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Bummer…
Well the last few weeks have been interesting in terms of my journey. Looks like I am facing the next big decision. Surgery.
The last year has been wonderful. All ‘all clears’ on the cysto and FISH. The last time my cysto pathology came back negative and my FISH came back negative as well. The doc noticed a lesion at the base of my ureter. After a MRI, it was noted that this lesion was restricting my flow of urine from the kidney. The doctor removed it and it was malignant and had gone into the wall of the bladder. The reason why the cysto and FISH were negative is that it lay under the lining of the bladder. What a roller coaster ride this has been and all of you out there know exactly what I’m talking about – the sweating out of test results each time. Then when there is good news its just not good enough!
The doctor mentioned radiation/chemo as a consideration but both of us seem to feel it is putting off the inevitable. So now the decision. Being a woman has its own unique set of issues. I would like to ask if anyone has some good advice for me.
Which alternative may be better from your own experience – an Indiana pouch or neobladder?
Has anyone heard of the davinci robot used in surgery?
Does anyone know a doctor who may have treated more women?
How can I prepare for all of this? I sometimes feel like I don’t know if I can do it. Pretty depressing stuff. How am I going to get through this?
Best,
Gracie -
22 Replies
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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
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
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.
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
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
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
Gracie,
It was so great to talk with you today; you are a smart woman and resiliant and will do just fine. We are all here to help you get through this very difficult time. I am very excited; called my friend in CA and talked to her; she lives in SF and so I just know you will want to call and talk with her, she gave me the OK to share with you her phone number….so please check your PM, where I will list it.
Take care and know you can always call me again…I will also give you my email address in that same PM. Going now to PM you so you have chance to call her later today if you so desire. Hugs, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Gracie,
Glad you enjoyed hearing from me; that is what I like to do, write so that someone feels as if they have been given some needed information and feels “hugged”….I have gotten that feeling many times from others on this forum.
And you are right about Pat…she does have a wealth of information and she is going to know who the best doctors are. I believe you are headed in the right direction. As for radiation, I agree with Pat and would refrain from doing any of that since it injures the intestines to some degree and you want them to be in the best shape possible for making the new bladder. My phone line is busy when I am on the web but hopefully you can get in touch with me this weekend…if not, then you can give me your number and I can call you.
Only other advice for right now that I have is to find a good doctor that can begin treatment without too much delay. Take care & hugs sent your way. :) Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightGracie since you had a blockage in the one ureter may have something to do with the increased rate of creatinine…normal in a female is 0.5 to 1.1 but they should also do a calculated glomerular filtration rate along with a serum creatinine level to evaluate kidney function. They’re probably not worried as i suspect now that you have the stent things should improve…….thats my guess.
There’s a bunch of stuff going on out there that i find that is new…its hard to keep up….lots of it in trial stages but i try to keep on top of it…not easy.
pat
Hi Pat!
Yesterday we took a small recorder with us. Besides having ‘senior moments’ – its just so much information to absorb. ::) I know there was some logic behind the radiation but I think I sort of mentally dismissed it and wanted to move on. Haven’t had a chance yet to listen to tape but will let you know.
As I mentioned – the previous lesion (before TURBT)was partially blocking the ureter and they have put in a temporary stent that opened things up a bit. Just a little troubled that my creatinine is still a bit high (its. like 1.26 where I usually have .9 or 1.0). Will have to keep an eye on that too – it may take a while after clearing the pathway from the kidney for everythig to get back to normal.
I can’t imagine that there is a protocol out there that you haven’t heard about, Pat! You are truly amazing.
Best,
GracieGracie…i was T2 Grade 2…..no radiation..no need to compromise surrounding bowel especially if its going to be made into a pouch. If Ct scans are clean, bone scans clean, blood work good…I wouldn’t do it. Wonder what his theory is on this? Maybe there’s a new protocol out there i don’t know about???
Pat
Melody,
After time i read a new post I feel as if I’ve been hugged. I certainly feel that as well as such encouragement after reading yours.
I am just about 100% sure about which way I want to go. I can see the neo working for men but one size does not always fit all. It just doesn’t seem to fit for many women. I’m glad it works for some but I don’t want that kind of gamble. So I can see my mind being set on the pouch.
I did see my doctor yesterday. As expected, he preferred the neo. However, he said the choice is ultimately mine. He said he wanted to consult with another of his staff to see if I am a good candidate for laproscopic surgery (with the pouch). (I didn’t even know they did this at this med center!) I expect to have a follow up with him next week.
