Bummer...

15 years 11 months ago #15513 by Melodie
Replied by Melodie on topic Bummer...
Gracie,

Cancer is a very frightening subject and so of course all of us have been scared at some point during our fight...the more you talk the subject with others and do research, the less frightening the idea of surgery will be. That combined with prayer and research so you get the right doctor selected, you will find an even greater sense of reassurance that everything will work out OK. You have the right attitude, taking it one day at a time...anything more is just too overwhelming. I'm anxious to find out what your doctor will tell you at next appointment...keep us informed. Take care, hugs. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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15 years 11 months ago #15347 by Gracie
Replied by Gracie on topic Bummer...
Thank you all! I read and re-read each post. I am pretty confident that I will be choosing the pouch. The whole ordeal of course frightens me beyond anything imaginable. But the reassurances help so much. My mantra right now is - this too will pass.

Not having a definite plan right now is making us anxious. Hopefully by next week I will know the course of action and date.

Will keep everyone posted and sending my best, Gracie

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15 years 11 months ago #15328 by carolyn king
Replied by carolyn king on topic Bummer...
PS in surg they checked 18 lymph nodes and mind were all negative so they recommended no chemo or radiation. I will get a Cat scan every 6 months for awhile. I wanted radiation instead of surg and my surgeon who is also an oncologist said I would be sicker with chemo and radiation then my neo surg. or I could go through chemo and radiation and still have to have the surg but in a much weaker state. Best of luck to you. I know just what you are going through and it takes me back to that horrible state of making decisions and putting life on hold.

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15 years 11 months ago #15321 by carolyn king
Replied by carolyn king on topic Bummer...
Hello.. I remember in Dec when I found out I had bladder cancer and it was in the muscle and how scared (I even used that name on the web/cafe) I was. I was 62 working as a nurse manager and did not take any medication but sometimes when I wiped the paper turned a little pink which made me talk to my doctor and things happened very quickly after that. I experience this terrible fear that it could be cancer. When I had my cat scan and I was diag with the cancer and biopsy showed it was in the muscle I became depressed for the first time in my life. I'm very active in the community and had always had allot of energy for my projects..had smoked when I was younger but not for many years. Being a nurse myself, having a twin sister who is ahead of a cancer center, daughter and niece who are nurses and son in law a doctor you would think everyone would agree to the same treatment. Everyone had their opinion. I did allot of reserach and was fortunate that I could have gone anywhere for my surg. I knew I could not live in the state I was in dealing with this disease. I chose Dr Koch at IU Medical Center in Indiana. I had a complete hyst with a neo bladder 12/26/07. I told the doctor that I wanted to be as normal to before cancer as I could be and he felt I was a great candidate for the neo due to my status. I also went through which kind of surg I should have. We have a pool and a florida beach house and I just wanted to be pre bladder normal and be in the water as long as I wanted. If I could I did not want to do self caths or deal with any outward appliance and took a chance on the neo. He did the neo and hyst in 3 hours. They did a spinal block after surg and I had no pain for the first 24 hours and then on a pump which I controlled for pain control. My family stayed allot in the next room which really helped to walk and just to know they were there. I was there for 9 days and went to my daughter's home for 3 weeks. I have never had to self cath or had an infections. I'm completed dry and do not wear a pad at all during the day and where a depends at night just in case but wake up more times now completely dry. I never thought I would say it but I feel normal. Now it has been 3 months and 2 weeks and you will feel weak for a few weeks but I was back to work part time in 7 1/2 weeks because my replacement person had heart trouble and had to have an operation. The first month you have a catheter and then you get xrays to show you have healed. They took the cath out and told me to go to the bathroom and try to void..I could start and stop on demand and they said that was an excellent results. My muscles hurt for awhile because you are using new mucles to void but now I can go 2 -3 hours without any problems. It feels almost normal when you have to go. Each week you feel better and stronger. The first 2 months are tough not due to the pain but your endurance. You feel the need to go to the bathroom each time you have a different feeling. That just improves each week. I also went on a anti depressant which I did not want to but my doctor told me it would help the pain and it would make me feel better which it has.
Dr Koch said he does not do allot of women because when they come to him they are not good candidates due to other health issues. But he said the Indiana pouch is as extensive as the neo..still have to remove 20 + inches of your small intestine and make the pouch. He recommended the neo and I'm so glad. I think it depends on length of your urethal and many other issues but he certainly feels if you are younger it is worth it to try. He does not believe in self catherizations unless you just have to. I have never had to. He also said all neo's have some night incontinance but would improve and it has. If I go into a heavy deep sleep I will leak a little but I'm only 3 months out. Now I go through only 1 depends a night. I think when it is in your muscle you have no choice than have the surgery and the quicker the better. I had trust in my surgeon. At first I wanted to find a doctor that would spare my bladder but came to the realization that I had to get it done.I was told my one spealist that they do not do neo bladders on women and that I should have the urostomy bag. I just figured if I have to go through this big surgery I want to go for the one that my give me the pre cancer freedom. I also talked to 2 other women that Dr. Koch did and they are very successful also. the robot surg may be good but it is long and as a nurse I know the shorter time they have you open the better. Good luck to you and if you ever want to talk to me my phone number is 765-384-7952. What ever surgery you decide I can tell you it will be a relief to have it behind you and not dealing with the decisions and stess you are dealing with now. The web/cafe was such a wonderful support before my neo and found the support and information I needed. Carolyn

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15 years 11 months ago #15298 by harry s
Replied by harry s on topic Bummer...
hi Gracie - I haven't been on-line a lot lately, but noticed this thread. I take it that you are in CA and are looking for a surgeon for your RC? I'm not sure what part of CA you are in...we live in the central valley (Fresno) and traveled to the bay area - Stanford Medical Center. Dr. Gill performed my husbands RC in October. If you are in the bay area, we'd recommend him. Although I don't know how many women he has operated on... Margot and Harry

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15 years 11 months ago #15283 by lisaloo
Replied by lisaloo on topic Bummer...
Hi
Sorry its taken me so long to respond but I really wanted to.I had my surgery in November and to be honest things have already settled down and I just think of it as normal.I had a continent diversion and it works for me.
I am finding chemotherapy much harder to deal with than the surgery was and you are luckuy that your doctors were so vigilent and hopefully you wont need further treatment.
I am happy with the surgery I chose I would have not coped well if continence had been an issue I have two young children and want to be back running round with them not worrying about pads etc.Self catheterising through the stoma is easy and takes little longer now than a normal loo trip.lthough I do warn you that wasnt the case in te beginning.
Good luck though you have had some fantastic advise form board members and this is a great source of information.Please contact me if you want anything at all
Lisa x

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