anesthesia makes a problem in the intestinal tract. The nausea and the bowel issues really were the biggest problems for my husband, he by the way has the outside bag, works like a charm you just need good stoma nurses to help him find the right one to fit his body type, Hollister is what we are using. The stoma nurses should visit at least twice a week until he is able to change it comfortably himself, not to worry they don't send you home with no guidance, at least they shouldn't...My husbands surgery is listed back on Sept.16th 2007,in Invasive section day to day, it could help to read it..I am here and so is my husband if your dad would like to speak to him. The Cleveland Clinic has asked my husband to talk to some who are afraid and are uncomfortable with there situation, so we talk to them when there is a need,,, My husband was 67 at the time of surgery and is back to working and traveling, golfing, so recovery done right will get you your life back , as I pray it will for your dad..lovingly, Ginger and Gene Beane

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15 years 9 months ago #18202 by momof4
Replied by momof4 on topic Welcoming any advice
Melisa,

Welcome...I understand that your father and Stepmother are probably very anxious about getting this surgery done ASAP...But I also stress that you need to locate a surgeon that does alot of these surgeries...there are so many variables, and issues associated with the surgery, recovery and further treatment. A comprehensive team is needed...preferably at a major cancer center...they can provide a qualified surgeon, uro-oncologist, radiologist, access to the latest treatments, and usually excellent care in the hospital setting for recovery and follow-up...there is really only one shot at this...it all depends on the qualifications of those involved...Stress this point to them...there are horror stories about those going to Drs and Surgeons without enough experience with this disease...This is obviously his decision ultimately...but the information should at least be passed along...maybe talk to your step mother first to see if she agrees with getting another opinion...A spouse is generally the best person to relay the information...

Wishing your family well,
Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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15 years 9 months ago #18201 by Melisa
Replied by Melisa on topic Welcoming any advice
Thank you for the response Pat. I am very sorry for your loss. Dad has been cancer free (melanoma related) for 3 years. The BC is another story.
My father is 63; will be 64 later this year. The Surgery will be performed at Riverside Medical Center which is not a cancer institute.

Thank you for the link. I had try to do some research on his Urologist but found little information. I was able to pull up (and pay for) a record of any malpractice suits. Apparently there was one in 1998. I just found that info this morning so I will be passing it along to my father ASAP.

I am unsure of the details regarding radiation in the OR if the cancer has spread and will be asking questions about that as well. I wasn't sure if anyone else had heard of it either.

Yes they will be taking out nodes but they(dad & stepmom) do not know how many, it has been added to their list of additional questions.

The surgery is "supposed" to last between 5&6 hours.

Thank you again for your input - it is much appreciated.

Friendship isn't a big thing; it's a million little things.

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15 years 9 months ago #18199 by Patricia
Replied by Patricia on topic Welcoming any advice
Well you really don't need any advise...your concerns are well conceived and nobody is listening. I personally would not want a uro to do surgery on me this extensive with only 4 to 5 a year especially when you are looking for nerve sparing surgery for a male. How old is your father?
On the other hand the uro has a good background
www.urologyofva.com/hamptonroads-williamsburg/physicians.asp#rento
At what hospital does he practice? There is only one NCI Cancer center in Va in Richmond...VCU Massey. My former sister in law was treated there for melanoma for 5 yrs..she died last week after a horrific fight.
I don't know....Dads do what they're going to do...mine did too and it did cost him but what more can you do but collect the information and pass it along.
And no i've never heard of treatment on the OR table if it has spread other than taking out lots of nodes. I don't know what they are talking about?
4 days is pretty short...they usually wait until the bowels are working again and that can be a real variable but i've seen it happen.
How long has the doctor said he will be in surgery? How many nodes will he be taking out? I would find out exactly every procedure he plans and the time element, how pain will be controlled after the surgery. If the cancer is found near the base of the urethra then they will not do a neobladder..my guess is he will opt for the ileal conduit which is a shorter surgery also.
Pat

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15 years 9 months ago #18196 by Melisa
Welcoming any advice was created by Melisa
Let me begin by saying thank you to all of you for being so willing to share your experiences and advice. I have visited this site for about a year now and have been sharing information I find with my father who was diagnosed with superficial BC 2/2006. I was hoping that he would become a member here because of the outpouring of support and information you all give but much to my chigrin, he has chosen to keep it bottled up. He is a very private and strong-willed person.

A brief history:
Dad was diagnosed with Stage III Melanoma, 2/2005. August 2005 he had a mild stroke (unrelated to the cancer) and Feb 2006 he was diagnosed with superficial bladder cancer (unreltated to the BC). The Melamona has not recurred, the stroke left him with minimal paralysis in the right hand but he is easily fatigued (I think due to the bladder cancer and the stroke).

As far as the BC he has had 3 TURs since then, the last one being February of this year.

Unfortunately, after the last TUR his Urologist informed us that he believed the cancer had spread to the prostate. A biopsy was done and it had not (thank God) however the cancer diagnosis did change to invasive BC and it was recommended that he have an RC.

Dad's Urologist does not perform Radical Cystectomies so he referred him to another Urologist - a Dr. Rento. After much hesitation/consideration (fear of quality of life, etc) my dad has scheduled his RC for June 25th (next week). Over the past week has been undergoing various preop tests.

1- CT scan of the abdomen and hip (he has been having severe hip pain for 2 months),
* I should note here that a bone scan of the hip was done about a week and a half ago and only showed "inflammation" in the hip joint. No fractures, cancer, etc. I am praying that his hip pain is due to his exercise activities at a local health club.
2- Preop labs were performed yesterday as well as marking of the abdomen if he has
to have an external appliance.
3- Tuesday AM he is to being drinking the GoLytely.

My concerns,etc are:

1- The Urologist who will be performing the RC only does 4-5 of these a year (Dr. Rento primarily handles surgical procedures relating to prostate cancer - he also uses a robotic arm during such procedures). I have stressed to my father, several times, that I felt he would be better served by going to a cancer treatment center/urologist who does this sort of procedure on a regular basis, however my concerns/comments are to no avail. Should I be greatly concerned about the skills of his urologist? My stepmom said that the doctor was very confident about his skills, the procedure and kind of blew off any concerns that she/dad had.

2- The doctor has informed dad that he will be in the hospital, most likely, for about 4 days. (These seems rather short to me as I have read most stays are 5-8 days).

3- Dad has been informed that we will not know what kind of "bag" he will end up with until the surgery is over. This is due to not knowing exactly whether the cancer has spread to nodes, other organs, length of dad's bowel, etc. Of course we are all praying that it is internal and able to be connected to his urethra.

4- There was mention that if the cancer has spread, they will do radiation in the operating room. Has anyone experienced this or heard of this being done?

5- My stepmom, sister and myself will be rotating days/nights to stay in the hospital with my dad. We know there are skilled professionals there but let's face it, night time is when staff is short-handed. (My stepmom has been an RN for 30+ years so we have much comfort knowing her skill. On the flip side, her care has been in a ER/Med Surg/ICU setting, none of which have been at/for cancer patient care. While there are routine procedures for any patient, cancer brings a whole new and frightening spectrum of things to face.) Is there any advice you can lend as to what to keep an eye on, what to expect, etc.?

6- My father also had a mild stroke in the past. (August 2005)and I am concerned about the potential to have another on the operating table. Have any of you had this history prior to major surgery?

I guess that it is for now. I appreciate your allowing me to participate in this forum and look forward to your input. My thoughts and prayers go to you and your families as you too face your own battles. My apologies for this being so lengthy, thank you for taking the time to read it.

Sincerest Regards and Respect.
M



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