He mentioned that I could opt for radiation before but that is an option. My first instinct is that if I don’t need it – I don’t want it. The tumor he just took out was T2 Grade 2/3.
Melodie, I did get your email. Thank you for being so generous as to offer to speak to me on the phonee. I will try to call you this weekend! Thanks so much.
Best,
Gracie
Gracie,
Sorry I didn’t respond to your note earlier but I just put in my first 40 hour work week after being off from work on disability for almost a year. I see from your notes that you were to see your doctor today…what is the latest?
Sounds like you are very fortunate that the doctors have discovered what was wrong ad you have time to fight this cancer. When I was first dx’d in March of 07, I just couldn’t believe what was happening to me…had always been very healthy, never smoked, had not worked around any chemicals, etc. I was not at all prepared for what I was about to face, and the doctors justed blurted out…”you hav invasive cancer, you need 4 months of chemo and then have your bladder removed.” I felt so completely alone and helpless until I found this website and what a blessing it has been for me and many others.
Anyway, I found lots of info. and more importantly, several here who took turns holding my hand, so to speak, and helped walk me through this proces. Yes, I was on a very difficult journey but I was not alone. I followed alot of Pat’s comments because I was very interested in the Indiana Pouch and she sounded very happy with her decision. I also made friends with a gal in California who also had gotten an Indiana Pouch…also pleased with her outcome and said she was going to wear her bikini when she went on her next cruise. Both she and Pat have their stoma put where the belly button is….mine is located just off to the right and down a few inches. I have affectionately named my stoma “Rosebud” and I loved her at first sight. I did my chemo last spring and summer, had my RC in late July, went back to work on a reduced schedule in early February and now am back to full time schedule.
Gracie, trust me when I say that I am a big baby…can’t handle pain and all in my family (to include my mother) have called me the “family whimp”….but not anymore.
I amazed them and myself…and especially my spouse. I would never have imagined that I could make that journey and make it successfully but Pat and others like Holly kept telling me that I would be OK. I have a very strong faith and I asked God to direct me to the right doctors and the right procedures, etc. and I always felt like I was being watched over. Yes, there were times when I was frustrated, frightened, angry, depressed, but I have to tell you, there also were times when I was so encouraged and inspired by others I met here and elsewhere who were also fighting cancer…brave, noble, caring, awesome people. I felt so very blessed to be in contact with so much goodness.Anyway, I have seen the good, the bad and the ugly of cancer. I am more than happy to answer any questions you might have for me…I am hoping the gal I know in California will chime in since you may live near her. I am 57, have two college age kids, daughter and son. I live near Seattle and had my RC at the Univ. of Washington Medical Center…had a 9″in incision with staples…healing very nicely…I don’t think I will have much of a scar, if any. My insurance did not cover for me to go outside the state of Washington so I went with the best I could find here….head of the Urology Dept.
I have not found any women in my area who have a neobladder that don’t have to cath themselves, so I wanted the Indy pouch and am very glad I was able to get it. It was frustrating in the beginning, getting it trained, but now I almost feel like a pro…just as Pat said I would. It’s miraculous really when I think about it…how efficiently it works for me. I turely feel blessed. I do have to be cautious about what I eat and drink but I am feeling healthier all the time. Please don’t hesitate to contact me via PM if you would like. I will go ahead and PM you to give you my phone number if you wish to call me. I love helping others who are on this journey so please feel free to call or email me. Stay strong. :) Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightGracie,
Just thought I would chime in, my husband had his surgery with Dr. Gill and Campbell at the Cleveland Clinic. Gill is suppose to be the best at laproscopic and the first to do an Indiana..from what I am told laproscopic is not much different from the DaVinci .it allows you to have only 4 small slits instead of a big incision, thats what my husband had, laproscopic. You can’t go wrong if Gill is on your team of surgeons. Of course Pat was his first Indiana pouch,, so shes certainly got all the answers on the Indiana.
My husbands r/c was Sept. 14th, 2007, and he is doing very well, Pat will tell you they have a VIP section, make use of it if you can, it will make a world of difference…no time like now to pay for the best if possible…Ginger
Marie – wow, never ceases to amaze me how person brings a different story. Thank you for sharing yours. You are so right – its very intense. Its been a ride! You are making terrific progress! You should feel very encouraged by that. I also have very definite feelings about self-cathing with the neo. It seems to work so well for men. Thank you and continued good health.
Sky Pilot. Another doctor told me that my doctor may have saved my life on this one. My cysto and FISH were both negative. It was well hidden. I’m glad that he has a curious nature and went in after it. Its wonderful that you are doing so well! I will keep your extremely kind offer to help in mind.
Best,
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